Pray for Abbie

A New Site!!

2011-11-17T09:19:00.001-08:00

After a couple of years of intending to, planning to, and even trying to, I have finally (with the generous help of Jean Egan) completely reformatted Abbie's website. All past updates have been posted there, as will all future ones.

Please, come join us as www.prayforabbie.com !

A Season of Extremes

2011-10-05T21:50:00.000-07:00

I've been looking for my camera cable for two weeks, to download all the pictures and video this update merits (don't tell my husband, please.) I'm giving in and will just use words for now, and do a photo update later.

It feels like we have been in a wind tunnel for the past eight weeks. The high points have been record highs, while the challenges have been more pressing than our "normal". We are hoping that calmer waters and lighter breezes lay just over the horizon.

The Good Stuff:

Isn't this always the best place to start?

One week after turning 10, on August 23rd, Abbie received her first car. Well, it doesn't have a license plate, but it was more expensive than my van...so I think it counts. And she relishes the idea that she got her own car way before any of her brothers did.

Her first power wheelchair is a sight to behold. As the technician from San Diego was putting it together, I said, "This is like the BMW of wheelchairs!" He answered, "This is like the BMW M3 of wheelchairs...I've never put one together that was this nice!" See what I mean about really needing pictures to do this justice?

The seat was custom-molded to her body, and is made of material that passes air through it, so it is really good for both her posture and her skin. The fine-tuning of both the seat and the chair were no small undertaking, however. Over the course of three days we spent 20 hours at the rehab department, making adjustments, checking the results, and making further tweaks. The programming of the electronics alone took a couple of hours.

The head controls on the chair will allow Abbie to drive her chair, but also to control the tilt and recline functions independently. She will be able to elevate the chair 14" to be at appropriate heights in varying situations, and she will also be able to elevate her leg rests to give her legs and feet a break.

Abbie will be able to use the head controls to use a computer mouse, and to change the channel on the TV (she was excited about that one!). And, the wiring is in place for a future voice output computer that will allow her to more freely and completely express her ideas, thoughts and opinions (watch out!).

It seemed like a dream, seeing her in the chair. I guess I worked so hard on containing my hope during the requisition process, that I'm not sure I ever really believed she would get such a wonderful chair. The seating alone is going to change her life. Healthwise, it keeps her in a much better position for her spine and lungs. Breathing is better, alignment is more proper, and she gets all the support she needs not to "droop".

Socially, though, it's even better. Instead of sitting in a semi-reclined position in what looks like a stroller, Abbie now sits straight up, looks straight ahead, and looks every minute of her ten years. She won't ever again have to hear "Mommy, look at that baby" when other children walk by.

It has a joystick at the rear of the chair that allows me to drive it. Using the chair independently will be a developmental process for Abbie. She hasn't moved on her own in over seven years, and will have to learn how to maneuver once step at a time. I must admit, even for me, there is a learning curve to driving the chair. I am very thankful that the speed is variable, and you can usually find me dialing it to the "turtle" setting!

Loading Abbie, in her new chair, into our van...seeing her looking straight out the windshield at the wide world before her, instead of at the ceiling...an incredible high.

Things began to change the next day.

Emotional Whiplash:

The last day of adjusting the chair was a Wednesday. Much of it was geared toward programming the electronics, so it involved a lot of just lying around for Abbie. The flow of the day masked the fact that she was not feeling very well. She finally got to drive the chair for the first time in mid-afternoon. She seemed a little tired to me, but was so excited by the chance to roll down the hall that she rallied remarkably. (I do have video of that first drive...will post it...someday)

As she was driving I noted she was a little flushed, but since she was so engaged in what she was doing, and it was so thrilling to watch, I pushed my concern to the back of my mind.

When we got home, her temp was 101.4. Rare for her to have a fever. By 7pm it was 103. It was a difficult night for Abbie, but around 4am her fever seemed to break, and I was hopeful this was a 24-hour bug I'd been hearing about.

By noon the next day we were at the ER, with Abbie on 5 liters of oxygen and a fever of 104. We rarely go to the ER, but when we do it's usually a "rule-out" visit. I want to make sure she doesn't have a UTI, or a junky chest, and get whatever she needs so that I can take her home. Hospital admission isn't ever really my plan. This time however, I packed all my things to stay, because I knew, no matter what the diagnosis was, we weren't coming home.

The doc on duty was the one we always see during our "rule-out" visits, and he breezed around the corner like it was another one of those. Upon seeing Abbie, he stopped, his faced changed, and he said, "Wow...she is really sick." A few tests and pictures later....pneumonia. Admission to the PICU soon followed.

Abbie's only gotten pneumonia once independently (2006) and once after a long surgery (2008), so I was disappointed in myself that I'd allowed this to happen to her, but even more so, I felt the ocean of fear lapping at the shore of my faith. "This is what 'these kids' always die of..." swirled through my brain. I hate it when people say that -- as if we need reminding, and as if, when the challenges come, the dark predictions are of any assistance.

The intensivist told me she was either going to get a lot sicker, requiring intubation, or she could possible just get better from here. Not a lot of assurance, but at least a flicker of hope.

Nothing could stop her fever from breaking through, and it stayed near 104 through the night. Blood work came back indicating it was most likely a bacterial infection. IV antibiotics were started, and sometime near dawn they took effect and the fever abated a bit.

I must tell you, though, as a woman generally ambivalent about Facebook, this experience changed my outlook on that and reconfirmed my esteem for you. I posted updates on FB frequently, beginning in the ER...and I have not experienced anything like the results since Abbie's initial injury. As friends began to post their prayers, I could literally feel electric shocks starting at my head and running through my body. I would awake feeling it, and knowing we were being prayed for. I would be praying over Abbie, and feel it, and know we were being joined there. It was incredible, powerful, and humbling.

Thankfully, our strong, feisty, motivated girl chose Path B: the "Just Get Better" plan, and never needed intubation. She was discharged after 10 days, and went home with a new friend, The Chest Vest. This device, an inflatable band around her chest, hooked to two air hoses that connect to a box with programmed speed, pressure and time settings, has helped her chest become "clearer than it has ever been...ever" in the words of her pediatrician today. Woohoo.

A great recovery marker happened yesterday. Abbie finally got to ride Lizzy again. She had missed "her" horse so much! Her little body just melted into Auntie Pattie as they rode along, and I don't know who was grinning more.

So, Abbie is in a good place again, with much to look forward to. I took Kyle to college at Seattle Pacific on 9/22, so it's down to just five of us at home now. It is strange for us to all fit so easily into the van, but the twins are loving having their own bedrooms for the very first time.

Ray and I are off to Santa Clara tomorrow night for my college reunion. I absolutely can't wait to see so many special people I haven't seen since graduation...and two nights "off-duty" for both of us, with the added bonus of a visit with Chase.

More to come soon....with photos, I hope. So sorry for the long lapse. We were once again learning, in vivid color, about the faithfulness of God in the storm. I hate the situations, but I do love feeling Him nearer than I can when it's sunny.

May His blessings be upon you today!

Still Here...

2011-08-22T23:14:00.000-07:00

I think this may be the longest lapse in updates ever. This summer has passed in a blur of happy, sad, plans obliterated and then reconstructed, big leaps forward and slippery slides backward. I can't believe the end of August is near.

The bottom line, after so many weeks (months) is that Abbie is doing well. She is growing, healthy, happy and eager to learn. As she matures, there are times I sense she is processing her differences and limitations in new and deeper ways, and on some days I can see fatigue in her eyes. But, ever the fighter, those days and thoughts don't last long for her.

A couple of developments that have long been in the works:

Abbie will be getting the bestest, biggest, shiniest, fanciest 10th birthday present I could imagine...a week late. Her power wheelchair, with all the bells and whistles arrives next week! We will spend several hours adjusting it to fit her perfectly, and then she will have the chance to gain some independence. I can barely grasp how much this may change her life.

In addition to the obvious movements forward, backward and turning, the chair will allow her to control the tilt, recline, footrest position and elevation of the chair. I simply cannot wait until she "tells" someone she is done listening to them by turning around. Let the sass come forth, I say (in small, measured increments:)

Her therapy team has been working on getting her this chair for almost a year now...I think it's safe to say there may be a few tears shed when Abbie rolls away in it.

And then, on the ABR front:

Recall that ABR is the therapy platform we've learned about that really does provide hope for physical recovery for brain injury survivors. But, also recall that we would have had to travel to Montreal for a week, and then the mainland US three more times during the first year of ABR. The costs and logistics of this prompted me to explore creating an ABR project in Hawaii.

The challenge was that there are a limited number of ABR "trainers" in the world, equipped to do the in-depth assessments of the child, and training of the families. Since meeting the ABR inventor, Leonid Blyum, in April we have been kicking around ideas about how to pursue a Hawaii project. I made no secret of the fact I wanted a trainer full-time in Hawaii but admitted I knew this may be an impossibility, given the constrains of the trainer corps.

Earlier this month I made contact with a trainer who: #1. has the passion, vision, skills and abilities that match up with my vision for the project, #2 is willing to move to Hawaii, and (most important) #3, has a wife who is willing to move to Hawaii.

I am working with key stakeholders in the community to ascertain where exactly he will work, how the funding will flow, and other details. But, it is my deep hope, and firm belief, that we will look forward to welcoming the trainer and his family to Hawaii early in 2012.

It is also my conviction that, once this project blossoms, the work that is done will change the course of the lives of people with brain injuries and their families not only in Hawaii but around the world. I am finding that as long as you don't give up, even when there doesn't seem apparent reasons not to do so, hope eventually transforms into something tangible. And, sometimes it is even better than you'd imagined.

Please continue to pray for the success of the Hawaii ABR project. I told the trainer that last November, I first became aware of Leonid's work and prayed for a way to get him to Hawaii. Six months later, he came. In March I began praying for a trainer to come to Hawaii. Five months later, I was in touch with one willing to move to Hawaii. To me these are exciting answers to prayer....but what I really long for is the "Big Answer", for ABR to come to Hawaii and start changing the bodies of children and the lives of families.

Tonight we had a special family dinner to celebrate Abbie's last day of being 9. We shared memories of the day she was born, which included RJ's announcement to the neighbors that "We have a grill!', and each boy now claiming he was positive she was a girl when I quizzed them at the bedside before we revealed whether they had a brother or a sister.

Just before dinner I prayed with thanksgiving for God bringing Abbie to our family, and then remaining with her every day since. Truly, I know He has....and in the end, that is all that matters.

The Tooth Fairy's Last Visit

2011-06-30T13:59:00.000-07:00

This update is a little past-due because Genevieve has been in the Philippines since early last week. Writing that makes me realize I've not tied up one huge loose end. In March I asked you to pray for her mother who had a stroke and was on a ventilator with a poor prognosis.

And then...nothing. Oops!

Well, her beautiful mother, Irene, is walking, talking, eating, smiling and blowing away expectations daily. But, there is also the reality that she cannot be left alone, for her own safety. So, with seven sisters in the Philippines, the family decided it only made sense to move her home, where they could rotate care duties rather than having Genevieve's family do it on their own. A tough trip for Genevieve, taking her beloved mommy so far away, not knowing when (if?) she will see her again. But, thank you for your powerful prayers! Irene is a walking testimony to the faithfulness of God!

A couple of weeks ago, we took Abbie to the hospital for oral surgery. We are so fortunate that we had an oral surgeon and her dentist that worked hard to coordinate their schedules so that Abbie could get a deep cleaning while under anesthesia before she got four teeth taken out.

All went very smoothly, and she ended up five teeth lighter, as her four permanent bicuspids, along with her last baby tooth were removed. As has become the routine, the most trying part of the day was getting Abbie to wake up.

She just snoozes, and snoozes....doesn't care about the ice pack on her face. Uncovering her doesn't make a difference. Begging, pleading, joking...even subjecting her to my singing. It took 2 hours for her to crack her eyes open. She was fine...just making the most of a really good nap.

It was a little bittersweet to realize that it would be the last night we would talk about hurrying to sleep so the Tooth Fairy could come. It was an especially generous visit this time!

When I got home from New Orleans I had a very honest conversation with Abbie. I told her that if any of this ever gets too hard, if she is too tired, or if she has completed everything she had come back to do, that she could go. I told her that we would be OK...yes, we would be terribly sad, but we would be happy for her to be free, dancing, running, playing, and talking, talking talking. I told her it was always up to her from now on.

It's strange how when you totally release something, that is when it can come back to you.

That conversation was spurred in large part by the increasing decline in Abbie's respiratory system, and her just looking bound up, uncomfortable and unwell. In the last two weeks I have seen all of that reverse more quickly than I'd imagined possible.

I have begun to meld ABR techniques Leonid taught me with Tennant Biotransducer treatments on the same body areas. In addition, I (finally) figured out one key thing about Abbie's body. Whenever her oxygen saturation numbers dip, her body needs water. If she begins dropping I give her 120ml of water or so, and within minutes she is fine. Using this indicator, I have been giving her more water than I ever thought she could possibly need.

The abdomen Leonid called "collapsed" is now filled out. You can feel the pneumatic pressure (the balloon) when you press on it. You can no longer see her pelvic bone sticking out.

She was getting two nebulizer treatments a day, and quite a bit of supplemental oxygen. She is not getting any nebulizer treatments anymore, and supplemental oxygen is rare as long as we give her water when her numbers drop.

Her face is changing as her cheeks seem to move back up her face, if you will. Not hanging down like jowls anymore, but up where they belong. And, we are starting to see the emergence of a real neck, not just a weak, bulging ring between her collarbone and jaw.

We've mostly been working on her face, neck and lower abdomen, as Leonid prescribed, but we are also see changes in her ribs, upper chest and back. The volume in her chest is expanding. Recall how I likened them to weak hinges that folded easily when Leonid examined her. The left one now fills my hand, nice and rounded. The right remains a little folded, but is also expanding. There are times I see her using the upper portion of her chest to breathe.

I just keep telling her, "Look how STRONG you are becoming, Abbie." I tell her because it's true, but mostly because I am addicted to the smiles it elicits.

Genevieve being gone has given me some very sweet time with Abbie. I just cannot get enough of her. Big things like horseback riding, swimming in the pool, and going to parties; little things, like reading the Psalms together all the way through, even when the day's cycle includes 89 and 119 (a marathon Psalms day:), rocking together, just feeling her beautiful skin and sensing her amazing spirit.

These days are a gift.

Sacred Journey

2011-06-14T17:28:00.000-07:00

Abbie was injured in the afternoon. The hours between then and evening remain a blur to me. The first moment of clarity I can recall is when my friend, Kathleen, appeared around the bedside curtain ( I can still see her coral-colored top and khaki shorts). She just embraced me as we groaned together. There were no words, and she didn't try to find any. She just met me in my pain.

In the middle of that first night, she said, "You haven't eaten anything since lunch...you need to." I had no hunger, but she insisted. I numbly walked to the cafeteria with her at one shoulder, and her husband, Duane at the other. I met their gentle request by selecting a chocolate Fat Boy ice cream sandwich. We sat in surreal quiet, entreating our Lord to meet us there because this was beyond us.

Duane, my pastor, basically moved his office into the conference room next to the PICU, and didn't leave for a week. Kathleen was steadfast, especially in the midnight hours when fear, grief and sorrow gather enormous strength. The McDaniels laid out their hearts to ferry us across unfathomable depths.

I was sitting at Kyle's graduation on May 21, saving seats, when Ray called to tell me that the stroke Duane suffered earlier in the day was "bad, really bad....Tiffany, it's bad...." I knew that sound in his voice, even as my soul began screaming in an effort to drown it out.

I couldn't get to New Orleans, where they had moved two years ago, until late on May 25th. Even with fire-tested faith, I was intimidated by what awaited. I knew before my dear friend Sandra, her daughter Keiko, and I landed, that we were arriving to say goodbye to Duane, and to help Kathleen and their four children keep breathing through those first days without Daddy.

I cannot put into words the days that followed. Each hour seemed a year. Love so purified, so intense as to wash away every disagreement ever had, every cross word ever spoken. Truly, the "greatest of these" is love.

To sit with Duane was one of the highest privileges of my life. One evening I was alone with him, weeping with regret. I could have supported him better as my pastor, as my friend. What in the world did I do to be holding the hand of such a man as he lay waiting for his Lord?

In the darkness, a gentle Voice said, "No man feels worthy of me, because he is not. But, I love you, I seek you, I choose you anyway. I want you with Me." I began to grin through my tears as I looked at Duane's face and said, "Even here....even here you are being Jesus to me."

Kathleen, amazing Kathleen, walked through these days filled with the special grace God grants to those at the center of the storm. I felt it after Abbie was injured, as I was suspended above the maelstrom below. But, this time I was not given this grace, and experienced the crushing pain of watching people you love suffer. It gave me insight into how Abbie's injury was experienced by all those who love and support us...the fire you withstood to stick with us, to pray for us, to hurt with us. I am so profoundly grateful.

I also got to witness the fortitude of Duane's mother, Margery...who can best be described as "concrete coated with sugar." Her graciousness never wavered, nor did her faith. But, you know...Mamas are not designed to say goodbye to their children. It doesn't matter if they are 2 or 54.

So, could you please pray for these two special women; Kathleen and Margery, as they try to find their way in a world that no longer has their brightest star in it.

It was also exquisitely painful to witness four very-loved children (15,14,8,7) begin to process what had happened to Daddy, and what him being in Heaven would mean for their lives. Please pray for Mallory, Matthew, Keanu and Abby as these days and months ahead will be a maze of emotions, grief and the creation of a new normal.

Kathleen allowed me the honor of walking very closely with her through this journey. We wept together as Duane departed in the middle of the night. But, as the sun rose, we truly rejoiced deeply for Duane. In a quiet moment, I grabbed her hand and tried to croak out the following words:

"Thank you for letting me be here for this, for all of this....to see not only the tears, but the joy. If, and when the time ever comes for Abbie, I won't be as scared."

The shadow of the monster constantly lurking was trimmed in size by a friend's courage and love. Just as it was at the beginning of our journey with Abbie.

Duane and his eldest daughter, Mallory

A long awaited joy

2011-06-09T20:23:00.000-07:00

So much has been happening here in the last three weeks that it's impossible to fit it all in one post, so I've decided to write about virtually none of it in this one and concentrate on perhaps the most exciting development, from Abbie's perspective. She is (finally, finally, finally) going horseback riding each week!

She has been waiting for five years for this...first for her trach stoma to close, then to get past the hip surgery, the broken legs, the hand surgeries....she developed Olympian-level patience, that is for sure. With deepest gratitude to Maunawalea Riding Center, and their wonderful volunteers, Abbie gets to Cowgirl-up every Tuesday morning.

Auntie Patty, her riding partner, getting her helmet all set

This first time I took her, we didn't know how best to set up the saddle and support chair for her. In order to get to know her better, Patty decided to just buddy-ride with her. This turned out to be perfect! So, for now, Patty will continue to ride with Abbie, who melts into Patty with each lap around the arena.

The week I was in New Orleans unexpectedly, Genevieve and her son John (who took all these pictures) took Abbie by themselves. So, I hadn't seen them use this neck pillow before. Abbie didn't seem to mind it at all, at first.

But, eventually, it was time for the pillow to go, because Abbie and Auntie Patty were about to hit the road!

Not only do they let Abbie ride around in a covered, shaded arena (Thanks, Lions Club!), but they also let her trail ride down the hill a bit. A group of students volunteered to build a "Sensory Trail" down there, with fun things to do and experience while on a horse.

Abbie getting ready to throw a ball on the Sensory Trail

Abbie and her riding entourage...all volunteers. Makes me want to just keep hugging them every time I see them!

The view from the riding arena. This place is therapy for all of us...if only you could feel the gentle breezes and smell the scent of flowers...aaaaaahhhhhhhh. Love Waimanalo!

Abbie "getting the mail" on the Sensory Trail. Usually there is a cute little rubber ducky waiting for her.

Love just oozes out of these horses, people and place. A tremendous blessing for all of us that instantly became the highlight in Abbie's week.

One quick story to illustrate how kind they are. Like many ranches, "Da Ranch", where the Riding Center is located, is multifunctional. They also do a bit of auto maintenance and mechanical work up there, led by the owner Ben (in the blue, standing by Abbie on the horse).

This week, stricken with the stomach flu, I was unable to drive out there, so Genevieve did it again. As she was leaving, they asked her, "Why is your van making that noise?"

"I don't know," she answered, "there's no warning lights or anything."

They called Ben over who took a listen, popped the hood, took a look and determined that there was no oil...none...in the reservoir. Had Genevieve driven home like that, the engine could have seized right in the middle of the windy road next to the ocean, and that would also have been the end of my van. Yikes!

They put three quarts in to get her home, and sent them on their way. What a tremendous blessing, in every way!

Much more to come as time allows....all is well here, but please pray for my dear friends, the McDaniel Family, after Duane's homegoing on May 30. A wife now a widow, four young children missing a loving Daddy...prayers are their breath and life right now.

ABR 3: Abbie's Assessment

2011-05-10T23:05:00.000-07:00

The day after Leonid's lengthy presentation at the Pacific Rim International Conference on Disabilities, we met him and Mark (ABR researcher) at the rehab department where Abbie receives her therapy. He was kind enough to meet with Abbie's entire team, who all attended the presentation the day before, to delve more deeply into certain topics, and to assess Abbie. We were even joined by her orthopedic surgeon for an hour...a stunning amount of generosity, given his very crammed schedule.

We took video of the assessement, but I have not seen it yet - so, this will be from memory. It won't be hard though, because the highlights (or lowlights) were searing to receive.

I. The Value of Stillness

Traditionally, we always look for the culprits to "retrain"..those loud, noisy, bullying muscles. If an electro-myelograph is done, the large muscles literally scream for attention so insistently that it's hard to focus on anything speaking more softly, and impossible to consider those not speaking at all.

Leonid came up with an apt analogy for this: a foreigner, previously unexposed to the USA hears only the 50 or so congresspersons who hog the media, and adds to that the input of our outspoken stars and starlets, and comes away thinking he understands the whole of what America is about. That is what we do when we figure out the body by paying attention to those parts that wail for our attention. Both views are utterly incomplete, inaccurate, and lead us to all sorts of false conclusions.

The connective tissue, on EMG, is silent, going about its tasks in the unassuming way that results in invisibility. Not only do we listen for the shouts and ignore the silent tissues, but we look for the movements. If a part of the body is not designed to move, we pay it no heed, never thinking that the stillness may be critical to overall function, and its loss a key barrier to health.

As you sit reading this, place one hand gently on your trachea (windpipe) - then, turn your head to the right and left a few times. How far out of midline did your trachea move? Not at all, right? THAT is stillness, so taken for granted that we don't even notice or appreciate it.

The support structures of Abbie's neck have collapsed so completely that her trachea moves all over the place. When her head is turned to the left, it is deviated to the right, and vice versa. The weakness in her neck is apparent once you know that bulging is an obvious sign. Because her trachea is not anchored by the connective tissue and ligaments, she prefers a head position that makes it easiest to breathe.

Think about gasping for air after a sprint. What do we naturally do during the initial recovery? We throw our heads back and gulp in the air. This is part of the reason she prefers what we call a "nose in the air" position (the other part will be explained later). So, when well-meaning people reposition her head to look straight forward at midline, she feels her airway being somewhat restricted and turns her head to the side to relieve it. I've always been told it's a neurological thing - this preference for head-turning. Yea...not so sure that's the whole picture now.

Abbie has lost the stillness not only in her neck, but at the upper parts of her thoracic cavity (chest). She is not using the upper lobes of her chest much at all, which has turned them into a "sewer". We cannot even start doing ABR on her upper chest until we get other areas strengthened in order to drain the swamp, otherwise she will be overwhelmed.

Understanding the ramifications of stillness, and its loss, made me appreciate connective tissue even more.

II. The Answer to the Secretion Challenge

Everywhere Abbie goes, her suction machine goes. Airport security absolutely stresses me out, because they insist on separating the girl from her mechanical pal -- and even 10 minutes can be too long sometimes.

It wasn't always this way. After she was decannulated, we didn't even turn it on once for 3 months, until she got a cold. Since then, our constant companion has seen progressively more use. I have wracked my brain to figure out what I am feeding her that may cause secretions. What is in the air she may be reacting to? Reflux meds made no difference. This has been one mystery that has almost driven me mad.

And then, here comes the simple answer from left field. Everyone's lungs make copious amounts (30 liters or so) of secretions each day to keep the lungs lubricated. We have the pneumatic and hydraulic pressures and capacities to pump these properly through the system. They are partially dispersed by seeping through (under pressure) from the thoracic to the abdominal cavity.

Well, Miss Abbie's pumps are no longer working, resulting in the pooling. The collapse of her tissue has made it very dense so seepage is not possible (and there isn't adequate pressure to push it right now anyway). Hence, the only way she can clear her lungs is to excrete it through her mouth and nose...often. How thankful I am, then, that she has a strong cough -- which she showed off to Mark and Leonid, resulting in a "cough zone" reminiscent of a Gallagher show.

So, much of her secretion challenge is mechanical....partially related to reflux caused by weakness (I think), and partially related to the "extreme weakness" of her respiratory system.

Those words in quotes were hard for me to hear, as I have felt it coming, but didn't know how far she had sunk.

Leonid had us get on one side of Abbie as she was lying on her back, and then reach to the far side of her chest with both our hands. We compressed her chest with both hands, and it folded like fragile butterfly wings. My throat clamped shut and tears came.

Her ribs are no longer oriented parallel to the ground, but are more vertical, so that as force comes up from the ground as she is sitting, she doesn't have the mechanical structure to handle and distribute the force properly. It's like injury on top of insult on top of impossibility...

Later that evening I overheard Leonid tell someone that Abbie's respiratory system is "hanging on by a thread." Ugh.

III. Fake Versus Real

Leonid sat Abbie at the edge of the massage table and held her at the bottom of her ribs. She was sitting pretty well, and we were happy with that....for just a second. Then he pronounced, "This is fake."

She was not using strength to hold herself up, but rather was relying on a restriction in her lumbar spine that prevents her from falling forward. Great...so all this progress we had been seeing in this area was only her tapping more deeply into the inflexibility of her spine. Useful, smart...damaging.

It's a great way to keep her from face-planting when seated, but as the restriction deepens through use it pulls down on the back of her skull -- the other factor in her "nose-up" preference. As the downward pull has been tilting her head back, her jaw assumed a more open position. So much so, in fact, that location of her of molars drifted so that currently, even if she wants to close her mouth, she can't because her back teeth meet before her mouth closes.

The more we practice sitting with her, the more we enhance the fake and prevent real strength. What a conundrum. He made sure we realized that as we progress through the ABR process, there will come a time when that restriction releases, but strength has not been built up yet. In other words, there will be days of face-planting. Never thought I would look forward to that, but I do now.

The whole "fake versus real" issue looms large when we think about little ones who may have been born with challenges. A mother's intuition may be prodding her, telling her something is not right. But, if her baby "meets milestones" in reasonable amounts of time, she is told her child will be OK.

But, what if a child is holding his head up via a restriction or spasticity (fake) instead of strength (real). What if instead of rolling (real) he is flipping (fake)? These differences take trained attention and the right paradigm to notice, but ignoring them allows a child's challenges to slip by under the radar until perhaps years of opportunity have drifted by.

I acutely felt the loss of those years when, later that evening, Leonid saw a large photo of Abbie on our piano. "How long ago was that taken?" He asked.

Hmmmm..I had to think for a moment....three years.

"Wow -- look how much better she looked back then," he said.

Ouch. The truth stung hard.

Pulled down by the head tilt and let go by the tissue collapse, her face has seemingly slid down her skull...her cheeks are smaller and her jowls are bigger. It is harder for her to smile. I did see all this happening, bit by bit, and I felt helpless to stop it.

It's strange to be sad as I look pictures of her as a four-year-old. It used to be that only pre-drowning photos could stab my heart. But, now I see how far she has gone in the wrong direction from those early years. Oh, I wish I had known what I know now.....but I remain thankful that I have learned in time to help her.

There is even more we learned, but I will save that for another post, as I have to go, and I'm sure you do, too.

Just one little "Abbie-ism" I have to share first. The day of evaluation was all about "weakness, extreme weakness, and profound weakness" all over Abbie's body. At bedtime that night I could tell she was distressed, and took a chance that I knew what it was.

"Abbie -- I know that today everyone kept saying over and over how weak you are. But, you know what? You are strong where it counts! Everything else can be fixed, but you are strong in your heart, and in your spirit and that is what matters."

A smile came, and sleep followed soon after.

She always has been, and remains....strong where it counts.

ABR 2: Stress Shielding and the Vicious Cycle

2011-05-05T23:29:00.000-07:00

As we begin to make the mental shift from force generation (muscles) to force transfer (connective tissue) as a target for therapeutic interventions, one of the first things we need to realize is that the body of a brain-injured person, or pa erson with CP, is a mix of strong and weak tissues, often in combinations that boggle the mind.

Traditionally, we have been obsessed with the strong, bullying tissues. We give medications to relax them, do surgery to release them, inject Botox to paralyze them, but never really give a thought to the other side of the coin. How do we strengthen the weak tissues? I envision it at somewhat like the challenges in classrooms today. Do we keep the class moving along together by holding back the bright children (easy) or strengthening the challenged learners (difficult)?

We've focused on the strong partially because we have had no means to strengthen the weak. ABR gives us this opportunity, but it doesn't mean the strong tissues are going to give up without resistance. In fact, they have become so adept at their roles, which in some cases are helpful to the person although ultimately destructive (like the high muscle tone that may help a child sit, but will eventually contort the spine), that we must sneak past them to build up the weak tissues.

This is a rough picture of something called "Stress Shielding", where the strong tissues absorb incoming mechanical stresses to protect the weaker tissues, and in the process become even stronger while the weak tissues continue their decline fomented by neglect.

In a normal body, there is a cycle of tissue remodeling that looks like this, what Leonid has termed "The Virtuous (Sustainable) Cycle":

This cycle can continue in a positive, healthy way because when mechanical stress enters the body it is sustainably and efficiently distribute by and between tissues that are balanced. This well-distributed stress is then used to maintain the vitality of the tissues appropriately, so that the cycle can continue.

In a person whose tissue are a mix of strong and weak, the cycle looks like this:

I know the words on the outside of the circle are hard to read, but they are the lists of interventions that are typically applied to counteract the negatives at each of the stations of the circle. Usually, they are of little to no avail in moderately to severely impacted people, and so their movement through the vicious cycle continues.

You can jump in at any point on the circle and envision what happens. Say that you start at "irregular muscle activation" -- this pattern of use leads to tissue remodeling that reinforces this negative pattern...reinforcing the underlying mix of strong and weak. With the tissue differentiated this way, stress shielding kicks in, as the strong absorb the lion's share of mechanical stress, and deprive weak tissue of the stress they need to get stronger. The disparities between the tissues lead to internal force imbalances, with the strong tissues being strengthened even more by the imbalance. This leads us right back to irregular muscle activation.

Look, many physically disabled people have a very high "Motor IQ"...being so limited they are endlessly creative and persistent in finding a way, any way, to make their bodies accomplish what they desire. If "irregular muscle activation" allows them to use a communication device or control a power chair, it's very difficult to say , "Hey, try not to use your body in that way -- it's a destructive pattern."

But, we are not just talking about voluntary muscles, we are talking about all tissues, so halting this destructive cycle is not about "retraining muscle movement". It is ongoing 24/7, even as a person is apparently still, or even sleeping. The only way to reverse it is by strengthening the weak tissue, to balance the force distribution and negate the stress shielding response.

A good visual analogy of stress shielding is to align a length of steel cable next to an equivalent length of rubber band. As you stretch them together, you know that they will only reach the length of the steel cable, which will be absorbing all of the stress. The only way to introduce stress to the rubber band is to work around (without) the cable.

How can we do this in the body? Our first instinct, when trying to provide mechanical stress to deep fascia, is to press harder, to make sure the stress reaches far enough. All we are doing with this approach is activating the stress shielding response and strengthening the strong.

We have to go gently in --- so gently that the movement is almost imperceptible. It truly is like sneaking in under a wire. ABR aims for a 1-2% deformation of underlying tissue. To compare, range of motion exercises and fascial release generally aim for 3-8% deformation. Beside activation of stress shielding, there are a couple of other challenges with this higher range.

Tissue deformation at 3-8% is the introduction of microtrauma to the tissues. This is how healthy people get stronger. When we push ourselves at the gym, our muscles respond to the microtrauma by getting stronger over time. But, recall that people in the moderate to severe range of impact are metabolically broke -- they can't afford to fix microtraumas, especially not on a daily basis (as range of motion is often prescribed) and in many areas simultaneously.

Secondly, to achieve gains from range of motion exercises, they must be applied to the very end of the range. This gets rather technical and challenging, and is a skill difficult to easily and effectively transfer into the hands of parents and caregivers.

So, ABR provides a fortunate confluence of variables: the 1-2% deformation of tissue sneaks past stress-shielding, doesn't induce physically-expensive microtrauma, and can be safely accomplished by lay people. And yes, this small window also means that it takes time and repetition. ABR is not a quick fix, not even a moderately-fast fix. It is a long-term, one small step at a time approach.

But hey, our brain injured loved ones are never standing still...they are either getting better or worse each day. So, I am more than happy to take small steps, as long as I know they are in the right direction.

I know this was a really long posting....now that I've given you the "why" of the ABR technique, tomorrow I will delve more deeply into the "how"

ABR 1: Lavish versus Thrifty

2011-05-02T12:30:00.000-07:00

In researching ABR I watched hours of video, piecing together the theory and application as best I could. It was a great relief when Leonid, while visiting Hawaii, framed it in a way that made it immediately relevant and clear. He introduced us to the concept of “Lavish” versus “Thrifty” rehabilitation.

The most expensive things in the body are the muscles and the nervous system. They require a lot of effort to use, and the body expends a lot of metabolic energy to meet their demands. Most traditional rehabilitation focuses on one or the other, or both simultaneously as therapists, parents and aides attempt to stretch and “retrain” muscles, and give sensory and cognitive input in hopes of eliciting output.

A healthy person has adequate reserves to meet the needs of the muscles and nervous system. Some injured people also maintain enough of a metabolic “bank account” to write the energy checks these systems demand. But, in the case of the most injured people, a systemic collapse has drained their reserves, and they are unable to meet the demands of these expensive systems.

So, asking a very injured person to use the most expensive means is analogous to asking a girl without money to buy rice, to purchase steak in order to recover. Not only is it not feasible, but the attempts to use the expensive systems leave an injured person in deeper debt, in worse shape in many ways.

The connective tissue of the body, on the other hand, is extremely cheap, or "thrifty". It makes almost no metabolic demands on the body, nor any cognitive demands. It is ubiquitous - found everywhere in the body. It covers, and actually invests itself, into bones, muscles, and organs. It is the major support structure within the body. It is also completely passive, very unlike the contractile properties of muscles. So, it requires a mental shift to begin considering how to strengthen connective tissue.

To begin this shift, we can observe what happens when it collapses. A healthy person has two major "balloons" supporting her core, one in the chest and one in the abdomen. Those balloons are contained by (or even created by) connective tissue. When a person is subjected to a significant neurological trauma (either in utero or after birth at some point), the connective tissue begins to collapse.

[Side note: the thoughts within these brackets are mine, not Leonid's. Not sure if he would agree or not. Many have asked me "Why does it collapse? The first factor, I believe, is hormonal. Cortisol is a stress hormone, which destroys connective tissue after prolonged, elevated exposure. After brain injury, typically a person's cortisol levels go through the roof. Abbie's were still extremely elevated two years after her injury. There a not any really good ways to bring cortisol levels down, although DHEA supplementation can help. I have chosen not to give DHEA to Abbie at this point, because she is still pre-adolescent, but she does get pregnenolone.

The second factor is a vicious cycle. Tissues remain strong and vital by being stressed mechanically -- by moving and bearing weight. As a brain-injured person becomes locked up by spasticity, healthy biomechanical stresses become difficult to provide. Tissues weaken, fluids stagnate, and the entire system begins a gradual but steady decline. When the tissues weaken, the balloons of support act just like balloons that have been pricked, slowly losing the pneumatic pressure needed to support the core of a person.]

Once the balloons of support collapse, all the joints begin to move into the wrong places. Stepping back for a moment and realizing this makes the arrogance of our "movement retraining" approach apparent. Once a body is contorted, the person lives in what Leonid calls the "proprioceptive jungle" (proprioception is how the body perceives it's position in space and movement). Because joints are not in the proper places, nor functioning normally, the input given is altered.

We, on the other hand, blessed with healthy bodies and normal proprioceptive capabilities are "urban dwellers". We then approach the jungle dwellers and attempt to teach them how to hunt in the jungle. Just because we know from our experience how a shoulder "should" work, we think that helping a jungle dweller is as simple as forcing his shoulder to work the same way, through stretching, assisted movement, and medications. Helping a starving native tribe by telling them to google "gardening tips" makes about as much sense.

In the weeks and months after a brain injury, much investment is made in the lavish methods of rehabilitation. For those fortunate enough to have the resources to utilize these investments, recover comes in differing stages and depths. However, for those not so fortunate, the lavish efforts produce nothing worthy of comment nor celebration while in the meantime, the connective tissue collapse pushes them further from health. This points to the need to differentiate between degrees of injury -- "brain injury" is far too broad of a stroke to adequately address the varying needs.

The graph below was produced by a group in Hamilton, Ontario Canada who followed children with Cerebral Palsy for 21 years to see what levels of motor function they were able to achieve. Although this is geared for CP, I think it is instructive when we talk about motor recovery in brain injury in general.

Prognosis for gross motor function in cerebral palsy: Creation of motor development curves. Journal of the American Medical Association, 288 (11), 1357-1363 Rosenbaum, P., Walter, S., Hanna, S., Palisano, R., Russell, D., Raina, P., Wood, E., Bartlett, D., & Galuppi, B. (2002).

As you can see, "Level 1" is the least affected, while "Level 5" is the most affected. Lavish methods may be effective for Levels 1 and 2, but for Levels 3, 4, and 5 they are increasingly less effective. It is often tempting, after seeing progress in a Level 1 or 2 person, to replicate the approach in a Level 3, 4 or 5 person, while thinking, "Well, we may not achieve as much, but at least we may gain something."

Unfortunately, since the lavish approach bankrupts the Level 3, 4 and 5 people, not only do they not achieve gains, but they make things worse.

The collapse of the connective tissue has great impact on the respiratory system, the digestive system, as well as posture. I can tell you that every parent of a spastic quad child is dealing with challenges in all these areas. Normally we are given medications (nebulizers, inhalers, anti-secretion, anti-reflux, digestive motility aides, anti-spasticity) and all manner of splints, braces and supports. What we are not given, unfortunately, are solutions. Our children continue their declines at rates that seem to accelerate over time.

I sit here typing on the first Monday in May....the day Abbie drowned seven years ago. Through these challenging years I have often comforted myself by saying, "My daughter is not an oncology patient. I am not beating back something trying to kill her." But, in the last six months, I have realized that comfort is an illusion. She is dying, more rapidly each day, as her respiratory system begins to cave under increasing strain.

Leonid's in-depth evaluation, which I will describe in a separate post, was exquisitely painful for me, as he confirmed my fears, and shone a bright light on things I'd only seen as shadows. I try not to regret only learning about all of this now, avoiding thinking about the beautiful, strong body that has disintegrated over these years. It will be a long road out of this valley in which we find ourselves, but we are walking anyway....only, now I have confidence that perhaps we can change the direction.

More to come on typical results of connective tissue collapse, how to strengthen it, and the physical barriers we have to work around.

Risen Indeed!

2011-04-24T20:43:00.000-07:00

Holding the precious lei presented to her by her beloved (and lovely) Auntie Merle at church today. I only wish you could smell it!

I really, really, really LOVE my dad!

...and my puppy really loves me!

Easter 2011....the boys still hate taking photos!

With 3/4 of my sons....we missed you Chase!!

Easter provides me, at last, respite from a week that has left me feeling like I've lived through seven days of spin cycle. I don't think it a coincidence that as I celebrate the sacrifice that has led to new birth (Oh, Death...just where is your sting???), the birth of new insights, paradigms, outlooks, and plans with regard to Abbie's body is calling us to somber recognition, determined sacrifice and faith-based rejoicing.

I met Leonid Blyum, the inventor of ABR, and researcher Mark Driscoll, at their hotel one week ago. I was slated to introduce them at the Pacific Rim International Conference on Disabilities the next day, so I wanted to touch base to see if there were any particular things they wanted me to highlight.

OK -- that was part of the reason. The more honest explanation is that I wanted to check them out. I had invited numerous people to the conference to hear them, and wanted to know ahead of time if I'd made a huge mistake. Within five minutes, those concerns evaporated, and I knew I was in the company of men who were going to stretch my mind, and hopefully, change Abbie's path.

I have learned so much this week, and feel compelled to share it with other brain-injury families. So, I will break it into installments. Yes, it is about Abbie, but from the beginning, where possible, Ray and I have committed to make this journey matter for ALL children who are in Abbie's position. Thankfully, what I learned about Abbie this week translates very easily to all children recovering from brain injuries.

I will be writing about: The "Lavish" versus "Thrifty" approaches to rehabilitation [which explains the basis for ABR, and also why traditional rehab doesn't work for severely impacted people]; the differences between CP and acquired brain injuries in regards to physical rehab; the value of stillness; why we can't solve the secretion problem; Abbie's biggest challenge (which is not unique to her), "Fake Strength", and where we go from here, as a family and as a state. So, stayed tuned for all that.

On this day, though, our thoughts go to our families spread out on the mainland, and to friends we've been blessed to have far and wide. With such a profound reason to celebrate, we wish we could all be together today....but, that Day is coming!!

God Bless.

A New Throne

2011-04-08T12:54:00.000-07:00

I just received pictures taken of Abbie while we were making the mold for her new wheelchair. They give a good idea of what she will look like when she does get her new throne, eventually.

In this first picture, the therapist's hand at the back of Abbie's head is doing the job of a head rest, so this is how Abbie will look from the side when seated:

The mold will have full contact with her back, pelvis, ribs, and legs, so she will just need a lap belt to help keep her safe, most likely. Quite a difference from the lap/lateral/chest strap contraption we have to use now!

Being seated in a position that allows her to look straight ahead rather than at the sky, as her current chair positions, results in much more visual engagement from Abbie.

Once we had a good shape around her, we took her out and they filled the whole mold with plaster. So, a perfect copy of Abbie's little okole is sitting right now in the rehab department, waiting for the green light to be sent off to the seating company.

Here's a snapshot of Abbie right before we went on our very short walk in the woods during out trip to Washington:

Abbie and Genevieve, at what ended up being our turn-around point. Notice how different Abbie looks seated in this chair opposed to the mold above. She's tired of looking at the clouds!!

Please continue to pray for Genevieve's mom. They have been able to extubate her, she has spoken a few words, but it extremely weak, very disoriented, and it the very early stages of what is going to be a challenging journey of recovery. If she is anything like her daughter, though, there is MORE than enough fight in her spirit to make it back.

Living With an Enlarged Heart

2011-04-04T00:08:00.000-07:00

Many times, as I meet someone, or as someone I know first learns about the details of Abbie's journey, one of their first sentiments is, "I could never make it..." Before it happened to our family, I thought the same thing. But, one of the things I've learned is that extreme trauma, grief and challenge don't have to break your heart permanently, but they do change the shape of it forever.

The basement expanded by the flood of tears is matched in scope by the altered top floor with improved views of grace, joy, and love. Nothing is ever the same -- and for that, in fact, I am utterly grateful. The lows are truly lower than I can describe, but are matched by equally unfathomable highs. Living with an enlarged heart means that each day may include volleying back and forth between the two several times. That was certainly the case this week.

Gratitude

Abbie's adventure has led our paths to cross with the most amazing, kind, compassionate people, and I'd like to introduce you to a group of them I met this week.

This photo is the second-semester carpentry class at Honolulu Community College, with their instructor Dean Crowell (blue shirt with white stripes).

A couple months ago, when a group of six families was working at warp speed to bring the ABR therapy to Hawaii, we were trying to figure out how to build special ABR "benches" for each of our kids. We could not proceed with the pilot group without them, but there wasn't a carpenter in our group.

One of the moms, Shari, had the brilliant idea to call HCC to see if it would be an appropriate project for them. Immediately, James Niino, of HCC asked for more information, and within a couple of days said, "Sure, we would love to do it!"

It's hard to describe what a relief this was. James would have the carpentry class build the benches, and then the families would only have to upholster the padding and sand and finish the bench. The plans we'd received from Montreal were not completely clear, so Dean Crowell used his expertise to fill in the blanks, and we planned to pick up the benches on April 1.

In early March, James called and said...."You know, as we look at these benches, the upholstery is going to be pretty tricky. So, I've talked to our upholstery instructor, Donald Frost, about it -- he is going to donate the foam and vinyl and they will do the upholstery."

Another big sigh of relief! All we would have to do was sand and finish -- that, I felt pretty confident, we could do.

Kyle and I went to pick up the benches on Wednesday, and got to meet the whole class. As I looked at the benches, I noticed they were pretty shiny for unfinished wood. Only....it wasn't. They had finished them for us, too.

I was pretty overwhelmed by their thoughtfulness, and tried to explain to the students what their work meant. I failed utterly at eloquence, and just said the benches were for a special therapy for many children who used wheelchairs, in the hopes that one day they wouldn't.

It was a humbling experience where my spirit just drank in the compassion of others. Hawaii is a very special place, and as one of the students told me, "This is what we do for each other. We are ohana..."

Mahalo Nui Loa to James Niino, Dean Crowell, Donald Frost, and their students -- you've built more than six benches, you have bolstered the spirits of six families who are each on a very long trek.

Joyful Anticipation

"Always for a reason" is what I've learned about delays. I try to hang on to that lesson when frustration and impatience creep in. Many hours this week were spent in appointments about Abbie's future wheelchair.

On Tuesday I met with a local vendor, Frank, for almost three hours to talk about Abbie's seating needs and the right power base for her. The most powerful insights came when Frank let me drive a couple of power chairs down the hall to experience the difference for myself.

Observation #1: driving a power chair is not as easy as it looks. In fact, I was pretty horrible at it (which in no way relates to my car-driving ability:). It gave me a lot of empathy for what faces Abbie as she learns to control one with her head. Generous amounts of time and patience will be needed; avoiding expectations of her hopping in and taking off in a matter of weeks.

Observation #2: the seating Abbie needs cannot be made by anyone in Hawaii. The insurance company does not agree yet, but we're working on it. In very good timing, the vendor from San Diego, Kevin, was here again this week. We took a new mold of Abbie's body, since she has grown since the last one was taken in December and we have no idea how long the approval process is going to take.

The mold we got this time was even better than the first one, and seeing her sitting in it was a joyful moment...truly, she looked like a big, smart, independent girl. The word "baby" didn't cross my mind. It often crosses the lips of other kids who see her being pushed in her wheelchair, which is one reason I am hoping Abbie will get a power chair soon.

We're still working through the process, but truly covet your prayers, as we haven't even made it past the administrative review yet....they won't start picking the request apart for medical necessity until we're past the admin hurdle.

At the same appointment, we took a mold for a custom-fit side-lyer for Abbie to sleep in. Honestly, I was a bit ambivalent about this equipment, because it will be big and bulky. But, once I saw Abbie relax as the mold closed in around her...well, I don't care if it's a baby elephant if it will help her sleep well and get her spine into the best position! This will be a boon to our effort to prevent scoliosis.

An enlarged heart captures rays of joy that may fly above houses not yet renovated by trial!

The Volley

As we walked out of the mold appointment, I saw my little friend, Hailey, sitting in the hall. Her mom and I have struck up a hallway friendship over the years, as we are both Rehab frequent fliers. Hailey had an aggressive brain cancer, and required a surgery from which most children don't recover their speech or ability to walk.

Hailey's mom burst into tears of joy when I told her about Abbie's power chair. I did the same when she told me that Hailey's port was being taken out, and we marveled at her pink cheeks, regrowing hair, and ability to run down the hall, sporting a little chub around her tummy. What a far cry from the wan, weak, silent girl I met as she leaned on a tiny walker.

Hailey was struggling to open her milk, so I sat down to help her. "Hey!" I said, "You got your port out, didn't you?"

Now distracted by opening the straw, Hailey didn't really look up when she said, nonchalantly, "Well... I was going to, but before the surgery they had to do Xrays, and they found a tumor on my spine."

I tried not to shriek or cry in front of her as the air was sucked from my lungs.

Her brother, Zachary, came bounding down the hall, eager to spring April Fools' jokes...which included telling the staff he didn't have school that day. April Fool's! Followed by his sing-song voice saying, "But, Hailey really didn't have school - she had chemo instead."

My head was spinning as I realized it was all starting again for them. Fortunately, I suppose, Hailey's dad was with her, as I think I would have dissolved upon seeing her mom.

An enlarged heart, knowing by name what lurks in the basement, does suffer more acutely as those they care about are called to descend the staircase once again. Please, please pray for sweet Hailey and her family.

The Promise

As we were finishing up our Spring Break trip last weekend, Genevieve got a very strange message on her phone. Her friend, Maria, was calling to check on Genevieve's mom because she was expecting her hours earlier. Maria lives in Ewa, which is quite a ways from Genevieve's home in Waimanalo. Her mom had been riding the bus to Ewa when she fell asleep. After she'd been riding for four hours, asleep, the driver tried to rouse her. She was unresponsive. Genevieve's mom had a stroke at some point before she reached Ewa, but hours had passed since then -- critical time for stroke treatment.

Genevieve's mom has been on a ventilator since last Sunday. Although it seems that perhaps the imminent threat of her passing has abated, the picture remains very unclear. Would you join us in prayer for her healing, and for comfort for Genevieve and for her seven sisters and brother in the Philippines?

An enlarged heart knows that it knows that it knows that all His promises are true, and we cling to these with both determination and trust as new storms come.

May the Lord bless you, and may you welcome heart-renovation, even if it comes in overwhelming, painful packages. The Contractor can trusted, and the results will be worth it!

Wishes (Come True) and Wings (Of Her Own)

2011-03-14T21:19:00.000-07:00

I am delving as deeply as I can into my soul to find words to describe Abbie's theater experience yesterday. As you can see above, she made a lot of new friends....but if we start at the end and not the beginning, you may not understand why I was taking that photo through tears.

Keiko is the eldest daughter of our precious friends, the Oda family (she is the blue fairy above). Her mama, Sandra, invited Abbie to the Friday morning production of "Wishes and Wings", a play about a young fairy hoping to get her wings. Unfortunately, Friday morning found most of Hawaii shut down due to the tsunami warning the night before (pray for Japan!!!)

I thought we were out of luck, and was so thankful that after many iterations of disappointing my daughter, I'd learned the lesson...I didn't tell Abbie about the play, so she wasn't sad. In fact, she was still grinning on Friday from getting to sleep in Daddy's spot on the bed, since our bedroom is upstairs, and Daddy had to work all night during the emergency. What an adventure.

Sandra emailed and told me there was another show on Sunday...woo-hoo! She also mentioned that Abbie may get to meet some of the cast after the play -- what a treat.

The entire day was perfect. We pulled into the parking garage, and immediately found plentiful handicapped parking. You fellow drivers of rampvans know what a huge deal that is! As we entered the theater, we asked for handicapped seating, and each usher was so kind. They initially seated us in a very nice section about 3/4 of the way up the theater, with lots of room in front of us. As the usher looked at Abbie, though, she noticed that her chair positioned her head to make her look up, not straight ahead.

"You know, we could seat her in the front row, so that as she looks up, she will be able to see everything." What compassion!

So, to the front row we went, to what turned out to be the primo spot. Abbie could see each of the radiant fairies, with their fantastic make-up, we could laugh with the silly turtle and seal, and she jumped a little at the scary spider. Best of all, at the point in the play when the bubble machine kicked in, I think most of them landed on her. She was thrilled!

I was transfixed by the lead fairy, "Blossom", a young one trying to get her wings. Yes, I was impressed by her voice and poise, and was drawn in by her character. But, mostly, I could not get over how much she reminded me of Abbie....very spunky, a little sassy, beautiful curls, and a sense of adventure. In the end, she got her wings because she chose love.

One song that Blossom sang went something like this: "When I get my wings, I am going to do a hundred thousand things."

I wondered how often Abbie serenades herself with a chorus similar to that.

We clapped and cheered as the colorful cast took their bows. And, then Sandra came to me and said, "Doesn't Blossom remind you so much of Abbie??" I had to smile at the validation. My heart was pretty full by this point, so I was unprepared to hold back tears as the cast began to encircle Abbie.

They all knew her name, and were giving her lei! Oh my! Not only were they taking the time to greet her before they went outside to greet all the other patrons....but they had known she was coming. Not just some little girl in a wheelchair, but Abbie.

And, then Blossom stepped forward...

Having just earned her own wings, she wanted to present Abbie with a pair of her own, too.

Here is sweet Blossom, and her newly-winged sidekick:

Abbie was then presented with a beautiful flower by one of the "Boy Fairies" as we called him:

They made such a beautiful fuss over her that I felt completely incapable of thanking them, and only hope that they have an inkling of how deeply their thoughtfulness, time, and attention meant to Abbie and her mommy.

As we walked to the car, we stopped to give Abbie some medication. As I moved the lei on her lap, I noticed that one, composed of easter eggs, had a heart-shaped card attached. I flipped it over to read this:

To Abbie - The girl who can fly,

"I can do all things through Christ who strengthens me. Phillippians 4:13"

Love, the Fairies

The girl who can fly -- how much that touched my heart. I know in her dreams she does, and I pray fervently that the freedom she finds in the hours of slumber see her through the daylight hours of restriction.

After receiving it so abundantly yesterday, I can say yet again, "Love Always Wins!"

Abbie and Keiko

With our deepest, from the tips-of-our-toes thanks to Abbie's beloved Auntie Sandra, who is always thinking of ways to include her and make sure she has a big life.

Full Steam Ahead

2011-02-28T21:41:00.000-08:00

Today was another big day for our driver-in-training. At therapy, we seated her in the power chair, headed to the elevator and went downstairs, to a broad, uncluttered hallway. Then, we said, "Go!"

And boy, did she.

She controlled the forward motion of the chair with a sensor placed directly behind her head. As she was almost down the entire length of the hallway, I began to wonder if she either didn't understand how to stop, or couldn't do it it.

Has she taught me nothing?

Of course she knew how to stop, she just didn't want to. Once we assured her that she could stop and start whenever she wanted, she showed off her stopping skills. As the minutes of practice added up, she became able to start and stop in rapid succession.

I played a game with her, by standing in front of her a ways away, and letting her drive up to me and stop before she hit me. Let's just say that it's still a work in progress, but I did tell her that it was the best "first day of driving" in our family so far (no offense, Chase and Kyle).

At one point we all stepped away and let her really feel independent as she drove. I was in front of her, and an image from several years ago flashed in my mind. A couple of years after Abbie's injury, we were in the hall waiting for our therapy session. A young girl and a therapist emerged from a room, and the therapist placed large, colored plastic dots on the floor. The girl, an emerging walker, had to practice walking from dot to dot while keeping her balance. Oh, how deeply I longed for Abbie to progress to doing therapy in the hall, from dot to dot.

I felt again today, that our prayers are often answered in ways we could not have imagined. Would I rather have Abbie walking? Of course. But, I realized what I truly desire for her is independence, and I saw a glimpse of it today -- doing therapy in the hall at long last.

As far as her power chair request goes, I was notified last week that the insurance company had contacted a local vendor to see if they could put together a chair like the one we had requested, and they replied that they could. This is not possible, because there are only four authorized vendors for the seating system Abbie needs, and none of them are in Hawaii. The seating is critical to making everything else work, so I became anxious when I heard this news.

Then, I thought, "Wait...back up for just a second."

If the insurance company is negotiating about what vendor is going to supply the chair, and they haven't pushed back on any components of the chair...well, it sure looks like the actual request has been favorably reviewed. Wow!! I am still holding my breath until I hear something officially, but I am very encouraged.

One other update, regarding the ABR therapy I wrote about recently, and for which we continue to raise money. The original visit from the ABR team was scheduled for later this week, but at the beginning of February it became obvious that there were too many loose ends and too little time to ensure a successful initiation of ABR in Hawaii. So, we have postponed it. But, we are thrilled to be welcoming the inventor of ABR, Leonid Blyum, and the principle investigator (lead researcher), Mark Driscoll to Hawaii, for the Pacific Rim Conference on Disabilities, April 18-19. We will also be conducting follow-on meetings with stakeholders in the community to see how we can best launch a community template for ABR in Hawaii.

If you are in Hawaii and interested in learning more about ABR, the presentation will be on Monday, April 18, 8:30-12 at the convention center. There will be special pricing of $85 for family members wanting to attend only the ABR portion of PacRim. Professional registration is $165 for one day.

You can register here:

http://www.regonline.com/Register/Checkin.aspx?EventID=879207

Note: the family special is not yet available at the PacRim website. If you are interested in the special pricing, please email me at varasix@aol.com

May God bless you!

Pray for Abbie's Friends

2011-02-15T13:37:00.000-08:00

I have dreaded opening emails and checking Facebook this week because so many of my near-drowning mom friends are describing very challenging, threatening situations with their children's health. Some of the kids are sicker than they have ever been since their initial injuries.

Could I ask you to specifically pray for:

*** Caleb: He had a very long febrile seizure the other night, ended up with collapsed lung(s) (?), and is in the PICU on a ventilator today. He is very, very sick and the doctors have not been optimistic. It seems from a recent update that he may be stabilizing a bit today, as far as blood pressure, but he remains extremely fragile. It appears he has a very bad pneumonia.

Caleb and his family are precious to us because they are here -- we see them at therapy, around town, and it's nice just knowing we are not alone on this island. He has a baby sister who is not quite three weeks old. I cannot imagine balancing everything that is on Kehau's plate right now, so please pray intensely for her, too.

*** Luke: Our little buddy in Tacoma was able to narrowly avoid the PICU this week, but remains hospitalized today, also with respiratory challenges. His mama, Sue, and I have traveled this road together almost from the beginning, and she has become a very special friend and encourager. Please pray that Luke continues his suddenly-speedy recovery, and is able to be discharged today. There is a birthday party tonight for his older sister, Natalie, and I know they so want to celebrate it as a united family.

*** Aiden: I got to meet Aiden's exceptionally creative and crafty mom, Erin, at the near-drowning retreat in November. He is the eldest of three, so I don't know how Erin finds the time to out-cake-decorate Martha Stewart and crochet masterpieces, but today finds her running to the pharmacy and caring for a very sick little boy. Again - respiratory. Ugh. Please pray for his quick recovery!

*** Santana: another little boy suffering from respiratory challenges, with another truly talented and creative mom who focuses on film production. He is the middle of three boys, and I have missed hearing from Lindsey lately as Santana has been too ill for her to be online much. I don't know the details, but I do know that prayer changes things, so please lift him up.

One common theme (and no...it's not the gender)...what stalks our fragile children is respiratory infection. Each of our families know too well that what our children usually die from is these infections that get out of control. The stress, fear, and worry can be overwhelming as things begin to take a wrong turn. I have felt this weight even just praying for these families, so I am asking you to join me, as they just cannot bear it on their own.

God bless you!

A Chance to Change the Future (ABR Post #1)

2011-02-02T09:27:00.000-08:00

Today I offer you an invitation to help change the path travelled by children with Cerebral Palsy and Brain injuries!

I have spent the last few months intensively researching a therapy approach called Advanced Biomechanical Rehabilitation (ABR).

It is:

   * Family-Centered:  changing the model of bringing children to therapy centers for years on end. Parents become the experts, and the therapy is provided in the home.

   * Gentle/Non-Invasive:  There is no danger of hurting a child doing ABR. It is not unpleasant or painful for them.

   * Body-focused: It does not aim to heal, rewire or reprogram the brain. It's goal is to improve the structural and functional elements of the body.

   * Effective: I have never found a physical rehabilitation approach that resulted in gains for children with CP and brain injuries. Perhaps they slow the ongoing decline in the body, but functional gains are rare, particularly in the most affected children. The following video stunned me:

http://www.vimeo.com/6671771

While the changes are notable, a little background will make clear how unusual these changes are.

I found that an NIH-funded study was conducted in the province of Ontario which included every child diagnosed with Cerebral Palsy born in 1992. Some families did everything possible to help improve the physical condition and capabilities of their children, while others did not have the means to do so.

The study found that it did not make a difference...no matter what was done, or not done, the children's path followed an almost predestined curve. The most affected children reached their peak of motor capability at age three, and actually began to decline as they reached 10. Even the least affected children reached their peak before 10.

As a mother I have sensed this curve. I have fought against it, and tried in every way possible not to look it in the face. But, it is real, and, as we have found in these years of effort with Abbie, it is accurate.

And, it is not only the lack of improvement in movement capabilities, but even more pressing are the health issues and invasive interventions that accompany that unbudging curve. When liquid medications fail, we move to injections. When these don't work, it's time for snipping tendons and muscles. When these methods don't stop the contortions, families consent to hip surgeries, spinal rod surgeries and the complications these bring, often while not halting the downward spiral.

We don't make these choices because they result in great outcomes, or "fix" our precious children. We just haven't had any options other than "bad" and "really bad".

Well, my time spent looking into the mouth of the dragon eventually lead me to a third option, "responsible dreaming." It is not a silver-bullet or overnight magic, but ABR offers the family willing to work for it, the chance to bend the curve in their child's life.

If you watched that video, realize that the boy shown falls into the "most affected" category (GMFCS V), so his body should be fairly resistant to attempts at helping it improve.

Weeks of intense research convinced me that ABR will be the best approach to accomplish physical recovery in Abbie. But, over the years we have been blessed to meet families of other special children, and I knew it could really help them as well.

So, instead of flying Abbie to the ABR Clinic in Montreal for the initial evaluation and training, I am putting together a pilot group of families, and the Montreal team is coming here the first week of March. During that visit, they will also provide training to professionals so that eventually, if the results come as we believe they will, ABR in Hawaii can grow to the point of being available for every child who needs it.

So, what is it??

It is a hands-on, gentle, non-invasive therapy provided in the home by family and caregivers. The primary target is the myofascia, and the goals include increasing the volume and strength of the chest and abdominal cavities. It is a completely new way of looking at the bodies of children with Cerebral Palsy and brain injuries...and it's about time!

Outcomes for these children have not changed much in the last 100 years. Splints are now made of fiberglass, neoprene and velcro instead of wood and leather. We can seat kids in shiny pink or bright red wheelchairs, and surgeries can keep their bodies looking more normal. But, they are not regaining function, they are not becoming more physically independent.

That has got to change. While we await the fruit of brain research ongoing in many sectors, we must help our children's bodies to heal and strengthen. That is the mission of ABR -- not fixing brains, but fixing bodies.

For more information about ABR you can go to www.blyum.com, and www.blyum.typepad.com

I hope this is not information overload, but I wanted to give you a glimpse of the new terrain that has us so encouraged. And, I need to ask for your help in making it happen.

The opportunity to have the ABR team come arose suddenly, and we've been working feverishly to put it all together. We have many of the pieces in place, but the big hurdle now is finances. The initial evaluation and 5 day family training cost $1900 per child. We must also raise approximately $3000 to cover the travel and lodging expenses of the team. In other words, we need to raise about $15,000 in one month.

I know that if you are reading this blog, you care about Abbie. Ray and I had planned on doing ABR from the beginning of this process, and will fund her portion. However, we have some incredible, dedicated families who didn't even know what ABR is until December, and certainly hadn't budgeted for it. Would you help us start this pilot group?

If 100 of you out there could find $150 to donate, we would be ready to go!

You can donate at the Chip-in widget to the right of the posting. I will deposit all the money into a newly created fund: The Rehab Family Training Fund of the Kapiolani Health Foundation. This will not be a deductible expense if you do it this way.

If you would like to donate directly to a 501(c)3 for tax purposes, you can send a check to:

Kapiolani Health Foundation

Harbour Court

55 Merchant Street

Honolulu, Hawaii 96813

Please put "Rehab Family Training Fund" in the memo section to ensure the money is routed properly.

I post this update with prayers of thanksgiving for your support all these years, and with hope for the future of many children whose lives will be improved because of ABR.

What My Son Taught Me This Week

2011-01-29T13:40:00.000-08:00

At some point early in this journey several people sent me the poem about a butterfly emerging from its cocoon. A compassionate onlooker sees the butterfly struggling to break free, and helps by breaking the cocoon open and releasing the butterfly. As a result of this kindness, the butterfly perishes. The struggle itself was an imperative part of the process, forcing fluid to move throughout the structures of the wings, preparing them for flight. The absence of the struggle left the butterfly unable to survive.

I have taken comfort in this analogy as I've watched Abbie battle against one layer of her cocoon after another. I've witnessed her spirit being strengthened to a degree I cannot fathom nor express. But, yet, in a corner of my Mother-Heart, I still yearn to help her, to ease the fight, to breach the cocoon for her.

My son, Kyle, is an avid photographer. This week he found a group of bushes at school that harbor dozens of cocoons. As he was snapping away, capturing collections of caterpillars, close-ups of Monarch wings, and the fragility of suspended cocoons, he witnessed a curious behavior.

As a newly emerged butterfly lay wet and vulnerable on the grass, another butterfly would arrive to lift it to a leaf, where it could dry, gain its strength and eventually flitter away to join the community. He captured the arrival of the rescue butterfly in the photo below:

I love knowing the "rest of the story". It doesn't end with a solitary emergence from the struggle. None of us learn to fly alone.

Lovely Locks of Love

2011-01-24T22:16:00.000-08:00

Last Monday, while getting my hair cut, I was thinking that it was time to lighten the load on Abbie's poor head. So, I asked my hairdresser if she could cut Abbie's hair so that we could donate it to Locks of Love, an organization that provides wigs to people in need.

When Nell said, "Yea, sure" and we scheduled the cut for the next day, I got a little nervous. We would have to cut 10 inches off in order to donate it, and I was trying to envision Abbie in a bob. I spent some extra time that night brushing her hair. It really was beautiful, so I tried to imagine another little girl somewhere, taking medication to save her life but sacrificing her hair in the process...the hair that we wouldn't miss, that would grow back in a few months, could make tremendous difference in the life of that little girl.

I spent the couple hours prior to the appointment at a beautiful lunch on the beach with some great friends, which was a wonderful distraction. I was also a little concerned about how Abbie would do during the cut, how I would hold her, if she would tolerate it, etc, etc. But, as soon as I got home it was time to go - no time to dwell on it.

Two of my lunchtime friends, Katie and Liberty, surprised me at the salon - which is why I have pictures to share.

Before:

The Big Snip. Although we only needed ten inches, we took off a little bit more so make the final length a little better. I knew her hair was long, but not this long!

The Donation Ponytail:

Getting her hair blow-dried and styled.

Afterwards. We both survived! Sorry you can't see the style very well. I was hoping the cut would bring out her curls, but the stylist layered and textured it quite a bit. So, it's a lot lighter for Abbie, but doesn't curl as much.

Her hair is still past her shoulders, so it won't be long before we can donate again. Abbie was very excited by the prospect of helping another little girl!

She continues to make the most of every chance she gets to practice with the power chair. We are only going to therapy every other week now, so the opportunities are precious. Today she learned how to turn the chair both ways (previously we only had the right-handed head switch activated). It didn't take her very long to figure it out!

At the end of the session, she had stopped for a moment. The OT said, "OK, Abbie, I am going to turn the chair off now."

Immediately came the mechanical equivalent of "I don't think so" as Abbie commenced spinning again. I love to see her in charge of something, and able to show a little bit of attitude!

God bless!

Memories of December

2011-01-05T12:58:00.000-08:00

A grey fog of illness, sleep deprivation, and stress tinged with sadness consumed December, but now that the calendar has flipped, the haze has receded to reveal some moments worth remembering...and sharing. This may be a bit long, so I will break it into parts so that you can read it in installments if you wish.

Part I: Abbie Passes the Test

Several months ago, one of Abbie's friends, Shari, went to San Diego to have a wheelchair custom-fit for her. I didn't think much about it at the time, other than "I hope they have a nice time at the zoo." Turns out, Shari's mainland adventure may well change Abbie's life.

Kevin, the wheelchair technician that built Shari's chair, delivered it to her in early December. While he was here Abbie had the opportunity to try out a power chair similar to Shari's to see if, as we all believe, she is ready for one of her own.

My confidence heading into the trial faded a bit as the team said they wanted Abbie to control it using a head switch. Hmmmm....she had never used a head switch in her life. Not once. For her to understand that 1) she could control the movement of the chair, and 2) she needed to use her head to do it....yea, not so sure about that. Head control isn't really our thing, if you know what I mean.

I'm going to let the video just speak for itself:

Abbie's Power Chair Evaluation 10 Dec 10

In the span of fifteen minutes we introduced Abbie to the head switch, went through the phase of her just spinning ( and spinning and spinning) because she was so excited about moving, and reached the point where she could spin and stop where she wanted to. In other words: she aced the test!

And, all this happened in a loaner chair that didn't support her optimally!

As you may have noted in the video, the opportunity to move also elicited more vocalization from Abbie. Everything really does all work together.

As we got home after that amazing appointment, I stepped around Abbie to open the door. She began sobbing -- big fat tears, red splotchy face, wailing -- the only times I have seen her like that have involved broken bones and torn ligaments. I wondered if somehow I had hurt her leg with the bag I was carrying.

Nope.

She just wanted the "chair she could move." She continued to cry as I tried to reassure her that we are going to do everything possible to get her a chair of her own to drive. But, I had to be honest and also tell her that these things take time, and sometimes require a fight.

Those pleading tears, though, ensure that we are going to fight this fight no matter how long it takes!

We are working with Kevin and our entire rehab team, and will hopefully submit a request for a power wheelchair AND a computerized communication device in the near future -- both will work with the same set of controls, so Abbie will only have to master one set of movements.

Technology can give Abbie legs and a voice -- watch out world!

Part II: The Nutcracker (Almost) Nightmare

Ever since Auntie Debbie gave Abbie her first Nutcracker DVD five years ago, Abbie has worn out many copies and many versions. She absolutely loves to watch it, and even listening to the music alone makes her happy.

This fall, my friend Nina told me that she was giving Abbie tickets to the Nutcracker for Christmas. I could hardly contain my glee and anticipation. Abbie was thrilled, and commenced re-watching every Nutcracker DVD we have, from Barbie to MacCauley Culkin and the NYC Ballet. This was going to be magical.

Then, at the beginning of December she got sick. And, she didn't get better.

This chest infection kept lingering, and getting worse. It's unlike her to be sick for more than three days, and it had been over two weeks as the Nutcracker date neared. I prayed, prayed, prayed for her oxygen needs to decrease so that she could go.

The weather was not cooperating, as the days seemed to alternate between voggy, steamy grey, and rainy, stormy grey. We had tickets for the Sunday matinee, but by Friday evening she was still not well. I debated calling Nina to cancel, but didn't have the heart to stop hoping.

Knowing what was on the line, Abbie mustered the strength to get off the oxygen, get dressed up, and out into the weather that made us look both ways for Noah's ark before venturing into intersections. It was an u.g.l.y. day, but Nina had sent me a VIP parking pass that would allow us to unload Abbie right next to the theatre, and eliminated the stress of finding an all-too-rare van-accessible handicapped space.

I followed the directions on the parking ticket, but when I approached the driveway, there was a white car blocking it. I pulled in right behind it, hoping it would move. Instead, police lights started flashing in the rear window.

"Where's the VIP parking?" I yelled out into the rain.

"I don't know...you have got to keep moving. Move along - now!" was the none-too-polite answer.

Hrrmph.

I drove around to the entry to the normal parking, and when I handed the parking ticket to the attendant she told me that I needed to go around to the valet. When I explained that there wasn't anyone over there, she pulled out her walkie-talkie and assured me she would have them be out there to meet me.

Tick, tick, tock. It was now 20 minutes to show time.

I went around a very long block again, only to find no valets, and the same white car blocking the road. This time I got out of the van to inquire, since the directions on the ticket clearly said to enter at this driveway.

The officer simply said, "I don't have any idea about VIP parking. I can't help you, I'm sorry. But, I have my orders, and you have to move along right now."

Tick, tick, tock. 10 minutes to show time.

I got in the line to the parking garage...again. I paid to enter, and then slowly wove my way through, only to find that there were not any handicapped stalls left. None.

At this point I began to sob for Abbie. We weren't going to make it into the ballet. I had no idea where we could park, and time was slipping away. I called my friend Nina to let her know, and received a surprising explanation for all the confusion.

"Mrs. Obama is here, " she said.

Aha! Now it all made sense. The "police officer" in the white car was actually Secret Service. The VIP parking had disappeared to make way for secured parking for the Obama entourage. Someone telling me that...or something other than "I don't know - drive around", would have been kind.

As I drove through the rain in desperation I had thoughts that weren't rational, but were real and raw. "That family can see the Nutcracker at any ballet they choose....they could have a command performance at the Bolshoi tomorrow if they wanted. This is Abbie's ONE day, her one special day. Every day is special for them." It all seemed so heartbreakingly unfair.

My phone rang again, and Nina said, "Just hang on. I am going to talk to the Secret Service."

"Yea...good luck with that," I thought. So, I was shocked when she rang right back to say, "They will be waiting for you at the driveway, and will escort you in."

They did. I turned over my keys to them, and we ran through the rain to the entrance. We made it inside, drenched but relieved, to hear the strains of Tchaikovsky's beautiful music emanating from behind the closed doors.

Doors we were then told we may not open. We were too late. The ballet had begun and we could not be admitted after the curtain had been raised.

I was too emotionally drained at this point to even raise an intelligible protest. Genevieve, Abbie, Nina and I just stood there, looking at the door. I was in disbelief, and hoped that somehow having the chance to come to the theatre and hear the music would be enough for this year for Abbie.

Nina was having none of it, swinging back into Superwoman mode, and saying again, "I am going to talk to them."

A couple minutes later they ushered us in, telling us we couldn't sit in our ticketed seats near the stage, but could sit in the back. At first this ticked me off, too, but in the end I think it worked out better because Abbie could see the whole stage.

Once we were settled, the music worked its magic and the desperation of the previous hour melted away into the joy for which we'd hoped. It was beautiful, brilliant, and very, very special. Afterwards, Abbie was ushered backstage by Pamela Taylor-Tongg, the gracious director of Ballet Hawaii.

Abbie was able to meet one of the Spanish Dancers, still in costume:

And, after rolling onto the big stage, she met the Snow Queen. Abbie looked at her with eyes that just said, "I am so in love!!"

With a friend like Nina, overcoming Secret Service roadblocks and usher door locks alike, Abbie was blessed with a very, very special day!

Part III: The Holidays

Our holidays normally begin on 12/23, Chase's birthday. This year was going to be a special one, because he turned 20. Unfortunately, Abbie took a real turn for the worse that day, so Chase's birthday dinner consisted of leftover pizza and chicken wings from the twins' holiday party the night before, and his birthday "cake" was a banana cream pie one of the twins' friends brought to the party (thanks, Nishiyama family!), which Chase had eaten one piece out of. Nice, huh?

Immediately after Chase opened his presents, Kyle and I loaded Abbie up and took her to the ER. I'd spent a good amount of time packing everything else we would need for a hospital stay, since it certainly looked as if my girl and I would be spending Christmas at Kapiolani.

She had spiked a fever, her oxygen needs were even higher, and her secretions were now discolored. Ugh. But, the chest Xray came back negative for pneumonia, and her flu swabs were negative as well! Woo-hoo! When we go to the ER my rule generally is that if she doesn't need IV antibiotics or intubation, then we just need to go home because I can do everything else here without exposing her to all the germs wafting around in the hospital.

When I cut the hospital bands off her arm later that night as I tucked her into her bed, I thought "there is my gift!"

Because she was not well, and since Genevieve's children had gone ahead of her to the Philippines, Genevieve stayed with Abbie as we went to dinners on Christmas Eve and Christmas. These were difficult and painful decisions, but were best for her and our family. She had a blast on Christmas morning, and was content to hang out with Genevieve otherwise.

Our family is richly blessed with good friends here, so we have some very warm memories of Christmas Eve dinner on the beach, and singing Christmas carols on Christmas night.

In Hawaii, New Year's Eve is an all-out bash, with more fireworks than Fourth of July. I was nervous to take Abbie to the party we always attend, as the air quality gets pretty poor as the the evening wears on. I almost forgot that for Abbie even more important than clean air is being included. She was tired of being left home, and was so terrifically content that she breathed better than she had in a month.

We bid aloha to 2010 deafened by strings of Chinese firecrackers, and welcomed 2011 looking up through the smoke to silent stars. This is going to be a year of good fun, great adventures, and God willing, miracles for many who are waiting.

May God bless you!

Abbie's Dolphin Day

2010-12-13T13:38:00.000-08:00

Abbie getting close enough to feel the dolphin's heartbeat.

Paying attention to the thump-thump-thump

The lifejacket is smooshing her face, but you can still see her grin. She loved it! Glad I put her in a wetsuit, though, because the water was a chilly.

There were several families there with their children who are also clients of the rehab department at Kapiolani.

We saw this little guy on the way out.

Abbie also got to feed the dolphins lots of slimy fish, and received many gentle dolphin kisses in return. Quite a keepsake day!

Lots going on here which has prevented this posting until now. We had a nice, quiet Thanksgiving at home. Since early December Abbie has had something going on in her chest, which has made sleep fleeting for her and I. We are glad to have Chase home from college -- he arrived last Saturday!

More to follow (soon I hope!)

God Bless!

Love is Stronger than Death; Laughter Wipes Away Tears

2010-11-22T14:57:00.000-08:00

It's taken me several days to catch up on sleep and digest the events of last weekend's Near-Drowning Mom's Retreat (the first annual, I might add). It was like the longest slumber party I have ever attended. In the weeks leading up to it, I was concerned that it might be really heavy and sad, with many stored tears let loose.

Ha!

Or, more appropriately, hahahahahahaha!!

I don't recall ever having laughed so much in my life. Perhaps it was because for one smidgeon of time each of us were "normal", and our lives were just like everyone else's. Perhaps it was because we could make jokes that we would never say nor tolerate in the outside world.

Here's one example: we'd just come back after a long day in Seattle and were determined to go in the hot tub even though it was 11:30pm. We dashed through the cold air, and hopped in...only to find that for some reason we were now submerged in a Lukewarm Tub. The temperature was only 90 degrees, and we were stuck. It was way too cold outside to make a run for it without being heated up by the tub, but it was way too tepid in the tub to be enjoyable.

We decided we would push, poke, tickle, talk to and yell at the tub controls until it began heating the water (which eventually worked.). Two hours later it was at 99 degrees and we were feeling pretty toasty, comparatively. As the clock neared 2am, our eyes were drooping. One mom said, "Now, I don't think it would be too funny if the headline tomorrow read '5 moms drown in hot tub at near-drowning retreat.'"

A line like that would have made us cry or yell in the real world, but here in our bubble of understanding and shared struggles (and sleep deprivation) it was just plain funny.

Most of all, though, I think we laughed so much because during the time each of us has been on this road (varying from 2-8 years) we have had to choose over and over and over again to laugh instead of cry. We have highly refined senses of humor, and our instant sisterhood allowed us to poke fun at each other's expense from minute one.

Annie is the mom of Isabelle, who drowned 13 days after Abbie did. We have been in touch since that first incomprehensible summer when both our girls were in rehab, and I have been longing to meet her. She was the last to arrive, at 1:30am. I, on the other hand, flew over night the night before and had been at the house since 9am...waiting, and welcoming, and waiting some more. Finally, she walked in, gave me a hug, said "hi" and then...."You are SO SHORT!! I just really thought you'd be taller."

Yep, after 6 years of shared trials THAT was the first thing out of her mouth....and thus it began. Sharp tongues and sharper wits kept the weekend lively.

The other thing that was overwhelming, in hearing everyone's stories, was not the loss or the heartache, but the goodness of people. It is staggering, truly, the kindnesses that have been showered on our children and our families. Teresa, Samuel's mom told of being discharged with no nursing care -- an unfathomable load to carry. The nurses at the ER where Samuel first went heard about this and organized a volunteer schedule of shifts that covered two months. The meals, the prayers, the financial help -- THAT was what we talked about in awe. Each of us is so, so grateful.

While I had looked forward to meeting these women, I had not begun to conceive how powerful it would be. The safety of shared experience, the freedom from judgement or the need to explain, the concentration of hope and faith, and the permission to be a little (lot) silly.

It may sound overly sentimental, but I say it in the fiercest voice I can raise - these are my sisters bonded in tears, and grief and sorrow, but experienced in joy and laughter and hope. What a heavenly gift!

OR Express Lane

2010-11-11T19:28:00.000-08:00

For Abbie, this morning brought a "Wham-Bam" of procedures in the operating room. At 6:30am she had tubes placed in her ears to drain fluid, allow her to hear better, and ensure she tolerates the hyperbaric chamber without pain. Since she was going to be under anesthesia for this, I thought it would be an opportune time to repeat the Botox injections in her arms we had done in April.

Her orthopedic surgeon was so gracious to sandwich her into his jammed schedule, so he saw Abbie at 6:45. He told me later that he had some Botox left over after injecting her biceps and supinators (forearm muscles), so he injected her stubborn little thumbs. That unexpected bonus made me smile.

I am so pleased we were able to get the Botox on board now, so that it will be in full effect by the time the seating specialist from San Diego gets here to assess her for the power chair next month.

After these two procedures, she was then handed off to an audiologist, who tested her auditory nerves while she was still under sedation. She feels that Abbie can hear well, despite having some neuropathy. The level of the neuropathy has not changed since her first test 6 years ago - so that was good news.

Ray and I met Abbie in recovery around 8:45am. I was excited that we would be getting home so early in the day, as I still had some preparation to do for my flight to Washington tonight. Just one glitch....Abbie needed to wake up before we could go.

We knew she was with us because she would furrow her brows when a new recovery arrival would awaken and begin crying. But, she would not crack those peepers open. Finally, she was moved out of recovery, because she no longer needed the monitors, and we went back to the "SurgiCenter" where our morning had started.

Zzzzzzzzzzzzzz

She just kept snoozing. By now, Ray had had to leave for a meeting, so Kyle had arrived to help me take Abbie home.

ZZZzzzzzzzzzz

Nothing was working - not uncovering her and letting the cool air hit her skin. Not changing her panties. Nothing.

Finally, I asked Kyle to just go to her bedside and start talking to her while gently shaking her chest. A glimmer of hope, as one eye cracked open! I prodded him to keep going, until she was awake enough for us to convince the nurse to take her IV out. She was definitely not completely with it, but we made a break for it while we could.

Once we got home, she did very well. As she really brightened up, we could easily see how much better she was hearing. Every little sound, and the softest whispers got responses from her. What a blessing! We will be looking forward to see how her schooling will go now, and are grateful that her ears won't be causing her any more pain.

Could I ask you to pray for her this weekend while I am away? I'm a little surprised at myself, that I am flying away the day she had procedures done - but, I trust her and I trust Ray. I know all will be well if they are covered by prayer.

Please pray also for the moms who will be converging on Suncadia tomorrow, and the families they will be leaving behind in North Carolina, Texas, Georgia, Utah, Arizona, California, Washington and here in Hawaii. I can't quite envision what it will be like to all be in the same room together, but it is going to be gooooood.

My prayers go out today to the families of our fallen veterans, and those caring for injured and recovering veterans, as well as all vets. May the Lord bless and keep you; Make His face to shine upon you; May He always be with you; and bring you peace. Your country is so grateful.

A Bigger Balloon

2010-10-25T21:33:00.000-07:00

It's taken me a few days to catch my breath enough to write this update. I don't know what it says about me, or where we're at in this journey, that I question therapists expecting to have my balloon popped. I always have a twinge of fear that my expectations of Abbie may be oversized, and my observations of her abilities are skewed by love and hope.

Last Wednesday we were able to visit her Augmentative Communication speech therapist for the first time in a very long while. Lisa is the one who helps us with Abbie's switches -- she's the one who has given Abbie a voice.

I brought her up to speed on what Abbie is able to do now -- most importantly, "two-step scanning", using two switches to make choices. In my mind, this brought her very close to being ready for a dynamic communication device -- a computer whose display moves from one screen to the next when she makes choices. Not only did the balloon not go "pop", but it became hyper-inflated!

Lisa told me that another family we know, whose daughter uses a dynamic device, flew up to San Diego a while back to have a wheelchair seat custom-molded for their daughter. The chair is now ready, so instead of flying the whole family back to California, they are flying the wheelchair guy to Hawaii. He would like to train the staff while he is here, so is looking for a couple of other kids to work with.

Oooo-oooh --- pick me, pick me!!

It looks like we will be able to see him, but get this --- the chair he has put together for Shari is a power chair, and she will be able to use the same device to control her chair and her communication device! Oh. My. Goodness. This thought had never occurred to me. I had concerns about how she would be able to move from one joystick for driving to another for communicating, but my mind had never wandered to such an elegant solution.

So, the possibility is there, and her speech therapist thinks that from a control-device access point of view, Abbie is ready (for the communication device AND the chair)...but what would her other therapists say?

The next day we went to OT, and as Providence would have it, Eydie had planned to let Abbie practice in the power chair again.

We got her all set up, and she started backing up again. She hit the desk behind her, and then apparently decided that actually going somewhere might be more fun than just crashing into things. She started moving forward...toward the door. We all looked at each other, and said aloud "Should we open the door?"

Duh. Of course we opened the door.

We helped with the tight turns, and then.....there she went. Rolling down the hall, driving herself.

I saw other kids in the hallway stop what they were doing to watch Abbie roll by. My soul rejoiced as they saw HER, and as they processed that she was doing this herself, so she had to be smart.

When we made it back to the room, Eydie looked at me and said, "I am calling today to put a stop to the manual wheelchair order!" We have been waiting for this chair for 5 months now, and I have been getting a little more than aggravated at the delay. Ha ha ha -- always for a reason. A wonderful, beautiful reason.

There is much to consider as we pursue this new possibility. Would you pray for wisdom for us, and for the perfect, perfect chair and communication system for us. Each chair has to last 5 years, so we must do our best to look into the future and determine what will best meet Abbie's needs at age 14. (If she still needs a wheelchair by then.)

If we can make this power chair/communication device combo happen for her, it will truly change Abbie's life. I can't believe she's here. She works so hard every day, yet we know that it is God's grace that has lifted us to this broad place - and we rejoice with (off-key) singing!

New Information, New Accomplishments

2010-10-13T20:38:00.000-07:00

As usual, when I've let time slip by between updates, I need to start in the present and then see what I can drag out of my shadowy memory. So, let's start with today...

We had an appointment with an audiologist, because at a check-up with Abbie's ENT last week, lots of fluid was found in her ears. Dr. T. wanted to do the audiological testing before determining whether to place PE tubes in Abbie's ears.

When the audiologist called yesterday to confirm the appointment and talk specifics about the testing, she mentioned "Remember when we last did the ABR testing (2004 or 05), it was determined that Abbie has Auditory Neuropathic Spectrum Disorder (ANSD)?'

Ummmm....no, I didn't recall anything being wrong with her auditory nerve, and for years have found comfort in at least one of her senses being intact. Ugh. This unexpected news pushed me further into a pit I'd been slowly sinking into. The rest of the day was spent researching this relatively new diagnosis, which was formalized in 2008, I believe, at a meeting in Como, Italy. Thoughts of that beautiful place were momentarily distracting, but my heart was still pierced.

My research didn't show much, as like many "spectrum disorders", information is broad and not particularly useful. This morning, however the audiologist said she needed to perform certain tests to ensure the ANSP was not progressing.

What?? This whatever-it-is can be progressive leading to profound deafness???

First came the tympanogram which showed that her right ear is completely full of fluid, while her left is is also affected, but not as completely.

She then tested the left ear, and was able to get the results we were hoping for, despite the fluid. Abbie can hear -- as we assumed she could. But, all this fluid does explain why sometimes it seems as if she is distracted during school, working on the computer, or interacting with other people. We all sound like Charlie Brown's teacher to her!

I scheduled the PE tube surgery, along with audiological testing that is done under sedation, for the early morning of November 11. I fly out that night for a special retreat in Washington State -- only for moms of near-drowning survivors who are coming from across the country. (Woo-hoo!!!) I am confident that all will go smoothly, and that, in fact, Abbie will feel a lot better once it is over and all that pressure is relieved.

That whole ear situation leads me to an example of Abbie's improving communication skills. The day after we visited her ENT, she slept a lot in the morning. Around 3:30pm Genevieve came into the kitchen and said, "I need you right now." This is rare, and I was immediately concerned.

Abbie was laying on the massage table bawling her eyes out. She never does this unless she is injured -- as in broken femurs or torn ligaments. I knew that she had not done anything that day that would have exposed her to the risk of injury, so I was stumped.

I said to Genevieve, "Tell me exactly what happened."

As Abbie continued to wail, Genevieve told me that she had carried Abbie from her bed to the massage table with no complaints. Then, she picked her up and took one step toward the hyperbaric chamber, at which point the crying commenced.

Aha! Given what Dr. T. had seen in her ears the day prior, I had an idea what was causing the fit.

"Abbie, does diving hurt your ears?"

More crying, but blinking yes in response as well. Then, more crying.

"OK, OK...we are not going to dive. You are not going to dive today. I will rock you instead. Let's go to the rocking chair instead." I had to keep reassuring her until she could hear me through her distress. Once she understood, the crying ceased immediately.

I smiled as I rocked her. Kissing her tear-stained cheeks I said, "Abbie you knew what was going to happen -- you knew you were about to go diving, and you knew it would hurt and you found a way to tell us 'NO!' That is called communication. I am so proud of you!"

Out came her dimple. I enjoyed that while also relishing the realization that she was able to anticipate and communicate. No more diving for now. Lots more rocking.

The second big thing is how she is doing with her communication switch. As I mentioned before, she is now using a joystick with her right hand. Because she likes to roll her hand and arm to the outside, we have been using flexible straps to help her keep her hand on the switch. Her school OT wanted to write an IEP goal that Abbie would hold her hand and arm in a neutral position for five minutes. I replied that we needed to start measuring in seconds, not minutes.

Silly Mom (That is my new name, for as often as I earn the moniker)

When the school therapists were here, I placed the joystick in her hand, and went to look for the straps. When I came back with them, she was holding on and using the switch just fine by herself. So, I set the straps down and watched.

Fifteen minutes. All by herself.

And then - she got tired and let her arm roll to the outside, which pulled her hand off the switch. We were all so excited about how long she had held that position, and were talking about what to do next that we didn't see her roll her arm back over and place her hand back on the joystick. All by herself. I cannot tell you how momentous that little movement was.

She continues to enjoy working on the computer, especially with a program called "Choose and Tell", in which she gets to choose the hero of the story, the mode of transportation, the destination, and then the paths to follow and doors to open. She is exceptionally picky about the doors she chooses, because one hides a treasure and one hides a monster. She remembers which one is which after she's built a certain story once or twice, so always wants to make sure she finds the treasure.

I watch her, and realize that I have already found mine.

Open Doors and Independence

2010-09-27T01:04:00.000-07:00

(note: I did not begin this update with thoughts of writing a tome, but just went where the Spirit led. I pray you will be blessed.)

"When it rains, it pours" is such a cliche, but only because it's the truth. Things can never seem to happen in manageable isolation, but insist on arriving in chaotic twins or utterly crazy triplets. Usually, it is a cause for aggravation or even despair.

Not at our house. At least, not lately!

Perhaps Abbie's prayers for Dobi (see last update) added rivulets to her own growing stream of recovery. Maybe the paths of her faith and God's will are at an important intersection. It could just be the turning of a small facet of the divine plan that we will never comprehend. Whatever the underpinnings, all that matters is that "it" is GOOD!

A couple of weeks ago we met with her orthopedic surgeon and therapy team. Together we assessed her current state - below the waist she is awesome and we are all pleased with her knee-bending, foot position, and hip flexion. Her arms and hands did not get the same gold star. Dr. B said that he thought the hand surgery he performed in April would be a "permanent solution" to her wanting to hold her thumb on her palm and keep her hand fisted. Her hands are so much better than they were, but her thumbs really (really, really) want to go back to their cozy palm-caves and we are continually fighting against that with splinting, massage and exercises. Her arms also want to roll back out again, making it tough to stay in a neutral arm position, and almost impossible to get to full pronation (palm down). Not great for communication. We talked about future arm fusions and other not great things. We looked at her spine and talked about monitoring the developing curve, which may become much more pronounced through adolescence. We discussed how many adolescents require rods in their backs to prevent curvatures that compromise their abilities to breathe or be seated in wheelchairs.

Finally, at one point I looked at Dr. B. and said, "What you are telling me in not so many words is that this is all going to get a lot more difficult."

"Yes - as she grows those tight muscles are going to get bigger and stronger. Everything is more difficult then."

I was grateful for his challenging, yet empathetic honesty. I could deal with it because in the back of my mind I was thinking, "We're just not going to let it get to that point."

I've thought that before, and been wrong -- about things as simple as a G-tube and as complex as her hip surgery.

This time is different, however, because we have a new tool in our box that seems to be making a huge difference already. First, let me tell you what we've seen, and then I 'll tell you what it is.

One result of Abbie's brain injury is that she is slack-jawed and her mouth hangs open nearly all the time. Over the years this has changed the architecture of her mouth and jaw. In August I had a dentist I really respect examine Abbie. Since we have no images of her mouth, he said that just by manual examination he could not tell if her TMJ joint was fused, or had even formed properly. He was not sure how much range of motion we were ever going to be able to get with her lower jaw, but was not overly discouraging because the truth was there was no clear way to tell.

The next day Abbie received her first treatment with this new tool. Within twenty minutes her jaw was swinging like a gate on shiny new hinges. I was stunned. The only barrier to full mouth closure was her first molars.

During this session, her nurse Alicia and I both watched in amazement as Abbie's face changed right before our eyes. Constricted for all these years, her palate is very narrowed, and thus her mid-face is as well. We saw it broaden, with her cheekbones becoming more prominent and her eye sockets becoming distinguished from her face. It was stunning.

Having seen the visual evidence of the power of this new tool, I ordered one and (im)patiently waited.

Hmmmm....I just realized that to really tell the rest of this story I need to tell you what the tool is now.

The "BioTransducer" is an attachment to the Tennant Biomodulator, a device we have used for years. While the Biomodulator works through the electrical wiring systems of the body (the sheath around every nerve, and the fascia), the BioTransducer works with the magnetic fields created within the body whenever electrons move.

This difference has opened up incredible new doorways for us. I believe the Biomodulator is a critical reason why Abbie has recovered her cognition. But, we've never had a way to treat her brain directly. Until now.

As I passed the BioTransducer over her head I would feel magnetic tugs at areas that needed treatment. I just treated where it "stuck". I think I spent an hour or so doing that, and then Abbie fell deeply asleep for the night. Over the next three days I noticed two things about Abbie as I continued to treat her brain and other parts of her body.

She was sleeping a TON. One morning she slept from 9:30 until 1:30. A couple of days later she slept from 9:30 until 12:30.   She was breathing wonderfully, had a normal temperature, and her coloring was beautiful. So, I just let her rest and assumed she was doing some heavy duty "inside" work.

When she was awake she seemed to be unloading a lot of emotional trauma. At random times she would become very upset: crying, screaming out, shaking. One night I slept on the recliner right by her bed so that I could be there immediately to comfort her. Again, this seemed to be part of a process she was working through, so we just stayed calm and tried to reassure her that she was safe and we were right there.

This went on for three days.

At the beginning of this sleep/scared stage we went to PT. Abbie has outgrown the foot splints that we use when she stands, so she has not been standing in a while. Dr. B. asked why we weren't letting her stand barefooted.   Uhhhhh - no good reason, so up she went on Monday.

Because she hadn't stood in so long, her lower legs began to get a little blue after 5 minutes, as her circulatory system isn't used to pumping uphill. I was using the BioTransducer on her left leg because the IT band is a bit constricted, which gives her valgus in the left knee (her knee bends inward). As I treated that area, her lower left leg turned pink again. Her PT pointed this out to me, so we thought we'd experiment on the other leg. After a bit of BioTransducer treatment it pinked up again, too. So, I kept treating, and Abbie kept standing. She was able to do twenty minutes since we were able to keep her legs pink.

By Wednesday evening it seemed that most of the emotional issues had been worked through, for now. Thursday brought two therapy appointments back-to-back. Of course, I packed our new toy along.

First we went to Vital Stim, the therapy to strengthen Abbie's swallow. She had cried throughout the previous week's session, as she detests the electrodes stuck to her throat. This week I focused on treating her TMJ joint as the therapist worked on her swallowing. I only had a sideways view of the action, but did catch a glimpse of what caused the therapist to exclaim, "Oh my God!!"

Abbie had raised her lower jaw up to meet her upper jaw during a swallow. That sounds so pedestrian, but we have been working on, and praying for that for six years. And, then she did it again. And again. Coordinating her jaw movements with her swallow is like learning a new dance for her, so she soon fatigued and it got harder for her. But, we all saw it and rejoiced. Not only is her jaw unlocked, but she is learning how to USE it again.

We floated out to the hallway on a wave of celebration, and drifted into the OT treatment room.

I explained to Abbie's OT that given Dr. B's assessement of Abbie's hands we had changed the kind of switch she uses to communicate since the old one encouraged the type of movement we were trying to avoid. The BioTransducer treatments had reduced Abbie's muscle tone enough that she was able to easily keep her right hand and arm in a neutral position and use a joystick switch. She had showed this to the school therapist the previous Friday, and was now happy to show Auntie Eydie.

She did so well with the switch that Eydie said, "Let's get her into the power chair, since the controller is also a joystick." Abbie was all for that idea!

We padded the controller a bit to make it big enough for her to get a good grip on it, and then....

There she went, all by herself.   Eydie, Alicia and I just stood back, and for the first time in over six years I watched Abbie go somewhere all by herself. There are not words to describe the sensation of that sight, or the emotions I felt.

Of course, she did it in true Abbie-style. Backwards - because that is more fun. When we would warn her that she was about to bump into something, she would just speed up until she crashed into the desk, or wall, or garbage can. Still a rascal!!

Of course, we continue daily BioTransducer treatments, and at times it feels like a dream. Every parent in our situation prays, hopes, begs and wishes for something that will truly help, something that really will change things. I can't believe that it's now in our hands.

I do not know where Abbie's road will go from here, and when the curves and hills will come. All I know is that we are truly abundantly blessed.

Tonight she and I read Psalms 56 and 116, which seemed penned just for her. I know, I know, I know that she truly will "praise" and "tell" and "proclaim" before the Lord's people one day. And, she may just ascend the stage backwards....just for fun!

*** One other little note, amidst all this praise. Please pray for our niece Crystal, who lived with us when Abbie was hurt and helped us so much in caring for Abbie afterwards. She and her husband, Dustin, are at the hospital right now as she labors with their first child. We hope and pray that little Katelyn will arrive safely - after midnight - so that she can celebrate her Birth Day along with Kyle, who will be 18 tomorrow. ***

Powerful Princess

2010-09-15T20:37:00.000-07:00

Abbie has been busy getting used to new therapists from school, who come to work with her at home. She has also kept up all her physical work. It is difficult, after a lapse in updates, to catch up. So, the best (I admit...I mean "easiest") thing to do is to just jump right in at where we are.

Last Sunday began a saga that made me realize how blessed we are. Just before Genevieve left, she asked, "What is that fever you get from mosquitoes?" Malaria was the first thing that came to my mind, and was my answer. In the middle of the night the word "Dengue" came to me. Yes, indeed, it was Dengue fever that her two little great-nieces were afflicted with in the Phillippines.

Monday brought dire news, that the older sister (6yo) was failing, and becoming unresponsive. It was especially stressful for Genevieve and her family because in the Phillippines, medical treatment is not undertaken unless it is paid for right then. They were having to come up with money, during the crisis, to get the care these precious girls needed.

The family was being heavily pressured to disconnect life support, as Dobi's organs failed and she no longer responded to anyone. Treatment was begun too far into the course of the illness to help her. The family's only recourse was to beg for the hospital to leave it on long enough for the mother to get there to hold her daughter as she passed away. Sickening memories for us, of that situation, but all I had to worry about then was Abbie - -not how we were going to pay the ICU costs that day.

As the news kept getting worse I turned to Abbie and said firmly, "You need to start praying for Dobi...right now. Pray for Jesus to heal her. You keep praying." Abbie's little body jumped in her bed and her eyes flashed her affirmation. I turned to Genevieve and said, "Abbie is on the job!"

A couple hours later, Genevieve's phone rang. Dobi had urinated a tiny bit. We laughed with joy - -it wasn't over yet! But, the family still had to fight to be allowed to support her. The disconnection was scheduled for Tuesday.

Mid-afternoon on Tuesday, while I was in the kitchen I heard Genevieve cry, "Oh my God!" I hesitated just a moment before I ran in there, intimidated by the grief about to confront me. When I saw her face, however, I became dizzy. Not tears. Joy....joy, joy , joy.

Dobi was awake! And talking. And asking for a Dora cake for her birthday. I danced over to Abbie and said, "Look how powerful your prayers are. LOOK what you CAN do!!" She grinned. I reminded her that the job wasn't quite done, and that we needed to pray Dobi all the way home, but we did relish the celebration.

We are humbled yet again. How loving and compassionate is our God. How he houses his most powerful warriors in fragile clay. How profoundly he uses those the world sees as unuseful.

Abbie was most certainly not the only one praying for Dobi. But, He allowed Abbie the privilege of being part of someone else's miracle, to feel capable and strong, and, I suspect, to feel particularly equipped and called for just such a mission.

We are so grateful!

A Blessed Birthday

2010-08-23T23:35:00.000-07:00

As every mom does, I am sure, I watched the minutes this evening counting down until the moment Abigail Faith entered our lives. I recalled wanting to toss my natural birthing plan out the window, and thinking the nurse was on board. Only later did I find out that my dear, supportive husband was standing behind me shaking his head no. Poor woman -- a desperate patient one one hand, and her very firm boss on the other.

I seriously thought the IV team, and my epidural were on the way during the 15 minutes it took to go from 6 to 10cm dilation. Nope. I also assumed the doctor would be in the room when the baby arrived. Wrong again. Nothing went as expected that day, including welcoming an Abigail instead of a Jack Logan. The depth of that surprise will never wear off, thankfully.

As 6:26 pm neared I was busy in the kitchen, preparing dinner for the boys. It had been a beautiful day, capped by the full rainbow smiling at Chase and I as we left the gym in the afternoon. I think I heard the rain before I saw it, because the sky really hadn't changed. The pinks of approaching sunset, puffy clouds in the distance and the golden haze in my yard contrasted completely with the deluge that made my jaw drop. The shock of the dissonance made me stop in my tracks, and brought the thought, "The blessings of God are heavy upon us." It only lasted five minutes -- just long enough for me to get the Lord's birthday message for Abbie.

As I finished dinner, and reflected on the year gone by, it struck me that on Abbie's eighth birthday, we had no idea how smart she is. We were a month away from beginning to do math with her, and had just figured out that she could spell. I wonder what she is going to surprise us with this year -- I can hardly wait! I pray that this would be the year that her body would be unbound.

This has already been a fairly lengthy update, but I want to share with you the message we got at church yesterday. It was so exquisitely-timed that I laughed aloud when the subject, and the punchline, were revealed. I think it was God's birthday letter to Abbie (and her family.)

We had a visiting pastor yesterday, who said he would be speaking on faith, using the text in Genesis that describes when Abraham was called to sacrifice his much-prayed for son. His decades of praying for Isaac made my years of pleading for Abbie pale in comparison.

The crux of the message was that there were two sides to that mountain that Abraham and his unaware son were climbing, and they could only see their side. They could not see God coming up the other side to meet them with the ram, to be sacrificed in Isaac's place. Abraham did not delay his obedience in order to wait for God's alternate provision. And, if he had faltered, if he had stopped halfway up, or even just a few steps short, he never would have known God's provision for him. How different would his life and faith have been?

The pastor defined faith as the intersection of our obedience and God's provision. The challenge, he explained, is that we often want to see the provision before we obey. But, "Do not quit. Do not quit. Don't give up. Do not quit!!!" he exhorted us.

Oh no -- we will not quit. We will not stop. We are just trying to keep up with an amazing girl who is charging up that mountain, confident in the provision that we only glimpse dimly. May the Lord bless her deeply this year!

Hard Work Rewarded

2010-08-11T21:16:00.000-07:00

We are just getting our feet back on the ground after a wonderful 2-week vacation in Washington State. Abbie thrived on long walks through the woods, listening for birds and looking for deer. She also spent quite a bit of time on a massage table positioned next to an enormous window overlooking a grove of pine trees. If a body can say "ahhhhhhh", that's what she looked like much of the vacation. I think she relished not having any appointments or therapies as much as we did.

The day after we got home I had a meeting at the elementary school to revalidate Abbie's eligibility for special education and to discuss the reports written by school staff who had done observations in June and July. Usually with Abbie, the eligibility meeting is simply a check-the-block exercise because it is obvious to everyone that she meets the criteria for provision of special ed. This year, however, threw me a curveball blessing.

There are many categories of eligbility for special ed (i.e. deafness, vision impairment, autism, etc.) Abbie has always fallen into the category titled "multiple disabilites". This seemed entirely appropriate to me, as she has challenges on many fronts. This year, however, the special services coordinator, Ms. B., brought folders for all of us to review, containing the criteria worksheets for each category. For a student to meet the criteria, each question had to be answered "yes." I bit my lip when I read the first criteria under "multiple disabilities". It referred to "intellectual functioning three or more standard deviations below normal". The rest of the questions also included reference to significantly impaired intellectual function. I certainly didn't think this fit Abbie, but I didn't know what the staff would think, given their rather limited exposure to her.

As we finished reading through that worksheet, I didn't even have time to look up before Ms. B. stole my words, saying "I'm not sure Abbie really falls into this category anymore." WOW! They see her!!! They believe me, and her! As a team we determined that Abbie is eligible for special ed under a category titled "Other Health Challenges". In other words, I have a PHYSICALLY disabled daughter, who needs special ed services to work around these challenges to maximize her tremendous intellectual potential. That little girl has worked so, so hard, for so many years....my heart rejoices over her accomplishments and progress, and the fact that more and more she is able to make her own point, which is "I am able!"

She will be homeschooled this year, with collaboration of school therapy staff and perhaps a tutor. They are a great group of folks, so I am looking forward to seeing what we can do together to help Abbie.

We are blessed!

What Abbie's Been Up To

2010-07-11T17:11:00.000-07:00

It's been a couple months since a real Abbie update - I apologize for that. There is lots to share, as it has been an exciting summer so far.

Of primary interest, of course, is how she is doing with her hands, after the big surgery in late April. They look beautiful! Her scars are healing really well, and not causing much discomfort. Her thumbs would still prefer to move back toward her palms, so we are managing that with splints that she wears regularly. The outcome we had hoped for - better use of her hands, is coming to fruition as well. She is able to use a smaller switch in her hand which she can click using just the movement of her thumb and fingers. Previously, she would drop her hand backwards, into an undesirable position, to activate her switch. There was quite a cheer the first time she used the little switch!

Now that she can use her hand we determined it was time to really get back to work on communication and use of the computer for schoolwork. For now, the best strategy for Abbie is called "2-step scanning". "Two steps" means two switches for her - one in her hand and one above her foot. This method requires that she scans through available choices with one switch and then selects her choice with another switch.

We thought it would take a couple of weeks for her to learn how to do this, as it requires her to use her vision, reasoning, decision-making and motor skills simultaneously. I was able to borrow quite a bit of software to try out, and decided to start Abbie on one program geared simply toward switch training. She would have to use her "mover" switch (foot) three times to move a picture toward the target. Once it was at the target she would have to use her "selector" switch (hand) to make play the animation represented by the picture.

Two weeks....twenty minutes. Same thing in Abbie's world. She understood the concept right away, and was able to use the system smoothly in about 20 minutes. I skipped through the house gleefully - which yes, did elicit looks of "Does Mom need a nap or an asylum?" I explained to my curious crew that this skill, step-scanning, now opens the door for Abbie to do school on the computer. To write her own sentences, essays, poetry; to take tests to demonstrate her knowledge unequivocally, to paint and draw and color....to have fun!

This is a BIG step!

After considering what Abbie and our family went through this year during her attendance at school, we decided that we will be homeschooling her this year. We may have the support of some school district specialists, such as vision, speech, PT and OT, but that is up to the school at this point. It would be wonderful to include them in our plan, but if it is not feasible, we will move forward eagerly anyway.

Since Abbie will be homeschooled, I have the flexibility to teach her when she is at her brightest, but also to ensure that she has FUN. In this vein, I took her for a Music Therapy evaluation last week. It is not like a music class, which is just exposure, but rather is true therapy, with individualized goals and approaches. She absolutely loved making music by accompanying the piano with a tamborine and then a chime. Our primary goal, in addition to enjoyment, is to elicit more and more vocalization from Abbie. Many kids who experience ongoing music therapy use their voice more often.

The reason this is a goal is because Abbie is doing it already. She is talking, talking, talking...in her own way. Often when someone says "hello", she will quickly vocalize in response. I reinforce this by telling her that it's good manners to answer when someone says "hello", and commend her for being a polite young lady.

The other day at PT, her therapist was asking me many questions about what we do with Abbie at home, when she finally gave up and just started asking Abbie directly because she always answered before I did anyway.

On Wednesday the school vision specialist came to see us. We've never had a functional vision test for Abbie, so I was interested to see what this would be all about. Amy set up a black velcro-board five feet away from Abbie. We gave Abbie three choice to choose from, and then Amy showed her shapes and asked Abbie to identify them. She did really well. Then we used her foot to say "yes" and we would scan through shapes. Even we tried to trick her and show her a shape that was not within her choice pool, she did not fall for it. I was so proud of her. Amy is going to get something called a "CCTV" which can magnify any book or object placed on its tray. Our goal is to allow Abbie to read her own books.

We are at therapy 3 days a week, between PT, OT, Speech and Vital Stim (to strengthen her swallowing), so between that and shuttling around her brothers it is quite a busy summer. But, she continues to blossom and we are so grateful!

I hope that each of you is getting some extra time with your family this summer!

Checking Back In

2010-06-19T14:11:00.000-07:00

I am so sorry for the extended lapse in updates. Most importantly, Abbie is doing great!

I have a great excuse for being incommunicado:

The twins and I in front of of the Trevi Fountain in Rome.

I accompanied their Latin class on a tour of Italy in early June. Wow -- or, rather, "Mamma Mia!!" You can imagine the challenges that arise herding over 40 7th and 8th graders through things like customs and foreign public transportation, but they did very well. I fell in love with Italy, and hope to go back one day with Ray.

Abbie was always in my heart, wherever each day happened to find us. One day early in the tour we traveled to Siena, within whose walls development stopped in the 1500s. Visiting the cathedral there was one of the highlights of the entire trip for me. It is stunning, and humbling to realize it was constructed in the 1300s.

As our time in the cathedral was coming to a close I caught a glimpse of another class mom and her daughter kneeling in prayer. I waited until they were done, and then asked whether I, as a non-Catholic, could also light a candle and pray. When they said "yes", I almost started to cry. I found my way to the rows of candles and chose one for Abbie. I could barely see to light it, so once I accomplished that I quickly went to kneeling and closed my eyes. I wept in a place that I know many mothers long ago also wept and begged, as the bubonic plague ravaged Siena.

As peace finally descended, I opened my eyes to find that I was kneeling before an enormous painting depicting the Bible story of the woman who needed healing reaching out to grasp the hem of Christ's robe. I felt again the warm laughter of God, reminding me that He knows....He knows.

That afternoon, in Florence, another mom, Caroline and I hiked to the top of the dome of the cathedral. Stunned by the view, I was feeling very far away from home. Caroline and I chatted briefly, and for some reason we said the words "Outrigger Club". Just then, from behind us, a couple asked "Are you from Hawaii??"

The woman looked at me and said, "You look so familiar! Do you have soccer players?"

"No," I answered. "I have a football player, a wrestler, and a water polo player...and general rascals, but no soccer stars.'

She looked stumped, so for some reason I said, "Hawaii Kai Church?"

Her face lit up and she said, "Yes! You are Abbie's mom!!"

I caught my breath. Twelve time zones away from my girl, I was "Abbie's mom". What a privilege.

We chatted for a while, and then as we walked away, Caroline said, "You've gotta tell Abbie that she has a fan club all over the world."

Towards the end of our journey, we visited a church in Rome called "St. Peter in Chains." Compared the the elaborate cathedrals and enormous structures found elsewhere, this church is relatively simple. Our tour guides explained the name of the church before we went in. Apparently, sometime during the 1300s there were two sets of chains inside the church. One night, somehow the chains became linked. No one could explain or understand how this had happened.

The set of chains is on display at the front of the sanctuary. The boys and I approached, paid 1 Euro for a candle to continue our "Candles Across Italy" tradition begun in Siena, and then turned toward the chains. I heard so insistently, "I am the Lord. I knit together what man cannot understand. I am the Lord. I knit together what man cannot." I froze. I pictured Abbie's brain, and prayed with thanksgiving to the Lord who knits together what I will never comprehend. This moment was so overwhelming that I can barely type about it now.

The longest leg of our return flight was from Frankfurt to San Francisco. Our group was spread out throughout the plane, and I was almost at the back. As I approached, and spotted my row-mates, the thought, "no, no, no" screamed through my brain. My seat was on the aisle. Next to that sat a young boy. Next to him was his father, holding a toddler. In front of him was the mother, sitting next to a young girl. This was going to be a nightmare!!

Or not.

They were the sweetest family from Finland, with the most well-behaved children. Lauri, the five-year-old boy next to me colored, ate a few sweets, and spoke rarely and quietly. Elin, the 18-month-old girl slept for 4 hours and then became my buddy. After she would press the buttons on the armrest we would both say "Yay!". A very non-Finnish thing to say, laughed her father, Matti.

As we talked about the blessings of children, Abbie came up. When Matti found out how Abbie had been injured, he became very interested, remarking that his father is a neurologist/neuroscientist in Finland. He has mostly studied Soviet/Eastern European research, which I think is terrific. For all the evils of Communism, those Soviet scientists were able to get funding for the wackiest studies - which often turned out not to be wacky at all. He asked permission to share Abbie's story with his father, just in case he would have any insight. He also asked me to tell Abbie that a family in Finland would be thinking of and rooting for her. Yes, she really does have a fan club all over the world. Abbie grinned when she heard this.

Our girl looked fantastic when I arrived home. I owe so much to Ray, Genevieve, Alicia, Rae, and Madeleine for making it possible for me to go so far away for so long. I think Abbie relished extra time with her Daddy, and I can tell that it meant a lot to him, too.

Now, it is back to work, and back to rehab from the surgery. But, we did bring some Italia home with us. Abbie defines the phrase on the T-shirt I brought her from Venice. "Ciao Bella" has never been more appropriate! We also went to the library on Thursday and checked out a bunch of books from Italy so she could learn about where we went. She soaked up a selection about Pompeii, and is enjoying music by Andrea Boccelli. I pray that one day Abbie and I will kneel together in Siena's cathedral, and offer a few bars of our unending song of thanks and praise.

The Initial Unveiling

2010-05-13T19:08:00.000-07:00

So far we've been at the children's hospital every day this week. We get a break today, and then we are back down there tomorrow. Fortunately, it has all been good stuff!!

Monday, we went for a check-up with Abbie's gastroenterologist. I was a little concerned because she is skinny these days. After her intestinal infection in March, and then the surgery, she has lost some weight these past few months. Not only was the doctor not worried, but the reason he was not worried made me almost sing.

"The body has a hierarchy of needs, when it comes to distributing calories. The brain gets fed first. With the gains she is making, it is obvious that her brain is getting what it needs." Woo-hoo!! He also said that her quick recovery from a long surgery, as well as how much taller she is getting, shows that her body is healthy and getting what it needs. A great visit.

Tuesday we went for a follow-up with the orthopedic surgeon. I was startled a bit, but excited, when he decided to take the casts off a week early. Here's what her matching clubs looked like:

Her thumbs were completely swaddled in fiberglass, so we could barely see the glint of the metallic pin holding her thumbs in position.

Kyle decorated this cast within two minutes of Abbie being home after the surgery. Too bad that he used the smelliest, most industrial black marker ever made. Poor Abbie was sitting amid fumes for a couple hours, but knowing her brother loves her more than made up for it.

The fingers were well-padded, which also hid the pins holding her second and third fingers in place.

As the first cast came off, I caught my breath and must have groaned a bit, because Dr. B. said "Hey, you can't gross out now!" To which I replied, "There is a paperclip sticking out of my daughter's thumb. I just need a moment."

I apologize for the blurriness of the following photos - a combination of using a phone camera, holding her with my other hand, and trying not to look too closely....

Abbie will certainly have her longest thumbnails ever with that shiny trellis underneath. The pin extends a good ways down the bone.

The incision along the "life line" is healing well, and it sure is nice to be able to see all of her palm again, without her thumb in the way.

Yep, those pins go right through her skin and into the bones of her fingers. Dr. B is using them to give those joints a good chance to get used to their new positions.

As creeped out as I was looking at the pins, initially, we are now pretty used to them. We just have to take care to keep them wrapped/padded/covered so that they don't catch on anything. Can you imagine? Ouch!!

Speaking of "ouch"...Dr. B. is planning to take the pins out in his office next Tuesday. I trust him immensely, and he apparently does this all the time, but still...this is my baby girl, and I am a little squeamish and a little concerned in thinking about this. We have lots of tools in our pain management bag, and I'll be packing all of them with me.

We also took the dressings off her hips, which look great, and her knees, which are also healing well. She has been cleared to begin range of motion exercises again, so back to work we go!

Before we went to get her casts off, Abbie and I sat outside reading Psalms. Suddenly, it hit me. This date could have marked the day she died. On May 10th, we were advised to disconnect life support, and after hearing the reasons why, consented to do so the following day. Abbie voted to the contrary later that evening, but the effects of having to make that decision have never left me.

May 3rd may remind us every year of what we have lost, but May 11th sings to us about what we still have -- and she is beautiful!

Mile Marker Six

2010-05-04T01:09:00.000-07:00

I didn't realize that this would be the year when May 3rd would fall on Monday until the twins and I were going through the calendar recently to plan their 13th birthday bash. I momentarily caught my breath, and then determined that it was not going to matter.

In the week since that realization I have pressed deeply into Paul's exhortation to let go of what lies behind and press forward. God was so gracious to me in making today look and feel so different than the first day of our journey six years ago. Rainy, voggy, steamy -- it in no way resembled the bright, shiny day our lives changed.

But, don't you know, whenever we make bold statements, like "it is not going to matter" we are sure to be tested severely. And, so it has been today. As I type, Abbie is an inpatient once again, having been admitted through the ER because of bilateral pneumonia. Can I tell you though, I will simply not be moved...I will not.

After I had dropped Genevieve and Abbie off at the ambulance entrance to the ER, I parked nearby. Casting Crowns' "Praise You Through the Storm" came on the radio, just as I was looking up to see the beloved church steeple that saw me through so many nights. I laughed. Out loud. With joy. I realized that I am not the woman who arrived at this hospital in an ambulance and in shock all those years ago.

Entering the ER I hardly glanced at Trauma 1, where Abbie was saved, and the sounds and smells didn't turn my stomach. All day long I had practiced not dwelling long on memories of that day when normalcy died. So, by the time I reached Abbie's bed I might as well have been strolling through the mall. I am not kidding. God wasn't exactly carrying me like he did that first horrific night, it was more like we were dancing together.

I realized that it has become easier lately to let go of what lies behind (the hardest part being not dwelling on memories of who she was before she was hurt), because I feel like I need both hands available to receive all the exciting things being unleashed in Abbie's life.

This girl is utterly amazing. Lying on a gurney with junky lungs, she was still using her eyes to read along with me the novel we are just starting. She paid attention to every conversation. When her pediatrician mentioned that she'd had knee surgery, Abbie turned her head to look at her in shock, and you could almost see her thinking "Wow! Even doctors have to go through this sometimes."

I just can't convey how great she looks, how attuned she is to everything going on around her, and how freely she was swinging her casts around tonight. Tears of awe are falling as I look at her. So brave, so strong. She is not the same little girl who started this grand adventure, either. She has been refined more ferociously than I can imagine, and yet she grins. I am just so grateful that she chose to stay with us.

The week before Abbie's surgery Kyle brought home a little gift for Abbie from school. I had no idea who sent it, and was tickled to read the card from his English teacher. She has obviously been following Abbie, which always touches my heart, but what really endeared her to me was when she wrote about Kyle, who can drive her crazy at times, yet it still one of her favorites. I know just how she feels! She noted that Abbie has an appreciation for Robert Frost, as does she. I had expected a little booklet of Frost's poetry in the package, so was stunned when a beautiful pendant appeared instead. Its words sum up these years so beautifully:

Two roads diverged in a wood...

And I took the one less traveled by,

And that has made all the difference.

May God bless you for your faithful support of our family. I am certain my assignment in Heaven will be drafting Thank You cards, because I will need an eternity to catch up on the ones I owe. Thank you for traveling this narrow road with us...YOU have made all the difference.

To God be the glory.

Abbie's Extreme Makeover

2010-04-28T13:50:00.000-07:00

We drove to the hospital in the darkness on Monday morning, thinking we would be driving home with Abbie later that day, after a 3.5 hour surgery. The picture began to change in pre-op, when we met with her surgeon, Dr. B.

He had spent some more time looking at her Xrays, and refining his plan. In addition to releasing the muscles holding both thumbs to her palms, he recommended releasing the muscles leading to the middle and ring fingers to allow them to move more freely. He mentioned he would be pinning these with temporary pins that he could remove in the office in a few weeks. This was new, so I was digesting that when he added that as he released the thumbs there may not be enough skin to accommodate repositioning them because they'd been pulled in for so long. The answer to that problem could possibly be skin grafts taken from her groin. Another new aspect, and I was really not excited about this one. But, I feel so blessed to have a surgeon in whom we can place our unquestioning trust. So, I walked Abbie into the OR around 7:30, now knowing that the surgery would take closer to 6 hours. She was already asleep after so much early morning excitement, so the transition was easy.

Then, it was upstairs to begin the familiar wait. The first morning after Abbie's initial injury I stood in that same cafeteria and determined that I needed to eat even if I didn't feel like it. So, I decided on a certain breakfast that I would eat every single morning so that I wouldn't ever have to think about it again. Mini-Wheats, a hard-boiled egg, OJ, a banana and water. I reverted back to my old stand-by, replacing the Mini-Wheats with oatmeal. I thought I would see Abbie before lunch was over at 2.

Assuming we'd be going home, I'd not packed anything to stay overnight, so Ray and I dashed home at lunchtime, grabbed some things, picked up some sandwiches and hurried back. It felt strange to leave the hospital with Abbie in the OR, but the sunshine was medicine for us, and I realized that a vigil doesn't have to be held in sterile, flourescent-lit rooms. I was praying just as hard surrounded by palms and bougainvillea.

At 12:45 the OR nurse called to say that Dr. B. was finished with the hands. "Um...OK, did he start with those?" It had already been 5 hours and her legs hadn't been touched. This day was going to be even longer than we'd thought.

Lynette, Abbie's PT, had gone in to observe the surgery -- what a blessing. I was thrilled when she called to give me an update and reported that Abbie had not needed skin grafts for her thumbs.

Around 4 the boys came up the hospital to wait with us (and to eat the grilled cheeses they love so much). When the phone rang at 5 I was looking forward to the invitation to meet Abbie in recovery. Nope. "We are just starting on the left leg. 1.5 more hours." I questioned the nurse to make sure I heard correctly "One and half more hours??"

Finally at 6:45 the surgeon called and asked me to come down. He met me in the hall because they weren't quite ready for us in recovery. I was thrilled when he said, "I normally don't say this, but this could be one of the best surgeries I've done." Hurrah. Our esteem for him multiplied exponentially through this experience. Over 10 hours spent working on Abbie without eating, drinking, or even using the restroom (Ray asked that question, not me:)! I cannot fathom the skill, focus, and endurance that Dr. B. possesses, but am so grateful for it.

Abbie ended up spending almost 3 hours in recovery, as we did have a little bit of excitement. But, once she got all her normal meds, which were now greatly overdue because of the length of the surgery, she calmed down nicely. We made it to her room around 10pm.

They left an epidural in to keep her lower half numb, and we used fentanyl to help with her hand pain. She did great. After 10 hours on the table her lungs recovered nicely, and she was able to come off oxygen competely the day after the surgery.

All in all, Abbie got: releases of three muscles related to the thumbs, pinning of the thumbs into a good position, releases of muscles related to middle and ring fingers, pinning of those fingers into a good position, Botox in her forearm and bicep, removal of her hip hardware (which we now have...it's very impressive and looks like you could hang a good-sized shelf with it), removal of the rods in her femurs and placement of longer ones, releases of her glute muscles, and Botox in her quad muscles. She also has two beautiful blue casts on her hands and forearms. They look like clubs, so her brothers had better stay in line. They will come off, and the pins will come out, in 3-4 weeks.

We've ended up spending two nights in the hospital, which was a good decision, as her pain level seems much better today. We look forward to going home very soon.

Abbie was giddy getting in the van with her Daddy and brothers early Monday morning - -what an adventure. But, she became concerned and began to complain when we pulled into the hospital parking lot. We have one little verse that she and I share during scary times, "When I am afraid, I will trust in Thee" -- Psalm 56:3. I whispered this into her ear over and over on the way to her pre-op bed. When I began to read our daily Psalms to her, a tear came when I realized 56 was on the list. It was like hearing a favorite song just when you need it most. God has been so gracious to us!

Thank you for your prayers - chalk up one more victory for Abbie's Army. We have already seen the fingers on Abbie's right hand move independent of each other - something she could not do before. So, I look forward to some exciting updates in the weeks and months to come.

To God be the glory, great things He has done!

Homeschool Helper

2010-04-06T23:07:00.000-07:00

After visiting the pediatrician today, we were able to reschedule Abbie's surgery: April 26th. We covet your prayers leading up to it, as we have expanded the scope of the surgery a bit.

Abbie lost some weight during her recent illness, and the Botox we are planning to use in her arms is apportioned by weight. The surgeon can only use so many milligrams of it per kilogram of Abbie's weight. There were three planned injection sites on each arm: in the thumb area, on the forearm and in the bicep. In trying to parcel out the limited amount of Botox, and looking at how stubbornly the thumb likes to lay on her palm, we agreed that simply injecting Botox into that strong muscle would not accomplish much. We felt it better to use the available Botox at the other two injection sites and do a muscle release for each thumb. This entails nipping the muscle and then putting Abbie in casts for a few weeks post-op to allow her thumbs to learn their new position.

The lower extremity work will still include removing the hardware from her hip surgery, and replacing the rods in her femurs with longer ones, but we have also decided that since the surgeon will be right there, releases of the gluteal muscles would be helpful. He did this during her hip surgery 1.5 years ago, but said that he "undercorrected" them, because he didn't want to overdo it and have her end up with contracted hamstrings. That is definitely NOT a challenge for Abbie, so he is going to loosen them further now. This will make it easier for her to sit up straight. She can do it now, but as soon as we seat her she scoots her bottom forward and rolls her sacrum under so she ends up sitting in a horrible position. She won't need any casts on her legs, thank goodness!

She is getting back in the swing of school, and worked very hard for me today. I had the voice output portion of her switch sitting on the floor near her chair. As we began doing reading, and she was consistenly using the switch to answer questions, Panda became very curious. He figured out that he could press the switch with his nose to have it say "yes." Abbie and Panda both got a kick out of that! I think she liked having a homeschool helper today.

Because we want Abbie to recover completely from her illness, and want to avoid exposing her to any other bugs, she will not be attending school before her surgery. Afterwards, with casts on both arms, and sore legs and bottom, she will not be ready to go back to school for several weeks. That basically takes us to the end of the school year. The school has offered something called "Home Hospital Instruction" while she is out, but it's only 3 hours a week. We have gotten into a good routine lately, and I think adding in a tutor for only three hours a week would cause more upheaval than it may be worth, so we'll continue schooling on our own for now.

We had a full, wonderful day on Easter. I hope to post some pictures soon. We were blessed with much delicious food, many good friends, and the joy that true freedom brings.

May God bless you today!

Brave Little Soul

2010-04-01T19:37:00.000-07:00

Leaving Seattle, we thought Abbie had turned the corner and would be back to her spunky self in short order. Not so fast. Her fever began rising again, and the diarrhea returned. Her pediatrician explained that this bacterial infection can flare and recede for 30 days or so...ugh.

In light of her current health, her orthopedic pre-op appointment yesterday resulted in us postponing the surgery, again. We had planned to do it in February, but then her leg was broken. We are hoping that this will only be a 2-3 week delay, and given her recurring fevers, started her on Zithromax yesterday.

She seems a bit better today, and is really doing well with her physical workouts. Schoolwork is a whole 'nother matter. She just doesn't have the energy to engage right now, so I've been letting her rest. Math and reading will always be there.

It warmed my heart when Abbie's nurse was asking her about Spring Break. What elicited the biggest smile was when Abbie was asked if she got to see Chase. She loves that brother so much, even now that he is gone for much of the year.

I'm a huge chat group lurker, and recently on one of them was a story that captured the vision I've had in my mind for many years. I've long known that it was Abbie's choice to come back to us, and pictured her bouncing up and down, arm raised as high as it would go (probably held up by the other arm), pleading, "Me, me, me -- pick me. Abbie can do it!" (She still often referred to herself in the third person). Jesus smiled down at her, knowing full well what she was made of, and granted her wish.
This is the story:

The Brave Little Soul
By: John Alessi

Not too long ago in Heaven there was a little soul who took wonder in observing the world. He especially enjoyed the love he saw there and often expressed this joy with God. One day however the little soul was sad, for on this day he saw suffering in the world. He approached God and sadly asked, "Why do bad things happen; why is there suffering in the world?" God paused for a moment and replied, "Little soul, do not be sad, for the suffering you see, unlocks the love in people's hearts." The little soul was confused. "What do you mean," he asked. God replied, "Have you not noticed the goodness and love that is the offspring of that suffering? Look at how people come together, drop their differences and show their love and compassion for those who suffer. All their other motivations disappear and they become motivated by love alone." The little soul began to understand and listened attentively as God continued, "The suffering soul unlocks the love in people's hearts much like the sun and the rain unlock the flower within the seed. I created everyone with endless love in their heart, but unfortunately most people keep it locked up and hardly share it with anyone. They are afraid to let their love shine freely, because they are afraid of being hurt. But a suffering soul unlocks that love. I tell you this - it is the greatest miracle of all. Many souls have bravely chosen to go into the world and suffer - to unlock this love - to create this miracle for the good of all humanity."

Just then the little soul got a wonderful idea and could hardly contain himself. With his wings fluttering, bouncing up and down, the little soul excitedly replied. "I am brave; let me go! I would like to go into the world and suffer so that I can unlock the goodness and love in people's hearts! I want to create that miracle!" God smiled and said, "You are a brave soul I know, and thus I will grant your request. But even though you are very brave you will not be able to do this alone. I have known since the beginning of time that you would ask for this and so I have carefully selected many souls to care for you on your journey. Those souls will help you create your miracle; however they will also share in your suffering. Two of these souls are most special and will care for you, help you and suffer along with you, far beyond the others. They have already chosen a name for you". God and the brave soul shared a smile, and then embraced.

In parting, God said, "Do not forget little soul that I will be with you always. Although you have agreed to bear the pain, you will do so through my strength. And if the time should come when you feel that you have suffered enough, just say the word, think the thought, and you will be healed." Thus at that moment the brave little soul was born into the world, and through his suffering and God's strength, he unlocked the goodness and love in people's hearts. For so many people dropped their differences and came together to show their love. Priorities became properly aligned. People gave from their hearts. Those that were always too busy found time. Many began new spiritual journeys, some regained lost faith - many came back to God. Parents hugged their children tighter. Friends and family grew closer. Old friends got together and new friendships were made. Distant family reunited, and every family spent more time together. Everyone prayed. Lives changed forever. It was good. The world was a better place. The miracle had happened. God was pleased.

While we do wait for Abbie's full restoration, her miracle has already happened.

We look forward with much joy to celebrating Easter -- the confirmation of our hope. I pray that you have a wonderful time of both reflection and celebration as well!

He is Risen!

Good News

2010-03-24T19:36:00.000-07:00

I collapsed on the couch in Abbie's room at 9pm last night, and told Genevieve to wake me at 10. The next thing I knew, it was morning. I suppose two nights of very little sleep had caught up with me, and she is far too kind to wake me. She did the entire night shift on her own!

Abbie seemed to be comfortable, and her, uh...production was beginning to look a little bit more normal. The attending physician stopped by around 11 with the results of the stool cultures. None of the top three suspects is the culprit. It turns out that a bacteria called "Camphylobacter" is the cause of Abbie's problems. It lives in the bodies of chickens. I only use chicken to make gelatin/stock for Abbie, so the source was apparent.

After about three days of infection with this bacteria, it doesn't help much to give antibiotics, so Abbie will not be on any extra medications. And, because it seemed she has turned the corner from her appearance, her temperature swings becoming smaller, and her stool looking better, they released us today! I am typing at the cabin in the mountains!!

There was one critical element to Abbie's discharge, which reiterated once again how the Lord watches over her. Because this infection is food-related, we cannot use any of the food we brought with us, and need to use a special canned formula. Because we are going to be here for a while, the hospital was scrambling to pull together enough of the formula for us.

I called my friend, Sue Searles (Luke's mom) because she lives in Tacoma, and has been looking for a new team to help with Luke's muscle tone. After I spoke to Dr. A., the physiatrist, yesterday, I was so excited to tell Sue about this wonderful resource in her area. I was thrilled when Sue said, "Oh - we have an appointment with her next week." Sue blenderizes Luke's food, just like we do for Abbie, and has for years. So, I was surprised when she told me that she'd begun stockpiling cases of the very formula Abbie needs, because her family is going on a cross-country trip this summer.

"Hey, I can just bring you a case!' she offered. I hated to have her drive the hour up the freeway, so I told her I'd try to have the hospital work it out. When it seemed to become a big glitch today, I phoned Sue again, and told her that we could really use that case of formula.

Her answer surprised me yet again. "You know, I just love that drive to Cle Elum. Let me bring it up to you tomorrow!' Now..you must know that this will be a 2.5 hour drive, each way, for Sue. She is one of the busiest people I know, so this is no small effort for her. What a generous, and critical, blessing she is giving us!

Would you say a special prayer for Sue and her family tonight, including her little miracle man, Luke? And, would you keep praying for Abbie? She is glad to be home, but still uncomfortable. She doesn't seem as sleepy, but now she seems to be experiencing more pain instead of sleeping through it.

She was happy to hear the voices of her cousins, Cooper (7) and Oscar ("four-and-a-half", he would like you to know) last night. Because she was in isolation, they couldn't come into her room, and she was rolled onto her side looking away from the door when they arrived. However, when she heard "Hi Abbie!" she turned her head as far as she could to see them....love that! It was medicine for me to see my sister and her boys (and also a treat to chow down on yummy Vietnamese food they brought.)

In so many ways we were blessed through the challenge, and we are so thankful to be home. Your prayers paved the way and carried us along....bless you for that!

Not the Vacation We'd Planned

2010-03-23T17:27:00.000-07:00

Spring Break...ahhh, our family's long-awaited time of refreshing and renewal in the mountains of Washington. We flew overnight on 3/19, with Abbie sleeping all the way, a blessed first. She always looks forward to laying in front of the fireplace, but by Saturday evening, her rosy cheeks told us we were overdoing it. We turned it off (yep, it's fake...but still enjoyable!), and thought nothing more about it after she seemed to cool down.

Sunday night I was up until 3:30 with her, managing her breathing. But, when I finally put her to bed she was off oxygen and looked peaceful. I was satisfied enough with her condition that I went snowboarding with the boys on Monday. When we returned home I found that her fever was breaking through Motrin, and her heart rate was very high. We'd been noticing that she'd been having a lot more dirty diapers in past few days, but they seemed normal otherwise. Then....PPPP.UUUUU. The odor changed significantly, and we thought we saw blood.

Looking at all this together we decided it was time to go the urgent care clinic in the small town nearby. They did a blood draw and found that Abbie's white count was over 23,000 (normal is around 7,000). The P.A. felt that she was fighting a major infection, and that to receive proper care we needed to take her to Seattle Children's, a 1.5 hour drive over the pass.

We were fortunate that both the weather and road were clear, and arrived at 11:30 pm. She was admitted this morning, and the attending physician feels strongly that she has a bacterial infection in her gut, we just don't know the type yet. E. Coli, Shigella and Salmonella top the list of suspects. We are awaiting culture results that should arrive tomorrow and will dictate the course of treatment, which varies widely for those three. Given what she's got brewing, she looks pretty good otherwise. She is very sleepy, and we are keeping her discomfort under control with Tylenol. Her respiratory system is thus far unaffected, praise God!

Genevieve, our precious Genevieve, is camping out here with me, while Ray returned to Cle Elum to be with the boys. As the three of us drove through the darkness with Abbie last night, I was praying, and reminding myself that the insistent grace of God allows me to live without fear. As we neared Seattle, I was deeply impressed that Abbie was being "sent" to this hospital -- not because she needed care, but for a larger purpose. Even in the darkest of times, a hint of God at work gives me a twinge of expectation and excitement. I wondered what He was up to.

I think I already have the answer. We were visited by a kind member of the hospital administration today, and when I mentioned my envy of their therapy pool, he responded by saying they are trying to really create a center of excellence for CP here, and have brought in a very talented woman from Denver Children's to head up the project. He said he would ask her to meet with me during our stay.

Just a few hours later, the doctor he had mentioned, a physiatrist, arrived at the room. She spent a very long time talking about all the aspects we manage, strategies to try, and things to balance. She also examined Abbie. What a precious gift it was to gain new insight from a different strand of experience! This has made this stay almost worth it. She mentioned how odd it is to have a girl who has experienced an injury profound enough to give Abbie such physical limitations while she still retains such cognitive abilities. I agree that Abbie is a rare jewel! I must admit that it did feel good to receive validation for all the hard work Abbie has done all these years. God is good...all the time!

Please, pray for our sweet girl: to overcome whatever bug has taken up residence (immediate eviction is warranted!!), for her comfort, for a release from the hospital and recovery in time for her to enjoy a little bit more time in the mountains, and for a smooth trip home. I am kind of dreading the long flight if we are still dealing with frequent, messy, stinky diapers. We will not be well-liked in that cabin, that is for sure!

But most of all, pray with thanksgiving for God's unceasing care, provision, and protection, and the incredible plan for Abbie that we see unfolding every day!

Neurodevelopmental Assessment

2010-03-17T18:47:00.000-07:00

Abbie and I enjoyed a drive out to Waimanalo today, to see her neurodevelopmentalist, Linda Kane. Abbie last saw Linda back in September, when she assigned a whole new program that centered around rhythmic exercises that we dubbed her "dances." Soon after beginning the new program, Abbie's cognition (or perhaps just her expression of her cognition) shot through the roof. So, we were excited to see Linda today, and have her see in living color all the changes we've experienced.

As expected, it was a wonderful visit! I love getting black-and-white data to get a feel for how we are doing, especially when it is so positive. For example, Linda measured Abbie's visual reading comprehension to be 4.8, which means it equates to the eighth month of fourth grade. Woo-hoo. We felt that Abbie was ahead of her peers, but didn't expect that she is over a whole year ahead!!

We had her do the following word problem for Linda:

If you have one dime and the ice cream costs 25 cents, how much more money do you need?

Out of three choices (5, 10 and 15 cents) Abbie quickly chose 15 cents with both her arm and eyes. The other great thing about working this problem, is that Linda got to observe Abbie tracking with her eyes. We have been working on and waiting for that for SOOO long!

Her processing time has gotten much quicker, which we observed both in the academic areas, as well as moving her body on command. Plus, Linda just felt she look really, really great. I had to agree that it wasn't just the St. Patrick's green making her look like an angel!

We came away with a broadened program, some great academic advice, and a sense that all of this has been worth it. All the days of doing the program, all the times of getting back to it after we'd fallen away, all the days of reading, reading reading when we weren't sure if she was grasping it.

On the summary worksheet that I had to prepare prior to the appointment, I only put one comment in the "Questions and Concerns" section: "How to keep up with her!!!"

What a blessed challenge we have before us. God is good!

He Sees

2010-03-15T20:17:00.000-07:00

Abbie was our happy companion at Matt's wrestling banquet last night. Even though it was noisy with 300 people there, she did not want to have the cough (and suctioning) she desperately needed to clear her airway. She waited until we were on the way to the car to get it all out. It's interesting to me how in tune she is in social settings like the school meeting last Thursday, as well as the banquet.

After the banquet we went to pick Daddy up at the airport. She always gets special pleasure of being out and about at night (read: after bedtime), and was especially happy to have her Dad home.

Her body is doing wonderfully now after about a week of intense interventions. I noticed last week that it looked like she was getting a yeast infection, which told me that her overall body voltage was very, very low. We were also noticing that it was difficult to get her lower legs and feet to stay warm. Since this week was Spring Break at her school, I didn't have to worry about her being too "sick" to go to school. The quotation marks are because she didn't actually get sick, but the markers of the changes in her body can sure look like it. So, instead of being frustrated or worried, I just thought "Do what you know to do." Often I find it's not that I don't have answers, means, or methods, it's that I'm not executing them faithfully.

Lots of mucous and extra sleep later, her legs are now staying toasty warm, her muscle tone is significantly lower, and she is using her voice all the time...seriously, all the time!! It is so cute.

A friend sent me a YouTube link today to a video that certainly adjusted my perspective and refreshed my soul. If you are a parent toiling in what feels like invisibility, this one's for you!

The Invisible Woman

May we all find joy in our life's work, whatever it may be, knowing that all is seen by the One who loves you most!

The Eyes Have It

2010-03-13T00:33:00.000-08:00

We had a special visitor last week, who came bearing a beautiful bridge. She didn't lug steel girders up our front stairs, but she did carry some heavy-duty suitcases! Kristine is a representative of Tobii, which makes communication devices. She came to the house to trial a device with Abbie that allows her to make choices by just looking at the computer screen. How cool is technology??

I didn't get any video of the trial, but here is a YouTube link that shows something similar to what Abbie did:

http://www.youtube.com/watch?v=2i9-0Rd_r-g&feature=PlayList&p=B0899285A6E6AC80&playnext=1&playnext_from=PL&index=9

When Kristine first set the device in front of Abbie and told her to look at the screen, we didn't get much response to the basic start-screen. "Oh...duh!" said Kristine, switching to a different screen. "Abbie, I need you to find the puppies on the page, OK?" Wham-o! All she needed was the right motivation. It was amazing, encouraging, and thrilling to watch!

We were blessed to have Abbie's longtime speech therapist. Lisa, here to watch, along with her husband who works at the company bringing this device into Hawaii. At the end of the session, I was trying to contain my excitement, and remain rational and realistic. These devices cost as much as a new economy car, so I asked, "How well does she need to be able to use it during a trial to qualify to receive her own device?"

Lisa said she thought Abbie did pretty well, and was surprised at how far she has come with control of her body. "A year ago I would not even have thought an eye-gaze device was on the horizon for her. She can definitely do this!!" Hurrah for Abbie!

I suppose that trial underlines what we are seeing in general with Abbie these days. She is gaining more and more control of her body as time passes, especially when it comes to doing things on command. I mentioned her swallowing in the previous post, the device trial showed off her eye control, and today she shocked me with her arms.

Maria was here working with Abbie on the massage table, and I stepped into the other room to get some oils. When I returned Maria said, "OK , Abbie, show Mummy how you can move your arm." Right away I saw her hand lift up and I cheered. Maria gave me a look that said, "Shhhh...just wait." I kept encouraging Abbie and was excited when I could see daylight peeking under her elbow. Again, I started rejoicing, and got the same look from Maria. After a little more encouragement, Abbie's arm suddenly shot up off the table into midair. I was speechless. She then moved it around for quite a while. I am so excited for her when I see her body cooperating more easily, since she has long known WHAT she wants it to do, and is now figuring out HOW to make it happen.

She is also using her voice more and more. As her school speech therapist was peeking in on Abbie last week she said, "You know, she is using her voice a lot. Do you think we can use that for communication? Can she do it to answer questions?" At that time I said that her voice use was definitely volitional (on purpose and meaningful), but probably not at the point where she could do it on command. I now think she is quickly approaching that point.

She accompanied the twins and I to a meeting at school last night. Abbie used her voice to "comment" on what the speaker was saying at all the appropriate points...it was hilarious. When we were tucking her into bed that night Matt said, "You know Mom, we pray for Abbie to be healed every day, but it's been happening all along in tiny steps we can't really see. Look how much better she has already gotten!!'

We have been crying out to God intensely over these past weeks, mostly in praise, and the answers He has been providing humble us in their specificity, timing, and perfection. We are utterly blessed!

BIg Gulps

2010-02-22T20:46:00.000-08:00

Swallowing is one of those skills we take for granted, until it's lost and you realize how many precise functions make up this precious ability.

After her initial injury, Abbie had a trach placed in part because she did not have a good enough swallow to protect her lungs. With her trach tube in place, we began a therapy called Vital Stim, which strengthens and trains swallowing. She was progressing nicely, even though she did not find it a pleasant experience.

Then, we decannulated her. Getting rid of that tube was a huge victory, but the open stoma in her throat meant that she couldn't build up adequate pressure in her throat to produce good swallows. It seemed pointless to continue Vital Stim until her stoma closed. At the time I made that decision, I didn't know it would be a four year delay!

Abbie went for a Vital Stim evaluation last Friday, as part of the process to request authorization for a round of therapy. What a difference these years have made! Although we have not worked on oral eating while we've been so busy with other things, the progress was obvious.

Abbie will now swallow on command. This is huge because it allows us to involve her in the therapy -- she is not just surviving an hour with electrodes on her throat. She has begun to involve her lips in the movement, which is another big step. Most of all, we have been able to carry that hour of therapy into the days after, as I ask Abbie to practice her swallowing. She is rightfully proud of herself, and enjoys our enthusiastic responses to her efforts.

I am hoping that our request for this therapy will be approved. It's not so much that I'm anxious to transition Abbie to oral eating. That is definitely a "someday" goal, but for now I would be thrilled to strengthen her swallowing enough to prevent saliva from seeping down her throat, which then leads to frequent suctioning. Our life would be so different if that darn suction machine did not have to be such an ever-present companion!

Panda is becoming Abbie's little buddy. After a nice walk to the beach yesterday, his favorite place to lazily relax was right next to her, where she could put her hands in his coat and feel him breathing. What a pair!

Our current schedule, which has me at school the whole time Abbie is there, and then trying to fit the rest our life in to the other hours of the day is getting challenging. (Read: I am exhausted!) I am so happy to be there, and so thankful to be allowed to help, but we are searching for ways to find a balance so we all don't crash and burn. Right now, this is our biggest prayer request: stamina, discernment, and balance.

Two little personal notes: Thinking of you Cheshires - especially the kittens...our Father is ever near the broken-hearted.

And, R.I.P Oreo Sutton --- thinking of you guys as well.

May God bless you today!

A Valentine's Day Surprise

2010-02-17T22:20:00.000-08:00

For a sweetheart like Abbie, we wanted to do something very special on Valentine's Day. So, we got Kung Fu Panda. Nope, not the hilarious movie, but a real, live, snuggly one.

Now, our version does not live on bamboo, but rather dog food, treats and lots of love. Meet the newest member of our family:

Our little Panda boy, who turned one the day after he came to us, is a Havanese. Hava-who?? That's what I asked when we first found this breed during an online search for breeders on Oahu raising hypoallergenic, non-shedding dogs.

Originating in Cuba, the the Havanese were the playmates of the children of the royal court in Havana. As I read the website (www.havanesehawaii.com), I thought, "this is too good to be true!"

"Extremely intelligent, loyal, very loving, playful and always eager to please. Nonshedding, hypoallergenic and odorless. A very people-oriented dog, they will follow their people around the house but are not overly possessive of them, showing no jealousy or aggression to other dogs, pets or humans"

Well, it is all true. He just could not be a better dog. When I introduced him to Abbie, she was laying on the floor. He got on his tummy and scooted his head onto her lap, splayed all his legs out to lay completely flat, and then held very, very still. He knew. I don't have any pictures of them together yet, because I have been facilitating their time together.

His hair feels like angora, so Abbie really enjoys petting him. He doesn't get skittish when she coughs, or even when she's suctioned. The first morning he was here, every time Abbie coughed in the other room he would stop what he was doing and alert, making sure that I heard what was going on.

Having Panda come to our home, all grown up and ready to just meld right into our family has been a real answer to prayer. We've wanted to get a dog for Abbie for a long time, but knew, given the demands of our daily life, that it would have to be exactly the right dog. None of this would have been possible without Pam and Richard, the breeders. Here they are with Matt, RJ and Panda.

RJ wanted to surprise Matt as well as Abbie, so Matt thought it was just a boring Sunday afternoon until a dog with a big red bow showed up.

That moment was a lot of fun! We feel very blessed to have him.

Abbie is back in school this week, and doing well. She's so excited that she's been wide awake when I go to her at 5am. We had a great Speech Therapy session at school, where the therapists identified some new switches to use, and new places to use them. I am excited for Abbie, as new doors open for her -- and, as always, incredibly proud of her.

May I ask you to pray for her body, as we attempt to get her weight-bearing again after her injury and illness? Please pray for soft muscle tone, proper leg rotation, and comfort in standing.

May God bless you today!

What We Always Knew

2010-02-11T16:23:00.000-08:00

I suppose it's not rare to have adolescent children look askance at their mothers every now and then; I often supply my sons with good reason. Last night was a great example. What should a 12-year-old think when Mom is just sitting quietly on the couch, working on the computer, when suddenly she is gasping, fluttering her hands beneath her watering eyes, and unable to speak in sentences?

My precious boys, though, do give me the benefit of the doubt. They at least ask "What's up?" instead of just collecting one more bit of evidence for the "Mom is Crazy" file. During this most recent episode, I just pulled Matt over to the computer, and had him begin reading this article:

The iBrain

I hope you will go read it, especially if you are a brain-injury family. Finally, FINALLY, there is a study to affirm what we have always known and said about our loved ones. They are in there!

The centerpoint of the article is a study using functional Magnetic Resonance Imaging (fMRI) with patients classified as "vegetative." What they found is "Human minds stripped of every other power can still control one last organ—the brain."

When they asked the patient to imagine doing certain acitivities, the appropriate area of the brain lit up, even if no outwardly-observable movement was created. The researchers were able to elicit answers to questions by asking the patients to think about playing tennis for “yes” and navigating through their town for “no” (since these thoughts light up different parts of the brain.)

The article speaks to “the mind using the brain as a communication device.” In other words, the idea that “Abbie” is not her injured brain, but rather the mind, soul and spirit that use that brain, has been affirmed.

Also affirmed is that our loved ones’ awareness and understanding cannot be measured by their outward actions or reactions. This should necessarily shift prevailing assumptions about brain injury survivors, their worth, dignity, and potential. The article called the patients “buried alive” inside paralyzed bodies. Can you imagine anything more scary or intolerable? Families have always known this, and thus have refused to give in, give up, or give out. If you were buried alive, wouldn’t you pray for someone to love you enough to keep digging?

I am also more hopeful that someday there will be technology allowing brain-injury survivors to communicate by using the only body part they can still control – the brain.

Hope abounds, and joy is ever-present. Abbie is overcoming a head cold and we look forward to being back in school next week. She has been working hard on memorizing Bible verses, and learning all the states and capitals.

What an amazing journey. God is good…..all the time!

Twists and Turns

2010-01-27T17:53:00.000-08:00

I've waited over a week to write this update, to ensure the words would be issuing forth from a rational, rather than emotional, place.

As I've written, Abbie really enjoys school, and I felt her transition was going very well. The only glitch I sensed was that the staff was anxious to have me out of the classroom before they were prepared to safely handle Abbie. I worried that they did not yet know what they didn't know. I have never hoped more strongly to be wrong.

Alas, I was not. During the first in-school therapy session that I did not attend, Abbie's left femur was fractured, her left ACL was strained, as was the lumbar region of her back, as she was put into a twisting motion, while seated, that her body could not accommodate. A staff member indicated there had "been an incident" during therapy.

As I picked up Abbie to seat her in her wheelchair, she began to scream and cry. Blotchy face. Big fat tears. I had only seen Abbie like this once before, and I got the same sick feeling knowing that she had probably fractured one or both of her legs. I touched base with Ray and asked him to call ahead to the Kapiolani ER.

Lots of films and a few hours later we found that the injury was limited to her left side, and because the fracture was a spiral, it was more stable than a through-and-through. It is high up on her left leg, so the surgeon felt it was reasonable to give her a chance to heal without putting her in a dreaded spica cast. I am so grateful for that. We just have to be very aware of how we position and move her -- so far, so good. We will have follow-up Xrays on Friday, and hope to see healing well underway. Because Abbie's bones are so weakened, it does not take her long to get back to her baseline strength, which is a mixed blessing.

Because of the fracture she cannot bear weight for three weeks, so she will come out of this with even weaker bones as her bone density melts away. This is a definite concern as we plan her return to school.

Return to school??? Yes. Although many people we've talked to have advised to us to retain counsel, to consider legal action, or at the very least to throw a big huge fit, we don't see any of those contributing to a positive long-term solution for Abbie.

So, we had a meeting at the school on Monday which Ray and I both felt was productive. This injury is a game-changer and although, as Ray put it, we have no desire to be permanent helicopter parents, they are going to have to get used to me being there until WE determine it is safe for Abbie. There is a deep cultural bias against this within the Department of Education, but we have the great fortune of working with an outstanding principal whom we trust. We have confidence that we will be able to work through this. We have to.

On the upside, Miss Abbie has not been idle during this unplanned vacation. We've used it to address more items in her IEP. We've not worked on money very much, so we introduced that today. In two hours she went from identifying coins to doing story problems like:

"If the ice cream cone cost 25 cents, and you have one dime, how much more money do you need?"

We tried to trick her with this one:

"If the comb costs 15 cents and you have three nickels, how much more money do you need?"
She correctly chose zero! No tricking her!!

In all things there is a silver lining. I think Abbie has, unfortunately through pain and suffering, proven to the school that I am not an irrational, overprotective mom, but rather an experienced, wise advocate for her. I pray her sacrifice will be honored as we move forward.

We read our Psalms out of Abbie's "Discoverer's Bible" today, which is written at about the third-grade reading level. The simplicity of the language often sharpens the message. It was fitting that today we relished once again, in a fresh flavor, Abbie's touchstone verses:

Psalm 27:13-14
Here is something I am still sure of.
I will see the LORD's goodness
while I am still alive.
Wait for the LORD.
Be strong and don't lose hope.
Wait for the LORD.

A Frostie

2010-01-11T23:57:00.000-08:00

"Whose woods these are, I think I know.
His house is in the village, though.
He will not see me stopping here,
To watch his woods fill up with snow."

-- Robert Frost

These are the first four lines of the poem we introduced to Abbie last Wednesday. They are also the lines she memorized over the weekend. How do we know this? Rae figured out a way for her to prove what we suspected she'd already learned.

Rae wrote half of each line on an index card, she then put three of the cards on the board. Without reading the choices to her, Rae would ask Abbie, "What comes next." She didn't miss once. So, not only was she able to read the cards, written in ballpoint pen at a normal size, but she was able to correctly sequence the lines. Not bad for three days' work!!

We thought we would show this to her teacher today, and this opened my eyes to the challenges ahead, which are surmountable but present. Abbie was taking longer to answer, and we finally figured out that much of it had to do with her positioning. Because she cannot adjust her own body very well, if she is not in a position that makes it easy to use her switch, she is not able to activate it. She still did OK, though. I am just hoping that when she takes a while to answer questions or do her board work the bias will become "what is preventing her from using her switches?" rather than "she is not understanding this" or "she takes a really long time to think."

We've become very adept at making it as easy as possible to communicate, but they've asked me now to step back and allow them to take the lead. I am biting my cheek as I type, hoping it will stimulate the right words to describe how I feel about that....scared, excited, nervous, hopeful, wary, trusting..it changes from one moment to the next. But, I do feel that this is the next step in Abbie's Grand Adventure with God, and if nothing else, I trust in Him and in my girl who outdoes expectations at every turn.

One other little "peek behind the curtains." We've been meeting with dizzying numbers of people in recent weeks to determine and coordinate the appropriate services for Abbie. This being a public site, any and all are welcome. However, it turns out that some in our service net read Abbie's website to determine what kinds of services she needs...I am not sure who, but the word we've recently received is that because, according to this blog, Abbie has gotten so much better, we should be prepared for less services.

Ray's eyebrows rising to meet his hairline is fair warning that steam will be erupting from his ears in short order. The above situation elicited that look, and he curtly asked me to leave the room so he could set the record straight. I knew what he was going to say, so I politely declined to leave, and spoke on my own behalf. He was going to tell them that I focus on the positive, the hopeful and the good and that doing so is essential to my survival through all of this. His point may be valid, but I boiled it down to "we choose to make our victories and progress public, while keeping the challenges and struggles a bit more private" (except for now, apparently!)

For whoever is using this blog as an assessment tool...first off, shame on you -- there is a reason we fill out so much paperwork and and coordinate with so many people. This blog is for family, friends, and fellow trekkers. These people deserve to hear how wonderful our little girl is doing without the continual layering-on of the reality of life with a brain injury... we never get a full night of sleep; we are constantly battling her body to keep it from contracting, from being injured or requiring more surgery; her respiratory status requires constant vigilance; caring for her is the most demanding thing any of us has ever done. Unless you have walked a mile, or a day, in our shoes you cannot understand. That is part of the reason we don't prattle on about it....those who've not been here can't comprehend, and those who have don't need the explanations.

Whew -- I think that qualifies as a rant. I apologize, but I guess it's reality. Abbie's soaring cognition is one precious aspect of her life, but the things listed above are always in play as well. We could really use your prayers for those areas - particularly about keeping her body as limber, aligned and functional as it can possibly be.

Back to our Little Miss, who has become so enthralled with not only "Stopping by the Woods on a Snowy Evening", but also other works of Mr. Robert Frost (as we call him), that I am now calling her my Little Frostie. In fact, in her honor, I will close with his sublime words, as they seem so fitting on a busy night:

"The woods are lovely and dark and deep,
But I have promises to keep.
And miles to go before I sleep.
And miles to go before I sleep."

May God bless you!!

First Day of School

2010-01-06T23:42:00.000-08:00

I know, I know...this post should certainly start with the requisite first day of school photo! It was raining today, so our normal photo-op spot was unusable. Once we stepped foot on campus, the whirlwind began, and although I did pack my camera along, it never made it out of the bag. We'll try again tomorrow.

Miss Abbie was awake at 5:30, all grins and giggles, with anticipation gleaming in her eyes. This day was finally, truly here! As silly as it sounds, it was an all-out sprint from 6am on to get the boys out the door, and then get her fed, changed, dressed and ready to get out the door by 8:15.

I wanted to dress her in one of her pretty outfits -- you know, "matchy-matchy" from the socks to the hair ribbons. However, I pushed pause on the "Mommy Plays Dress-Up" game long enough to think about what an average third-grade girl would want to wear on the first day of school. Jeans it was. Of course, she rolled to the van looking stylish anyway (and yes, her ribbons did match her shirt...I cannot help myself). Unfortunately, all the lead-up excitement had pooped her out, and she fell asleep during the drive.

She opened her eyes briefly when we arrived, but then proceeded to nap deeply for the next hour. I didn't have time to be too disappointed because so many staff members were in the classroom to greet and work with Abbie on her first day. Speech, vision, public health nursing....I felt like I was the pinball pinging between questions and conversations. But, it was all fruitful, and I was grateful to have their input from the beginning.

At last, around 10 Abbie really woke up, so I suggested we start the academic portion of her day. Woo-hoo, was she on today!!! We are using the same literature-based program we've used at home, and the book we've selected for this month is a book of illustrations accompanying Robert Frost's "Stopping by the Woods on a Snowy Evening." She was so intent on the words and illustrations, and vocalized quite a bit in response to questions and observations. The aides could already see that she was intellectually and visually engaged. One of them did give me a look of surprise, though, when I mentioned that one of Abbie's tasks during this unit will be to memorize the poem. I think she'll be even more surprised when she sees how fast Abbie will accomplish this.

After we were finished with language arts, we moved to math. Because her IEP goals were written quite a while ago, she is now way beyond them. I am thankful God dropped just the right word into my mouth to explain and justify to her why she was going to have to do such easy things.

" Abbie, at the beginning of the school year everyone -- your brothers, your friends, your classmates -- they all do something called 'review'. Review covers things you already learned, and are easy for you, but you still have to show your new teachers that you know them. So, today we are going to review your numbers and adding 1"

While this did help her be patient, I have to admit that she got irritated by being asked to identify numbers between 0 and 31. It reminded me of how aggravated she used to get when I kept making her go through the alphabet. But, she complied and showed them she knows the numbers . We then had her do 7+1, which did not take her long. Because she was getting impatient, we then let her do something like 9-3+1, which made her happier but did not take her long to answer. Finally, we did let her do one multiplication problem, even though it's not in her IEP. 6x3 did not take her long either.

We did some calendar work, and she was quickly able to pick out 2010 as the correct year, even though her choices were 2009, 2010, and 2011. Every time the aide or I thought something might be too hard, I just said, "let's see what she does"....she succeeded every time.

We did have a little meeting mid-morning to deal with some miscommunications regarding nursing. The resolution means that Abbie will be staying at school until 1, instead of 12. I think this will be a good thing for her, because it means more time to work when she's really awake and ready to go.

She glowed with contentment when we arrived home. Then, I said the magic words, "Abbie, you get to go to school again TOMORROW!!" She grinned, as if it were too good to be true. What a precious angel. I am so excited about what new levels she's going to be able to reach with a whole academic team supporting her. Her life just got a lot bigger today, and her spirit is soaring in all that new space.

Happy 2010

2010-01-04T18:15:00.000-08:00

I had to write that number in the title just to make it seem real. I can't believe we're already a decade into the new millenium. I apologize for such a long lapse in updates. Catching up is going to require a few separate postings, because so many great things happened in December.

One of the big highlights was welcoming Chase home from college. We were happily surprised at how much he had matured in just 2.5 months....and thrillingly shocked that he got a 4.0 his first quarter at school! Abbie was very happy to have Chase back, as she had been getting impatient for his arrival for the last week or so before he came home. I'm glad that Chase has a late December birthday so we could celebrate with him.

There may be 19 of them, but these candles looked straight out of a Dr. Seuss book!

Can't believe this is his last "teenage" birthday cake!

The week of Christmas was wild: Kyle got his wisdom teeth out (12/21), we celebrated Chase's birthday (12/23), and attended a wonderful Christmas Eve party. But, in the end we enjoyed a quiet, beautiful Christmas morning at home. As always, the kids went through their stockings by candlelight. This year I focused on getting video, which has not been our strong suit through the years. So, I don't have a ton of pictures from Christmas , but here are a few:

The host of the Christmas Eve party made an appearance as Santa. Unfortunately, this did not go over well with the under-2 set in attendance. The chorus of wee howlers made me grin as their mommies tried to snap "happy" pictures. I was glad to have a nice picture of my sons -- with no tear-stained cheeks! My, how far we've come.

Abbie was tuckered out by the time Santa came to visit, but I wanted to get a photo anyway.

Christmas morning found Abbie snuggling in her new snowman nightgown, surrounded by the world's most faithful elves.

The boys were especially caring with Abbie that morning. As we were doing stockings, Kyle leaned over and said, "Abbie, would you like your glasses so you could see better?" He got a resounding "yes" to that question, and the spectacle of Christmas morning came into clear focus for one smiling little girl.

The brothers had asked for just a few things, and so we opened their presents first while Abbie waited patiently (we thought.) When they were finished we asked, "Abbie, do you want to open your presents now??" She straightened and raised both of her arms as if to say "Helloooooo! What do you think? Bring it on!" She had so many delightful surprises waiting for her....a snowglobe with a ballerina in it, a huge Tinkerbell stickerbook, many cute "school" clothes, an embellished piggy bank, and a scroll fresh from China, with her name in kanji and English.

As we talked about the scroll, a precious gift from friends recently back from China with their new daughter, I was once again impressed with Abbie's memory. She was enjoying looking at it, but when I told her that it came from China, where Ping the duck lived on the Yangtze River she lit up and began smiling. We read the Story of Ping last May, and still she remembers...

Yes, there was still tugging on my heart, and thoughts of "how great would this day be if she were 'normal'?" But, the reason for the celebration soothed my spirit and yet again encouraged me that now is not all there is...we celebrate that which we only know dimly. When we see in full, any twinges of disappointment or shadows of grief we've experienced will vanish forever. And...my ballerina will not be in a snowglobe!

Priceless

2009-12-10T23:18:00.000-08:00

I experienced some serious stage fright today, on my way to speak to Abbie's future classmates. Not because I was scared of a roomful of third-graders, but rather because I felt such pressure to do a good job for Abbie. I went there to win their hearts, to lovingly ask them to befriend my precious girl, and to be Abbie's voice. I prayed out loud all during the drive, because I felt such a sacred responsibility to Abbie.

The time with the kids was wonderful! They listened intently, asked good questions, and were very upbeat. I almost lost it before I started, as one of the little girls placed a lei around my neck - such an unexpected kindness.

I think it really helped that they met Abbie on Monday. I described some of the special things Abbie has, like a G-tube button, suction machine, and communication devices. We also did activities to help them understand what it's like to have spasticity, and a brain where answers may take longer to process, but are still correct. It was a lot of information to throw at them, but I started and ended with the most important thing: Abbie may be a little different on the outside, but on the inside she is just like them.

Then, I said, "Abbie's invitation to you is to be part of a miracle. There are many who would say she should not be alive. Many said she would never breathe on her own, but she does. They said she would never see - and for a while she didn't. But, now she does. They said she would never talk, but she's trying. They said she would never read, but she does. They said she would never do math...but she loves it. Because of all these things, many people, including me, call her a miracle. Sometimes you have to wait your whole life to be part of a miracle, and sometimes it comes right to your classroom door. So, Abbie would like to invite you to be part of her miracle - YOU can help her get better!"

As I was leaving, Mrs. T, Abbie's regular-ed teacher handed me a book made by her classmates. How do you turn printer paper into gold? Cover it with love, and illustrate it with joy. On each page was a picture of one classmate, along with a letter written to Abbie. Although I cannot scan any of it to show you, I must share some of the phrases that brought tears to my eyes.

One girl ended her letter by saying, "If anything ever happens to you, I will always be there for you." One boy ended his letter with, "We will be happy to have another member of the class." A girl said, 'I will teach you how to do something you like to do at school." Such tender hearts!

Abbie looked carefully at each photograph, and was excited to hear how many of her classmates also enjoy reading, math, and music. At first, she will mostly see her classmates on the playground, but I am even more hopeful now that she will not be lonely out there! What a precious, long-awaited gift they have to give Abbie, and what fills my heart is that they realize it, I think. They glimpse the special role they may play in a very special girl's life.

God is good!

Spectacles

2009-12-08T19:47:00.000-08:00

We visited the neuro-ophthalmologist for the first time in four years last Friday. So much time had lapsed because I didn't really see the need for frequent follow-ups, since assessing Abbie's vision with charts was pretty much impossible.

Once again, Abbie's journey has made me thankful for technology. It turns out that there is now a computer that can measure and test the eyes without any participation from the patient. The optometrist got the first measurement, said, "hmmmm", and then repeated it. The machine spit out readings that showed Abbie is pretty darn near-sighted. She is now about the age I was when my eyesight went off the cliff.

We then saw the ophthalmologist, who confirmed the readings the old-fashioned way, with a light and varying lenses, which was even more impressive to me than technology. He got the same results. -3.75 in one eye, -3.25 in the other. He felt that since she is reading, and has enough vision to see near objects, we should not feel required to get her glasses. My bias, however, is to make everything easier for Abbie whenever I possibly can. I think that her nearsightedness could explain why she does not engage in things across a room, rather then just chalking it up to brain injury as we've always done. So, I am excited to see if a cute pair of glasses (pink and purple are available) will broaden her world.

Speaking of broadening her world, Abbie went on her first school field trip on Monday, even though she hasn't officially started school. We met all the third-graders at the high school gym just up the road. The high school "Health Academy" students were putting on a health fair for third-graders from many schools. So, it was noisy and full of energy. Abbie had been on oxygen earlier in the morning, prompting a decision to cancel. But, once she got better, we went because I knew her heart was set on it. I am so glad we did.

The regular-ed teacher is wonderful, and assured that Abbie was included in everything. At one station, empty packages of various snacks and drinks were passed out for kids to assess their sugar content. Abbie looked at hers carefully, and then we measured out the 22g of sugar to see exactly how much of it is contained in 5 little miniature Reese's peanut butter cups. Yikes!!! Don't think I'll be eating any more of those....ever.

Mrs. T, the teacher, had read part of a story I've written in Abbie's voice to the children, explaining her life. They were very curious about Abbie, but the forum did not allow them to interact with her much. I will be going to read the rest of the story, answer questions, and do some show-and-tell this Thursday. Would you please pray that most of all I can leave them with open hearts, so that Abbie will be warmly and boldly welcomed in January?

Another spectacle today has caused a time of introspection for me, as it has for many in these islands, I am sure. "The Eddie" ran today -- or, more properly, The Quicksilver in Memory of Eddie Aikau Big Wave Surf Contest. For those outside Hawaii, this contest can only be run when waves top 20 feet, so the last time it ran was 2004. Today, with wave faces of 35-45 feet, Waimea Bay was packed with folks watching out for the figures dwarfed by the waves. Brave, crazy, both? But what gives pause is not only the improbability of surfers riding life-threatening waves, but remembering Eddie, a man who perfectly embodied John 15:13, "Greater love hath no man than this, that he lay down his life for his friends." You can read a good summary of his story here.

Striking, shocking, willing sacrifice. And while I am sure that people like Eddie would disagree with those first two adjectives, I pray that we more often are struck by goodness, shocked by love, and inspired to magnify those qualities in our own lives.

"Eddie Would Go"....and so should we.

A Theme to Match the Times

2009-11-24T23:09:00.000-08:00

All of Abbie's recent changes merited a change on her site, so - voila! Welcome to Abbie's garden of miracles, complete with fluttering butterflies! I can't wait to see the what kind of flowers are going to bloom in the coming months.

We spent a beautiful long weekend out in the country, at a beachouse at Malekahana. Our yearly small group "camping" trip is always much anticipated, but the flavor is different each time. This year it was sweet-and-sour.

The beauty of the raging ocean, the lushness of the open land, and the freedom from all the demands on the homefront are uplifting and rejuvenating...sweet. Being away at a place where all the other kids are running, playing, building an awesome fort, and generally too busy to engage with Abbie...sour. I don't realize how different our life is, how different Abbie is, until we are surrounded by "normal" 24 hours a day. My heart just hurts for her, and I realize that as her brothers, friends and peers grow older, the bridge between them gets longer, and the distractions that keep them from crossing to be with her are multiplied. It just presses me to pray harder, plead more insistently, and believe more fervently for her restoration. I would be so encouraged if you would join me in this effort.

Abbie was more than ready to get back to therapy on Monday, hopeful that she would be able to walk down the hall. Unfortunately, she was encouraged in these hopes by an unwise mother. I did not know the therapy plan for the day, so I talked to her about walking all morning. Oops. The therapists wanted to focus on her arms instead. That will teach me! Despite her disappointment, Abbie worked hard, and was able to bring her head up when laying on her tummy and leaning on her elbows. She would lift and I would hold it until she wanted to lift it higher. I was very impressed, since this is not something we've been working on.

We're still trying to work out the nursing support at school, so we don't have a firm start date yet. But, we did receive another packet of homework, so Abbie is working on the same spelling and vocabulary words, and math problems as her soon-to-be classmates.

I may not get a chance to post again before Thursday, so let me say now how deeply grateful we are to each of you who choose to follow Abbie's journey, pray with and for us, and continue to believe that with God, all things are possible.

Have a blessed Thanksgiving!

Maddening Disappointment

2009-11-17T20:03:00.000-08:00

I truly believe that many of Abbie's recent advances are the fruit of her stubborn persistence over the course of many years. SHE would not quit, even when all those around her wilted at one time or another. So, it makes me smile when I can see that feisty streak in full bloom.

Monday's therapy session included the use of the Walkable, a harness device that would allow Abbie to stand for longer periods during our sit-to-stand practice. Unfortunately, Abbie heard it as "WALKable." When we first got her up, the harness was too high, so she was suspended in the air. Her little legs started going like mad...back and forth, back and forth. They did not stop until we had her feet back firmly on the ground.

We practiced sit-to-stand several times and she did well. When we were done, we got her out of the harness and laid her on the mat. She was so enraged that her face turned splotchy, which is rare. We thought maybe she was having an allergic reaction of some kind. Yea -- she's allergic to disappoinment, alright. When we figured out that she was just ticked off, we asked her why...and those little legs atarted going again. Up and down, against gravity, with her heavy tennis shoes and orthotics on...not easy to do for her. We had to spend time reassuring her that we are working through the process to get her walking again -- obviously not quickly enough for her liking!

I LOVE it that she knows so clearly what she wants, and is using her body to demonstrate her desire and readiness.

Other things are emerging as well. Maria did quite a bit of work with Abbie this morning. A little while after the session, Abbie sneezed several times, and then looked at Genevieve and said, "you, you, you, you" and grinned. We couldn't tell if she was playfully blaming Genevieve or asking for her help, but the clarity of the word was striking. Our little butterfly is coming out of her cocoon!

A short Mrs. Kravitz follow-up for Lost fans: It was quite the to-do on filming day last Tuesday. By the evening, they brought in enormous lights on cherry pickers and lit up the street. We were sitting on our front lawn having dinner, watching it all. Ray took that opportunity to remind me that if our hedge weren't dying a slow death (which I've been known to complain about), we wouldn't have had front row seats.

Then, one of the crew came to tell us that we would be in the shot if we stayed there, and invited us across the street for a close-up view. Show business is NOT glamorous, and I don't envy the actors who show up after the crew has been working for long days preparing...talk about pressure to perform!

Genevieve had taken Abbie to the mall, and walked right into the outdoor "set" on the way home. Unbeknownst to her, the corner in front of our house was lit up for a reason, and it wasn't just for her. She stopped there with Abbie to watch what was going on, which soon resulted in a voice coming over a bullhorn saying, "Excuse me, but if you continue to stand there, you are going to be very famous!" Genevieve then disappeared with Abbie into the shadows, on the way to our side door. A moment later, we heard the same voice say, "We can still see youuuuu."

If you are a hardcore Lost fan, be on the lookout for a scene with Ben Linus, where a girl comes to the door (I heard she plays his daughter??) and he talks about how he should have left a note on the door earlier. It seems as if they were shooting over his shoulder, so the (dying) hedge, stone wall, and wrought-iron fence you see are ours...woo-hoo, we are (almost) famous.

One last thing I feel pressed to share. Abbie was sick briefly last week (103 in the morning, 99 at night...that girl is strong!) As I was keeping watch through the night and into the morning, I picked up her Bible to read whatever opened up. 2 Kings 4 - a familiar story about the widow about to lose her sons to slavery. Elisha asked her what she had to repay the debts with, and she told him, "nothing but a little bit of oil." He instructed her to go to all her neighbors and ask to borrow empty jars, and "not just a few". Once they'd gathered the jars, she and her sons closed their door and began pouring.

Verse 5 caused me to stop cold. As long as there were empty jars, the oil kept flowing. But, when the widow asked her son for another jar, and he answered, "There is not a jar left" the oil stopped flowing.

What struck me in that moment is that as long as we offer God our prayers, his spirit will keep flowing. And, just like the widow, all of the jars are not in our own homes...often we must ask our neighbors for their jars, their prayers. I pray that we would become bold in asking for prayer, and in praying for others so that we would never have to say, "there is not a jar left - there is no more room for God's spirit to move."

Since I read that passage, the Lord has brought some exceptional people into my life that need a jar or two, or ten. Go check your cupboards for jars, and then watch to see who comes to your door.

Kindness from Every Corner

2009-11-09T23:08:00.000-08:00

I suppose when things are going well, the whole world looks sunny. That's sure how it's seemed around here lately. Every time I turn around, someone pleasantly surprises me with thoughtfulness.

I must admit to being a bit of a Mrs. Kravitz at the moment...curious and crabby rolled into one, because the TV show Lost is using a house across the street for filming tomorrow. In preparation, the "No Parking" signs appeared out of the blue on Saturday. I was miffed, not knowing the reason that we apparently would not be able to park in the same ZIP code as our home -- the barricades with notices were everywhere.

Yesterday we found out it was Lost, and watched a crew move the normal furnishings out of the house, and move the set furnishings in. As I type, all the semi-trucks are moving into place outside. I was concerned about how we would go anywhere with Abbie if we had to walk over a block to the van. It takes more than one trip to get all of her stuff into the van, along with her.

I decided to be the modern version of Mrs. Kravitz, who simply stews and doesn't open her big, cranky mouth. Good thing, because it allowed me to receive the gift of compassion. We were loading Abbie up for therapy today when one of the crew guys walked by. We chatted for a moment about Abbie's chair, and then he disappeared. He came back with a security guard and the location manager in tow. Devon, the location manager, told me -- "You just park your van right in front of your gate tomorrow...just disregard those signs. If anyone hassles you, come see me right away."

It means so much when people can see with their own eyes, and hearts, without explanation or request. I'm back to plain old me now....well, almost. There's enough Mrs. Kravitz left to ensure I'll be parked in my living room tomorrow, overlooking the goings-on across the street.

We then went to therapy - and had more excitement. We've been working with Abbie's arms intensely using a method Maria showed me last week and an oil I created. Pardon my lack of humility here, but we have achieved stunning results so far. Not only are we getting the arms to open up, but we are getting inward rotation, flexible wrists, and open hands. I was so happy to share this progress with our faithful therapists.

Then, Abbie got to do her favorite therapy exercise: sit-to-stand. She loves being in charge of her body, and "telling" us when she's ready to stand by starting the move herself. She looks amazing on her own two feet (with Lynette supporting her.) After a few iterations, we measured her knee flexion to compare to the measurements we'd taken before beginning. She broke her records for both knees today!! 75 degrees!

After bring Abbie home, I went to her school toting the medical paperwork we needed to complete the enrollment process. I must say again, the staff just blows me away. A packet was waiting there for me, but before I could open it, the principal came out and wanted to introduce me to the counselor, who was coordinating an upcoming field trip. You see, we don't know exactly when Abbie will be starting school, but even so, they have already planned to include Abbie in the field trip. They had a permission slip for me to fill out, and we made plans for us to just meet them at the site, since it's two blocks from our house. They are going SO far out of their way!

Once I opened the packet, I just blessed the name of our new Teacher-Angel, Mrs. T., the regular-ed 3rd grade teacher. She had included three baggies of seeds for Abbie to do the science experiment, as well as worksheets for the current language arts chapter. What thoughtfulness, and willingness to go the extra mile for a student who is not even technically hers yet.

Blessed, blessed, blessed. That is how I feel tonight!

But, in the midst of all our joy, there is a reality check and sorrow. One of the links on the left side of Abbie's blog says "Tori Schmanski." Tori was a beautiful, bright, dancing teenager when the car she was in ended up in water. She had the same kind of injury Abbie does. Tori passed away on November 7th, leaving behind a family who did everything, EVERYTHING they could to support, nurture and heal her. I can't say that events like this, sudden turns like this, don't haunt my heart, even on days as shiny as this one. Please, pray for the Schmanski family tonight.

All in the Right Timing

2009-11-02T20:16:00.000-08:00

As we've learned so many times along this way, delays and detours often lead to answers better than we could have hoped for in the beginning. Today, was verse number four of that song.

In the morning, we took Abbie to visit her potential classroom at Ali'iolani elementary. She was excited to see the other kids, meet the teachers and aides, and see the room. As I talked with Paul, the teacher, and looked at the layout of the room, I began to share Abbie's excitement.

Then came the screeching of mental brakes...I learned that all of the third-grade (as well as second-grade) classrooms are upstairs. There is no elevator. My hopes of her having time in a normal classroom evaporated, and I tried to hide my disappointment until I could really reason through it. We had a meeting scheduled with the whole IEP team later in the afternoon, so I figured we could talk about it then.

I sought counsel from a trusted special-needs mom, and talked a bit with Ray. Mostly, I felt like a melting Jack-o-lantern. My hopes had been burning so brightly, but now the candle was snuffed out and my smile began to turn down at the corners.

I arrived at the meeting with a knot in my stomach -- so torn because I truly like every member of the team at Ali'iolani, but I just didn't want to trap Abbie away from her peers. I am glad that Ray and I opened our ears more than our mouths! As we outlined our concerns, as well as Abbie's recent cognitive explosion, not only were we able to come to reasonable conclusions and create workable plans, but we got to know the team even better...and realized how profoundly blessed we are.

Just some examples:

* I showed them Abbie's curriculum when they visited the house, one of which is a homeschool curriculum. Not only have they already researched both in-depth, but they have already ordered them to use with Abbie, to ease her transition to school.

* The teacher showed me a consent form for videotaping in the classroom, and asked if I would strongly consider signing it, because when the therapists visit his kids, he tapes the sessions so he can make sure he is working with the kids correctly.

* During the meeting I asked the third-grade teacher present if at some point I could look at the third grade content to ensure Abbie would receive all of it. After the meeting she pulled out each of the texts and workbooks, walked me through each one, showed me where the class was now at, and gave me copies of blank worksheets they have already done.

* Abbie's teacher mentioned that he is very into technology, computers etc, and runs the Lego-robotics activities at the school. I told him that thrilled me, calling technology "Abbie's bridge to the world." He smiled and said, " You know, I am really thinking of her as more of a Stephen Hawking....she is so intelligent, we just have to find a way to get it out. I see her as more of a 'Resource' kid than an 'SMI' Kid, and I was a resource teacher for three years before moving to SMI, so I am very familiar with that."

I had to ask him to define those terms for me: SMI means something along the lines of "severe, multiple disabilities", while "Resource" means just needing some extra help or different adaptations to learn. He already sees her for who she is, and is very willing to welcome me into his classroom to help everyone get to know her better.

We are hoping that we can get all the necessary paperwork done to have Abbie start in 2 weeks or so. If you happen to have children at Ali'ioilani, you should be very proud of the staff and school. I have, at times, had severe reservations about the Dept. of Ed's ability to deal fairly with a girl like Abbie. I knew it would take just the right people to gain my trust...and today we found them!

Abbie also had a lot of fun on Saturday, dressing up as Alina, the butterfly princess from one of her beloved Barbie movies. We even decked out her chair with some butterflies, ribbons and streamers. I was so sick that I missed her morning therapy session, as well as her trip to the mall that evening....but, faithful Auntie Rae took this picture on her phone for me:

He Made All Things Beautiful

2009-10-28T14:56:00.000-07:00

This morning began with a group of very nice visitors -- the principal, special services coordinator and special ed teacher from Abbie's potential school, along with another woman from the district, came to see Abbie and what she's been up to lately. The Purple Board was front and center as they walked through the door.

Abbie was a little sleepy, but did do some math problems. I also showed them the book where Rae is carefully recording her progress. As I told them "She's changed since the meeting on September 15th", the depth of that understatement made me smile. They were very interested in all of her curriculum, and in her general needs. They are open to me going to class with her to train everyone, and help them get to know Abbie better -- which is huge relief for me. Her class already has 5 kids with wheelchairs, so she will feel right at home. But, we will talk more next week about mainstreaming time with regular ed. classes. Her intelligence and ability to learn rapidly is making me think more and more that she belongs with regular kids, learning the same material, and expressing her knowledge in adapted ways. I also think being around kids who walk, talk, interact and learn quickly will be motivating and enjoyable for Abbie. We'll see.. But, the bottom line for today's visit is that I was really encouraged by how kind, open, and interested the staff members were.

After the visit, Abbie began working on her Cubbie verses. Which, for most of you requires a little backstory. "Cubbies" is the preschool section of a church program called Awana that all our boys did. As Cubbies, the twins wore bright blue vests, and earned patches for the vests by memorizing verses.

Shortly before she was injured, we were cleaning out the garage. Abbie found her brothers' old vests, along with a "Cubbie Bear" backpack. She promptly donned both things and marched around the garage proclaiming that she would soon be a Cubbie. September wasn't too far away, so I was excited to think about her being a Cubbie, too.

That September is long gone now, along with that sassy two-year-old. However, as she began blossoming lately I thought, "I bet she can memorize verses!" Cubby verses are short and simple, so I figured that would be a good starting place. I asked my friend Sandra, an Awana leader, if she could get a book for Abbie.

Well, Sandra mentioned this to one of my favorite ladies at church, who wishes to remain unnamed, but is the Cubbie's leader. She said, "Oh - not only will I get a book for her, but also a Cubbie bear and the finger puppets that go along with the story. I was waiting for her that fall, and so looking forward to her being a Cubbie..."

I wept when Sandra told me that -- even now, we are not the only recalling the loss.

Abbie was THRILLED when I showed her the Cubby bear, and kept the finger puppets on for hours. Then, the work began. I introduced about six verses, to catch up to session three, where the group is now at. I told Rae all about it this morning, and we devised a way to test Abbie's memory. The deal is - if she memorizes the verse, she gets a sticker for her book, so she is VERY motivated.

I'd written the verse in entirety on an index card, and then each word separately on cards. We put the whole verse up and had her find the words in order. Then we took the verse card down, put some of the words up and had her fill in the blanks, which she easily did. Lastly, we took everything down, and Rae simply said, "I want to see if you've memorized it" without even detailing what "it" was.

Abbie correctly chose every word, in order, without missing once. She then picked out the Scripture reference from a choice of three. Here's what she "said"

"He made all things beautiful. Ecclesiastes 3:11"

Indeed!!

Abbie in the News

2009-10-24T01:16:00.000-07:00

I almost titled this post "We Have a Witness!!" because as part of the news story, a very kind photographer visited our house. Dennis Oda, from the Honolulu Star Bulletin spent an hour with us, capturing Abbie doing many different things, most notably, multiplication.

We seated her in her chair, set up a complex problem, and let her go. When she picked the right answer, I held it in front of her face and asked if that was her choice. She gave me audible confirmation, which elicted a "Wow" from Dennis. Finally! Rae and I were so relieved to have a third party witness what she can do....if only it had been on video.

The day before I'd spent almost an hour on the phone with Christine Donnelly, whose talent became obvious to me when I read the article that she produced from that interview. I think she made me sound much more coherent than I felt I was in the interview.

Here's the link:

Name in the News: Tiffany Vara

I owe Christine, Dennis and the Star-Bulletin a huge "Mahalo" for bringing generous and positive attention to brain injury recovery.

My interview with Christine also presented me with a challenge of opportunity. For the past several months I've been working diligently at preparing a company for launch. I felt I was about a week out from a soft opening the day I talked with her. When she told me the piece would run on Friday, and would include the web address, I said, "Well, it will be open Friday!"

I hung up the phone and wondered what I'd done, and if I could pull it off. A little sleep deprivation and lot of typing later...it's done! So, I would like to invite you to visit Matrisse, my wellness company built on everything that Miss Abbie, and many generous teachers have taught us through this journey.

Abbie and I have been keeping in our routine of reading Psalms in the morning. Sometimes, when I am certain no one is within earshot, I even sing them to her (making up my own off-tune melodies as I go). One that we read this week seemed penned just for her:

Psalm 20: 1,4-5

May the Lord answer you when you are in distress;
may the name of the God of Jacob protect you.
May He give you the desires of your heart
and make all your plans succeed.
We will shout for joy when you are victorious
and will lift up our banners in the name of our God.
May the Lord grant all of your requests.

I see Him answering and protecting her daily. I know some of the desires of her heart, and can guess at a few plans, but I think there are many that remain just between her and God. In these recent days, however, I sense God pulling back the curtain just a bit, and revealing the giggling girl full of anticipation and excitement who has been waiting to burst forth.

My spirit shouts even now, while at the same time I hear "You ain't seen nothin' yet!"
May God grant the mercy and grace for us to see her completely victorious.

Multiplication

2009-10-17T19:53:00.001-07:00

Saturday morning found Abbie at one of her favorite places - the University of Hawaii. No, despite all her recent gains, she's not going to college quite yet, but rather was reunited with her long-standing group of friends who also use devices to communicate.

Abbie was not able to participate in the Saturday morning clinics last year because of all her surgeries, so we are both excited to be part of it again. I really liked her student-therapist, and am looking forward to receiving help figuring out how to keep pushing, and opening doors for, Abbie.

In the parent conference at the end I was gleefully detailing Abbie's recent academic progress, which led to a lengthy discussion about how we give her more choices from which to select answers. The short answer is -- it's difficult right now, and will be changing.

The longer answer is, we are going ahead with planning for the hand/arm surgery. The meeting we had on Thurs. was a parent's dream. For all you special needs parents out there -- can you imagine having every single therapist you work with AND the orthopedic surgeon in the same room? There's a lot to figure out, as a team, to determine exactly what the procedure will look like, but at the end of it, she'll be spending four weeks in casts.

I feel guilty for the fact that I can so easily dismiss the arm casts as a concern -- but after two spica casts, they seem comparatively inconsequential. Not for Abbie, though. She did NOT look happy during the entire meeting. I keep reassuring her that she will not wake up with a huge leg cast on, and that it won't be nearly as painful (I am hoping!!). I continue to explain all the things that will be easier -- using communication devices,fingerpainting, drawing, having her nails painted...it doesn't seem to make a dent in her well-earned resistance. This just boils down to one of those times when as a Mommy I have to choose what is best for her even if she disagrees.

After working hard at UH for three hours, Abbie then came home and did over two more hours of school work. She would not quit. We hadn't planned on introducing multiplication for a week or so, but since she wanted more...we gave it to her.

After being with Abbie all morning, I was spending time with Ray and the boys while Rae played tutor. She introduced "groups of numbers", as in "two groups of two". Using this method she introduced the twos times table up through 6, which Abbie quickly picked up. For 7,8 and 9 she simply put up cards that said 2x7, etc. Abbie did not miss one.

At the end of their session, Rae beckoned me in to see the last problem Abbie had worked correctly:

2 x 5 + [picture of four dots] - 6 + 11 - 2 = 17, with choices of 17, 23, and 14.

I giggled like little girl getting a lollipop. But, Abbie wanted me to see for myself, so she insisted on one more.

We set up the following problem:

2 X 6 + [picture of five dots] - [picture of four dots] + 13 - 2

Rae and I had to signal each other behind Abbie's back to make sure WE had done the problem right, so that we could include the correct answer in her selections.

It took a while, but Abbie eventually chose 24 (and, so you don't have to do the problem...she was right.) I wanted to confirm it was her choice, so I got the 24 card from the board, and held it in front of her and asked, "Is this your choice?" With more than a hint of indignation, she used her voice to make sure I knew that's the one she wanted...I had to laugh.

When I told Matt a few days ago that Abbie understood subtraction, and that we were planning to show her multiplication next week, he added "and the week after that...astrophysics." Put another way, her speech therapist said, "I want to improve her communication access so that we can find her upper limit...because I am not seeing it yet." I went looking for it today....I stepped outside, looked up at a clear, blue sky and said, "Yep, there it is."

God is good.

More Math

2009-10-14T21:12:00.000-07:00

We have decided to keep a composition book to better track what Abbie does each day during "school." Since she had been excelling with addition, we thought it was time to introduce subtraction.

Rae started out the same way, asking, "If you have three circles and I take away two circles, how many do you have left?" Abbie selected "1" as her answer, and thus concluded the entirety of instruction about subtraction.

With that simple little lesson, Abbie went on to correctly answer:

[picture of three circles]-[picture of two circles] - during this problem she was again asked "if you have three and I take away two, how many do you have?

5 - [picture of 3 circles]

9-5= [picture of 4 circles] -- the only thing said to Abbie was "Find me the answer"

Then, we decided to challenge her, and mix it up a little bit.

9-5+3=7
10-2+[picture of three dots]=11
10+12-[picture of four dots]=18 -- on this one Abbie needed to hear what many children working mixed problems hear, "Pay careful attention to the signs"
10-3+24=31
12-3+4-10=3

Wowza!!

So, if that's what she can do on Day One of subtraction...look out for multiplication and division coming right around the corner!

We'll be having a meeting tomorrow with her orthopedic surgeon and all of her therapists to discuss a possible hand/arm surgery. Her thumbs just love to lay on her palm, which makes it hard for her to use a joystick, and other communication aids. Her arms rotate out, which again, make access to communication devices more difficult. Dr. B. can remedy both of these situations through surgery. We will be talking as a team tomorrow to determine the what/how/when of the procedures.
Although I'm never thrilled about surgery, when I see how her quality of life and ability to do things has improved as a result of the major hip/leg surgery, I project those results onto her arms and hands and imagine what she'll be able to do -- especially with communication. Please pray for wisdom in this area.

Abbie was very excited to find out today that her faithful friend Cassidy will be welcoming home a little sister from China in December, after a 3.5 year wait! We can't wait to meet her!!

And, I must send out hugs and prayers to my extended family in Illinois. My Auntie Lavonne passed away last night, leaving a husband, eight children and many grandchildren. I wish I could be there with you as you say "farewell" and celebrate the thought that her suffering is over and she is in the presence of God in a perfect body!

Riding the Same Ol' Train

2009-10-11T00:18:00.000-07:00

If you've read the recent purple board updates, you know we've been thrilled with Abbie's academic progress lately. Over the years I have learned the lesson, though, of not taking what she is currently doing, or the speed at which she is progressing, and projecting that into the future. You have to celebrate the victories for what they are in the present, not as precursors of future gains. Most of this past week reminded us once again, that we are riding the Brain Injury Train, and let me tell you, it is certainly not an Express!

Abbie didn't have a lot of interest in school work last Saturday and was giving random answers just to get through it (as many kids often do.) We thought perhaps she was distracted by excitement over that night's plans to attend the symphony. You should have seen her....all dressed up and riding in the van late in the evening, she was all grins - knowing she looked beautiful AND was up past her bedtime. The symphony was a wonderful experience for her, since we do many of her exercise sessions to classical music. Abbie was so excited to hear real violins, cellos, flutes and horns! It was an especially appropriate performance for Abbie because one of the actors from Lost narrated The Story of Babar (delightfully, I might add), with musical accompaniment and enhancement. Although she konked out at intermission, Abbie had a memorable experience. Once again, it was made possible by the generosity of caring people! A woman that has never even met Abbie, but hears about her from Genevieve, purchased tickets for our entire family. Since the boys had plans, Genevieve's family came with us. Amazing. At eight, having already been to the ballet and symphony, Abbie is becoming quite the cultured girl.

Her disinterest in school, and most everything else continued through the week, and she just seemed very far away. Those kind of days are difficult for me, and when they pile up I begin to wonder if the good days were just a mirage I dreamed up

I started focusing on some specific interventions on Thursday, and she had a pretty good day in PT and Speech on Friday. Even better, she was smiling all day long. And then today, I arrived home from a very long day today to find this note from her nurse, Rae. I love it when someone writes an update for me!!

"Hi Tiffany-

Since we didn't get much of a chance to talk today, just wanted to fill you in on how smart our Abbie really is. She is using her eyes, and working hard, as usual. When she has a good day, she really has a good day.

She was able to look at the purple board and do the following math problems by herself. I didn't say anything to her about what the numbers were or anything, except asking her to find me the answer. She did 9+8=17, 9+8+10=27, 23+2+5=30. I can't believe how far she has come!! I'm so so proud of her, and I can't imagine what you must be feeling.

OK, so if you think that was amazing, she just did 23+12=35, with choices of 35, 31, and 50. Correct!! 23+27=50, with choices of 35, 31, and 50. Correct!! 23+27+12=62, with choices of 62, 30 and 75. Correct!! There is no stopping this girl. She is on her way to college! Unbelievable. And, all by herself without any help from me at all! I honestly did not say anything to her at all. I am speechless!!

23+31+[picture of four dots] = 58 Correct!!
23+31+30 +[picture of three dots] = 87 Correct!!

Now I'm puzzled as to how she is figuring out the answers! She can't be counting because those numbers are way too big. All I can say is WOW!! AMAZING!!

23+31+30+[picture of three dots]+26 = 113 CORRECT!

I wish you were here to see this because you probably think I am crazy -- but she really is adding!

And the problem of the day:
31+11+25+[picture of three dots]+24= 94, with choices of 110, 94, and 86. CORRECT!

I tried to call you to let you know how she was doing and to put a smile on your face...

Abbie is unbelievable and is going to continue to thrive if we push her!"

I was stunned when I looked at the purple board, and saw that last problem there. I have not one clue how she can accurately add up numbers in a problem that spreads over two rows of flashcards. When her brothers saw the problem they said, "Whoa...I would need a pencil and some time to get that right!" They were then silent for a moment, as the depth of Abbie's intellect finally sunk in.

"Mom, I think she is brain child," said RJ without a trace of irony in his voice. "I think maybe her brain injury worked backward. Instead of killing cells, it created a whole bunch of new ones." His precious still-childlike logic made me smile.

Matt added a very observant, and I think, accurate, assessment. "I think that since she can't move her body, she is able to focus her brain very, very well."

The clickety-clack of the Brain Injury Train wheels always sings out the same song: "Who really know? Who really knows? Who really knows"

No one -- not about why the frustrating, heartbreaking confusing things happen, and not about why the incredible, hopeful, confusing things happen.

We just have to keep on riding, taking the valleys with the hilltops, ever trusting the Conductor, and celebrating when His grace is shown in such amazing ways.

Authorizations and Appointments

2009-10-02T02:11:00.000-07:00

This has been a week when we've truly realized that having a special needs child is a full-time job. I feel like I've been pinging from meeting to appointment to meeting to phone call.

On Monday morning we were joined at our PT/OT session by the medical director of the managed care company that authorizes Abbie's therapies, along with a care coordinator. I was very nervous about this visit, and the meeting that would follow therapy, because I worried that Abbie's access to therapy would be cut off. After all, she is over five years out from her injury, and I didn't know what kind of progress they would be looking for to justify continued therapy.

I was encouraged to find out that the medical director is a physiatrist, and had a long history of working with brain-injured patients. She was very observant, and gave Abbie time to respond to requests. Abbie did her part by having a very "on" day, thank goodness. She did well in the sit-to-stand practice, and then she activated the power chair when was she asked to do so. All the while, though, during her brilliant performance, I was dreading the post-therapy meeting.

It turned out that all the chatting we'd been doing during the therapy sufficed as the meeting. As the session drew to a close the Dr. turned to me and said, "So what I am thinking is one OT/PT session and one PT/Speech session per week, and then we'll reevaluate in three months because she is changing so quickly." I almost cried.

I told her how very grateful I was to not have her put the "fill in the blank" (e.g. "one year out, "two years out") limit on Abbie's recovery. She answered "Oh no..not with an injury this diffuse in a child, you just never know, you never can tell. Let's just she what she does."

We got home just in time to prepare for the next meeting, with the folks who authorize Abbie's nursing hours. Back in July we were told that her hours would be cut from 30 to 2-4 per week. We were trying to prepare ourselves for this axe to drop on Monday afternoon. We were told that while cuts are on the way, they cannot be implemented until a new policy is written, which could be December or January. So, we have a reprieve for now. After two hours in that meeting, my head was spinning, but I was relieved to be through it.

Yesterday morning we received a call from our neighborhood school, who determined they could not care for Abbie, to tell us what school had been selected for her, Ali'iolani Elementary.

We've set up an appointment for their staff to meet Abbie, and are trying to set one for Ray and I to visit the school. We will also have to have more IEP meetings, especially since Abbie has now met many of the goals we set for her just last month.

Yesterday afternoon I took Abbie to see our fantastic orthopedic surgeon, Dr. B. We started out with Xrays of her spine, hips and femurs, which were fine. We discussed the timing of taking out the hardware in her hips and femurs. I was hoping it wasn't a strict one-year timeline, because that would mean an OR trip next month. Nope - no time pressure on that front, we could wait up to a year.

But, there was discussion about the possibility of a completely surgery. Abbie's thumbs are contracted are pretty glued to the palm of her hands. In addition, her forearms always roll to the outside. Dr. B. can do a procedure to release those stubborn thumbs, and can reroute tendons to rotate her arms to a normal position. I wouldn't consider this surgery, save for the fact that there is now a huge upside. Abbie's communication and expression has been exploding lately, and with open thumbs and properly-rotated arms, her ability to access communication devices (and the power chair) would be greatly increased.

I was thinking about pushing this procedure off quite a while when Dr. B. made a very compelling point, "Remember that her hand is her communication tool. So, think carefully about how far down this track of new communication devices and methods you want to let her progress before you knock her back with a surgery and then have to adapt to new positioning." Hmmmmm, he is so right. We are going to schedule a meeting with him and all of Abbie's therapists so we can decide what (and when) is best. Please pray for wisdom for us in this matter.

Abbie continues to change and progress in amazing ways. Today, as we did our morning "dancing" session, a new, very foreign thought came to my mind. As she shows us how quickly she learns, how ardent a learner she is, and as college for Abbie has crept into my mind, that lead to "what then?" Today, I imagined her life as an adult, and for the first time since the day she was injured I considered that Abbie may live apart from us as an adult. Perhaps not independently, but "on her own". I didn't know how to feel about that at first, as I've grown to assume she'll be my forever daughter, always with me. I now suspect she has much bigger plans than that!

The Purple Board Part II

2009-09-26T17:20:00.000-07:00

Abbie has astounded us today to such a degree that I promised her I would sit down and tell you all about it right away. That Purple Board seems to be the tool she has been waiting for, as we are finding intelligence beyond our dreams.

Ray and I got home from Matt's cross-country meet and RJ's football game today to find Abbie "doing school". Today, Abbie was shown the words "Christmas", "Thanksgiving" and "Halloween" once, along with picture cards that depicted each day. After being exposed to them once, she knew them! Not only that, but she was able to pick them correctly out of three choices.

Until now we have only been giving Abbie two choices, one on the right and one on the left. Her nurse, Rae, wanted to challenge her, so gave her a third option that was her "up" choice, requiring her to lift her arm to select it.

She built sentences that said things like "Christmas is on December 25", with her responsibility being to choose "Christmas", "December" and "25". The stunning thing about that particular sentence is that we hadn't really taught Abbie December yet, as we have been focusing only August, September, and October. Somehow she either read it or deduced the right answer. She also chose 25 promptly when her other choices were 27 and 31, so it wasn't an obvious choice.

Then, Rae decided it was time for math. I felt confident Abbie understood the concept of addition, but we haven't really worked on it. After ten minutes Rae came to get me to say, "1+1, 1+2, 1+3, and 1+4...so easy for her".

Abbie was continuing to choose from three options, which required her to use her body very precisely. Hmmmm, we wondered...how much more math could she do. This picture answers that question:

It took Abbie less than ten seconds to look at this problem and select the right answer. She also correctly answered 2+5. She is so incredibly happy when she is at work, and able to exhibit her intelligence. Her reading, and more fundamentally, her vision, are blossoming at rates that takes our breath away.

OK....I was just finishing the sentence above when Rae came in and said, "I think you
ought to leave the camera with me." Check out the problem below!

You can see how the selections are set up on the left and right, and the "up" position. Abbie correctly chose 9 as her answer. The sensation of pleasant shock is making my hands tingle as I type. There are NO limits for her!

You would think, with all of this future-altering progress, that I would be walking on air. The frustrating thing about sadness and grief is that they are so illogical, coming in waves at times that make no sense. Perhaps because Chase's departure is making me realize my days of hands-on mothering truly are numbered, I have just been very down these past few days. I am not a woman given to fancy jewelry (I don't feel as bad with 11 single earrings if they are cheap), but I realized, when we went out for the last family dinner before Chase's departure, that my children are my jewels. Being seated with four sons around me made my blessings so extravagantly obvious. I am a very rich woman indeed, in the things that truly matter.

Still wallowing in the blues, I answered the door this afternoon for the pizza man, bringing lunch for our inpromtu gathering of teenage boys. Many of them were outside, which caused him to ask how many kids we have. When I answered "five", he smiled and said, "Wow! I used to have a son but he died three years ago."

Now, this particular pizza man knows us well, and I tip him generously because I am always touched by the sight of this slight, stooped over old man slinging pizzas up to our door. I don't know what prompted him to share the story of his son, Martin, who just went to sleep one day and didn't wake up, due to an undiagnosed heart problem.
His pride, sadness, confusion, and longing mixed together in his eyes and overcame his Vietnamese accent. Grief is universal. As we finally parted ways, I felt deeply in my humbled heart, "LOOK at what you have, not what you don't. All your children woke up this morning." The fog began to lift.

Ten minutes later, Rae came to tell me Abbie was doing math.

I think the lesson is, we all have a story. When you feel lead to share yours, please do! I didn't mention anything to Hiep about Abbie, and he probably has no clue how deeply he ministered to me in his brokenness. With God, tears are never wasted.

The Purple Board

2009-09-23T14:12:00.000-07:00

Some classrooms have blackboards, some have whiteboards, and these days, some even have Smartboards. But, not Abbie's classroom..oh, no, she has a Purple Board!

OK, I admit, it wasn't necessarily by design, but when I went to buy some black flannel to affix her word cards to, there wasn't any available. There was, however, a big fat bolt of bright purple! Easy decision, and beautiful, Abbie-pleasing results.

Some time ago her therapists built a PVC-pipe "gym" for Abbie, from which we could hang things for her to kick at or bat with her hands. As she began to flourish in reading, we decided to put the gym to academic use. Simply laying a piece of flannel over the top bar gave us the now-beloved Purple Board.

And, here's what she's been up to this morning:

In each of the following pictures Abbie had to choose three of the words herself in order to build the sentence. In this one she had to correctly choose the day of the week, the month, and the date.

In this one she had to choose the words "hot" and "sunny", and choose the right picture to depict "sunny"

This one is my favorite, because she had to work extra hard.

In this last one, Rae told her that she was looking for the word "swimming", but then showed her the words "swimming" and "raining" without telling her what they were. Abbie quickly (and correctly) chose "swimming." I was stunned and challenged. We thought these sentence building exercises would be challenging for her. Not so much. So, if she can already read "swimming" without explicitly being taught that word...where do we go from here? I LOVE problems like that!

This past weekend brought the first big shift in our family, as we took Chase to college at Santa Clara. It was a profound "full circle" experience for me, because Chase was born during Christmas break of my senior year at Santa Clara.

After I'd dropped him and his stuff off at the dorm, I circled the campus to find a parking spot. Walking back towards his dorm, I approached the mission church as the first rays of pink sunlight were finding it. Ushered down the driveway by myriad rosebushes, the long arc of God's faithfulness struck awe in my heart.

Having Chase so young was a scary thing. Youthful naivete and a good bit of bravado made it possible for me to walk through campus ignoring the whispers, and to sit sideways in those desk-chair combos that are completely unfriendly to pregnant women! Although I didn't know Him well then, God's grace attended my every step...not just though graduation (on time, with my class), but through each day of motherhood since.

Standing in the shadow of the large cross that sits before the mission, the "rightness" of my decision back then was utterly confirmed. Oh, I have always known it...from the first flickering ultrasound images, to counting toes, lost teeth and As on the report card. But, for the first time I felt like I have completed an assignment, and received a complete affirmation from the Lord. God's faithfulness, and the answers to prayers may best be measured not in moments, but in years.

Being Chase's mom has taught me much about how I journey through life as Abbie's. When folks try to measure Abbie's potential in a snap-shot, I will smile and recall the revelation of that long arc, looking forward to the day, in the shadow of the cross, when I will sense once again, "Well done....", and rejoice in the joyful outcomes of the decisions we are making today. We choose hope, faith, and love, and we trust God for the end of the story.

Right before we said goodbye, on the steps of Mission Santa Clara

Among some of the many roses in the Mission Gardens at Santa Clara

Chase and I together at the foot of the cross.

War and Peace

2009-09-04T01:37:00.000-07:00

I've been too busy to write, and am now faced with figuring out how to relate all that has been happening without keeping you here 'til Christmas. Tolstoy I am not, but you may think I'm his niece if you read this whole update in one sitting!

I'll start with what I am sure Abbie would say is the most important:

PART I: ABBIE'S EIGHTH BIRTHDAY:

Her day, August 23rd, did not slip by unnoticed, especially by her. She wore a shirt proclaiming "Birthday Girl" to church, but we left the tiara at home because it pinched her head. I told her that was because she's getting so smart. Our pool is undergoing some renovation, so we decided to wait to have the official party until that project is complete. The pool is Abbie's "Happy Place", ironically enough, so she wants to have her friends over for a pool party.

After church we took her down to the Pacific Club so she could swim with her Daddy. I thought her face would freeze with that dimple in place (not that I would mind one bit), because she never stopped smiling. We enjoyed a nice dinner, and them came home to savor the wonderful birthday cake that Auntie Rae had made. Perfect for Abbie with lots of whipped cream and chocolate pudding, it wasn't a hard sell to her brothers either!

She swam with me a little bit too, but it's not quite as fun as with Daddy!

She is so very proud to be eight! We've used this to our advantage in therapy recently. Lisa, her speech therapist, had her "build" a birthday cake by making her pick out the pieces in the right order. She then sent it home for us to decorate.

Well, Abbie has been blossoming so much in her reading lately (more on that later), that we decided she could "write" on her cake, instead of just putting stickers on it. So the cake you see below, every it of it, was built through Abbie's hard work. You see, not only did she have to identify the right color and size for the layers, but she had to correctly identify every single letter on that cake. We would give her a choice between two letters, and she never missed...not once! This is one birthday cake that is going to be framed and hung on the wall!

PART II: Scary Times and Sirens

Last Sunday, Kapiolani was having a huge event at the zoo to celebrate 100 years of caring for children and women. After church we quickly changed Abbie, slathered her in sunscreen and got her in the stroller, ready to go. Moments later, as we were set to walk out the door, I noticed that her lips were purple.

"That's odd," I thought. So, I checked her with the pulse-ox. It showed 81. "No way!" So, I grabbed our back-up fingertip pulse-ox to check -- it said 79.

We quickly got her onto the massage table and watched her cheeks and eyes puff up and turn purple, and her trunk and arms get splotchy. She was really struggling to breath, and even 4 liters of oxygen wasn't helping her. As it became obvious she was having an allergic reaction to the sunscreen, I ran and got some Benadryl (thank goodness for G-tubes!)

After 10 minutes we still couldn't stabilize her breathing, so I had to call 911. Pretty surreal, as we have never had to do that in all these years since Abbie's injury.

The firefighters arrived first and put her on 15 liters with a non-rebreathing mask. This at least got her sats to 90, but she was still taking over 60 breaths a minute, and each one was a struggle. Once the paramedics arrived, we decided to go the ER, because I could not support that level of oxygen need at home.

At the ER they gave her an injection of epinephrine and a breathing treatment, after which she was very vocal. As we waited and watched, the doc said he was still deciding whether to give her an IV. Abbie was looking away as he said this, but the second she heard "IV" she turned to look straight at him, as if to say, "I don't think so."

We were able to come home after a few hours because we have oxygen and a nebulizer at home. I was thankful, and sure that all the drama was over. Turns out I was wrong. It's now five days later and we are still dealing with flare-ups. Just this morning her sats went into the 70s, and I had to put her on 5 liters of air, give a nebulizer and Benadryl, and try every trick I know to get her to breath and cough.

I am always so careful about what goes into and onto her body. Sunday was a total lapse in judgement, in the rush to get to the zoo. I simply grabbed a "Baby" sunscreen we had in the house, because it said "hypoallergenic", and I thought that if it was safe for a baby's skin, it would be OK for Abbie. Dumb, dumb, dumb.

So, all I can say is DO NOT USE Banana Boat Baby Tear Free Sunscreen SPF 50, and toss it out if you have some. After Abbie's severe reaction, I researched all the ingredients and was completely amazed that this concoction can be labeled safe for babies.

PART III: Smarty-Pants

We are blessed with some very exceptional nurses. After hanging out with Abbie for a while, they seem to morph into nurse/therapist/teachers. One of them in particular, Rae, is always thinking about how to open new doors for Abbie academically, and coming up with new ideas to try. Lately, she has been focusing on Abbie's reading, and over the past two weeks we have both been taken by surprise at Abbie's response.

Because Abbie is getting more movement in her arms, she is now able to move her hand between two choices on a little lapdesk, which allows her much more freedom of expression, and quicker choice making, than just using her one little hand-held switch.

One Saturday Rae confirmed that Abbie knows all the color, shape, and number words, as well as many of her reading vocabulary words. Still amazed a week later, she wanted to find some way to show that Abbie was actually reading and not guessing. So, she wrote the word "rainbow" on a card and showed it to her a few times. She also made cards with a picture of a rainbow on one and a flower on the other.

She then showed Abbie the word "rainbow" without telling her what it was, and said, "This is what you are looking for." Then, she showed her the two pictures and said, "This one will be on your left, and this one will be on your right."

Abbie was able to use her arm to find the rainbow picture. So, in one activity she had accomplished many things: reading "rainbow", connecting it mentally to the picture, knowing "right" and "left", remembering which side the rainbow picture was placed on, and then moving her body to find it.

Rae and I were jumping for joy - literally, I am glad there is not a video. It is just so glaringly obvious that there is great intellect inside that little body that is beginning to cooperate! My thought that evening was, "This little girl is going to grow up and go to college!"

When I shared that "crazy" thought with her speech therapist, Lisa, a few days later, she looked straight at me and said, "Well, of course she is. She's not going to let you hold her back, you know!"

PART IV: School

We have been doing many wonderful things in our homeschooling, as you have just read. But, we are beginning the IEP again to see if we can find a safe, appropriate place for Abbie to attend school part-time. She very much wants to go, but we have to make sure that everything is in place to support her medically, physically, academically, socially and emotionally.

Since this process is going to take time, we are going to keep pushing ahead with homeschooling, adding some new things we just found out about. One is "Precision Academics", which Abbie's neurodevelopmentalist showed us yesterday. This program is all online, and the workbooks are easily adaptable for what Abbie needs. I am very excited to have a little more academic structure, and can't wait to see what Abbie will surprise us with next.

PART V: Assignment: Dance

As I mentioned, we saw Abbie's neurodevelopmentalist, Linda Kane, for the first time in 18 months yesterday. During the drive out there, I was psyching myself up to find a way to do the exercises with Abbie that Linda would be assigning us. Many of them take four people to do, and are difficult for Abbie to physically accomplish. But, if we were going to commit the time and money to "doing program" again, we were going to do all of it faithfully....somehow.

Well, God heard my prayer of desperation before I even recognized I was praying one. In the interim since we last saw Linda, she has learned a new modality of therapy for children with high spasticity, like Abbie. It turns out that rather than the aggressive and difficult exercises, these kids respond beautifully to "Rhythmic Movement", which is just gentle, rhythmic rocking motions on various parts of the body.

As Linda showed me "Movement 1", which is just laying Abbie on her back, holding her ankles, and rocking her legs up toward her trunk, I thought, "Hey...THIS, I can do" All by myself, where ever we find ourselves during the day, I can do this!

The rest of the movements were just as simple, and, even better, enjoyable for Abbie. As she lay on her tummy, and I gently rocked her hips, she just melted. Linda told me we need to spend as much time each day doing this. I almost laughed, and told Abbie, "Our job now is to dance together all day....can you believe it???"

Ray and I were talking late in the evening, and the enormity of this appointment was finally sinking in. For almost five years I've carried a daily burden about what we need to be doing with Abbie's body, about how much we are not doing, and how to figure out a way to make it happen. I didn't realize how heavy that burden was until it was lifted, and replaced with an invitation to dance.

Linda also got to watch Abbie learn a new reading word, "Thursday", in about 30 seconds. So, our new goal is for Abbie to read and communicate in sentences. This goal dovetails nicely with the progress in speech therapy, which is leading to new communication devices and strategies. Again, I say, "This girl is going to college!"

PART VI: Where the Rest of Summer Went

During this lapse in posting, we took a family vacation to the Cascade mountains in Washington state. As usual, Abbie traveled very well, and the new wheelchair was as much of a blessing as we thought it would be. The day we were to fly dawned with Kyle still in the hospital, being treated for complications of mono. He was released an hour before we left for the airport.

So, our normal parade through the airport was enhanced this time by having two wheelchairs instead of one...it was quite grand! Kyle spent the first few days of vacation in bed, after which he could finally eat and drink again. After that he made up for lost time, and we became concerned that he might accidentally eat one of his hands in the rush to stuff as much food into his mouth as quickly as humanly possible! He continues to recover, and unfortunately was not cleared to play water polo this fall. We are happy enough, though, that he was healthy enough to start school on Aug. 11 and has not missed a day yet.

Now we're full-swing in the school year hub-bub: RJ's football, Matt's cross-country, band instruments, homework and looking forward to taking Chase to college in a couple weeks.

Matt and RJ's first day of 7th grade. I am finding that boys don't care nearly as much about what they wear the first day of school....obviously!

Most of all, I am finding that each day is bursting at the seams with joy! Abbie awakes every morning with smiles, and those early hours with her are the sweetest part of my day. Please pray for her health, though, as these flare-ups from the allergic reaction are very challenging, happen quickly, and are limiting for her.

God is good!

Better Than A Dream

2009-08-24T20:43:00.001-07:00

I am overdue in writing about a magical day, but I didn't want to let the story slip by without being told.

A week ago Sunday (8/16), Abbie and I, along with her nurse Leila, met my friend Nina at the ballet!

Ballet Hawaii has a 3-week summer intensive, combining local dancers with professionals from the mainland. At the end of that whirlwind 3 weeks, they stage a complete production, with this summer's offering being Peter Pan. Could be there be a more perfect first-time ballet for an adventurous girl like Abbie?

The ushers and fellow patrons were so kind, and we were easily seated and ready, complete with the light-up Tinkerbell wand Nina gave Abbie. I could not believe that Abbie was finally going to see real ballerinas, after wearing out so many DVDs watching them.

As the curtain rose to reveal an enormous, beautifully decorated stage I think the joy temporarily propelled me out of my body, to observe the whole thing from above. After a while, I noticed that Abbie, being seated at the end of the aisle, wasn't getting the best view. So, I moved her onto my lap and her experience really began.

Magical...truly, truly magical. I wanted to bottle those moments to keep forever. We were at the ballet, listening to lush, enveloping music, watching lithe, joyful bodies, and merry, rascally Lost Boys. It was a moment I envisioned the night Abbie was born -- a vision that had drifted away to the point of disintegration until Nina invited us to join her. How thankful I am for precious friends who restore lost hopes.

I was reminded that, although others may view her as limited, Abbie has a big life. During intermission, folks were filing past to go outside for refreshments. As one particular group of girls stepped by, one said, "Oh, hi Abbie!" I still don't know who she was, but my heart leapt that Abbie had a friend there. I was also reminded that we are never alone, even when we feel lonely. A gentleman approached just before the show started to let me know that he and his wife still pray for Abbie daily. Wow...how do you thank someone for that??

As Wendy and her brothers flew back through the bedroom window, I whispered in Abbie's ear, "They're HOME!" She grinned so broadly that Nina saw her dimples in the dark. Even adventurous girls realize that home is a very nice place to be!

I was still trying to process the whole event as we strolled outside to the stage door. Nina's good friend is the artistic director of the ballet, and we hoped that she would facilitate Abbie actually meeting some of the ballerinas. Since we were among the last to leave the theater there was already quite a throng gathered outside the door. But, there was Pam -- even amidst of the closing show hullabaloo -- outside looking for Abbie. As soon as she saw us she parted the crowd to usher Abbie inside. We met several of the Lost Boys, some of the fairies, and the hilarious, scene-stealing crocodile. And then, Pam escorted us onto the stage...

There she was, on the big stage, looking out at all those seats -- my amazing, brave ballerina. I could not stop the tears then.

A keepsake day, to be sure. And, a reminder that though the route of our dreams may change, they do not have to die.

Bless you, Nina, for making one of those dreams come true!

Another New Car

2009-07-27T00:39:00.000-07:00

After the thrilling surprise of the power chair on Monday, I thought that would assuredly top the list of This Week's Highlights. Well, perhaps it's still tied for the lead, but there weren't any dull moments this week.

On Friday morning I awoke looking forward to digging into our last big box project, hoping to finally reclaim our living room from the Public Storage brown cardboard decor we had going on. Kyle awoke, with a terribly swollen throat, and changed those plans.

After seeing the doctor, we went to the lab for bloodwork. I waited just outside the lab door, by the elevator. I smiled when I saw him coming, looking rather pale. He said, "Oh, Mom, I don't feel so good" and gave me a hug. I love it when my big boys do that. Then, it became a really big hug. "Oh...he is so sweet!!!" I thought. Whoops...wait a minute, he wasn't showing me affection, he was passing out in my arms. Cold. I couldn't hold him up, but managed to break his fall to the floor. So, there he lay, completely out, right in front of the elevators. The poor folks trying to get off were quite shocked when the doors opened.

The hospital's rapid response team arrived very quickly, just as Kyle began to come around. A wheelchair ride to the ER, a wide-open IV of fluids and some steroids had Kyle feeling much better by the time we got the diagnosis: mononucleosis. Ugh. His pediatrician had suspected this, and warned that if he did have it she wouldn't clear him to play contact sports for three months, because of swelling in his spleen. There goes this year's water polo season!

He's been utterly miserable and in great pain. His throat is so swollen that eating solids is completely out, while even drinking is difficult. We would so appreciate your prayers for his comfort and healing!

On the upside, we met another of the cadre of wheelchair technician angels yesterday. Pete brought the new stroller that we had ordered and anxiously anticipated. During months of googling "reclining wheelchair" I found an amazing chair that has all the features I wanted. But there was more...it has an innovative design that may help Abbie's posture, muscle tone, and ability to work with her hands.

Here's our new "Thevo Twist"

One special feature is has is flexible lateral supports -- those black things sticking out midway up her seat. In normal wheelchairs that is exactly what they do...stick straight out to help keep the child sitting straight. But, often they end up getting is the way of the arms, and not being a good fit. These ones, while retaining some rigidity, wrap around Abbie's midsection and buckle together. What a difference this has made in keeping her back straight! And, after 5 years we finally have a head rest that works and keeps her head aligned with her body -- woo-hoo!

It reclines all the way back, and has already proven a GREAT place to change Abbie without having to transfer her. This means we can always keep her clean and comfortable no matter where we are at; important now that she has outgrown the changing stations in public restrooms.

This is what is so different about it:

The back of the chair is not solid, but is constructed of rows of these sensors. When Abbie's body moves, these respond, giving her input that helps her know where her body is in space. This specific type of input has always been very helpful to Abbie, and leads to her sitting up straighter, having more head control, and relaxing and moving more fluidly. The suspension on the stroller is also adjustable. With the pull of a pin, the shock system is locked, so that the Abbie will feel every bump and jiggle...leading to even more sensory input for her. I had high hopes for this stroller, and now, actually having it here with Abbie, it has far exceeded them.

We purchased a new car seat from the same company. It is very adjustable and supportive, but the coolest part is that it has an iPod plug at at the bottom of the seat that feeds to speakers situated within the head rest. I plugged my iPod into the seat and let Abbie listen. This is her response:

We purchased both of these items from a company called "Exomotion" www.exomotion.com. They are the only American importer for these, produced by Thomashilfen in Germany. Exomotion is located in Seattle, and I cannot say enough about their terrific customer service. If you have a child who may be in need of a new chair in the near future, I urge you to check out what they have. Getting this chair has been life-changing, and I know other wheelchair families will recognize that statement is not hyperbole.

As this week comes to a close, I just feel very, very blessed. I pray as you reflect on your life, that same sense comes over you!

Powering Up

2009-07-21T02:11:00.000-07:00

A lot has happened since the last post. Our "moving without moving" project has come quite a long way, as every closet, drawer, and shelf have been emptied and sorted through, while every piece of furniture we own has been moved to make way for the painters and carpeters. In the midst of this we had a slight complication, when a minor cut on Ray's finger became infected with MRSA and his hand swelled up like a softball. Part of the effort to keep him out of the hospital required him to constantly elevate that hand. This prevented him from helping much with the house projects, but, even worse, made him the victim of 12-year-old humor.

You know the kind: slightly funny, mostly annoying, relentless. "Dad, do you have a question?" "Excuse me sir, can I help with something?" Poor Dad just wanted to bring his hand down, if for no other reason than to cover the twins' mouths! They couldn't just say it once, or even three times. Oh no, they were certain it would finally make us laugh at repetition number fifty!

Ray did manage to avoid the hospital so that we could meet Chase in Santa Clara on Thursday for his college orientation. I have not been on that campus since I graduated. It was nice then, it is beautiful now! I wanted to ask whether they accept moms for a second go 'round. It was a blessed time as we learned where, how, and with whom Chase will be spending the next four years growing into a godly man.

We arrived home on Saturday to find our anxiously awaiting princess looking beautiful. Genevieve said she was sad while we were away, but the day she knew we were coming home she jumped at every sound, even from a dead sleep, looking for us.

Today, I learned that some angels wear green and drive big vans. One is named Derrick. This particular angel, a wheelchair technician, has been conspiring with Abbie's therapists for well over a year about how to get her into a power wheel chair. Today, we were blessed with the results of their behind-the-scenes planning. I had expected a wheelchair like she has now with a motor under it, not knowing that we would be speed warping into High Tech Land.

The power chair looks NOTHING like what she has now. It sits on a base that reminds me of the scooter chairs you see seniors zipping around in, although Abbie's chair has two front wheels. We seated her in it, and she fit very well. She was then able to use the toggle switch to control the chair: elevating her seat way up in the air -- to a position that will allow us to seat her without bending over, what a blessing for our backs! She could then move it all the way back down. She also learned how to recline the chair (it went wwwaaayyyyy back) and then incline it again. It took her a little while, and a change of the type of switch, for her to really get the hang of it, but she definitely conquered the recline move by the end of therapy today! Eventually, she will be able to use the switch to drive the chair around -- although I did ask about remote control brakes!

We will be working on the switch access at OT on Wednesday, and then perhaps we can bring the chair home. I am stunned by how remarkable a piece of equipment it is, and so overwhelmed that all of this planning went on without my even knowing it. Much of a special needs mom's mental energy goes to figuring out what her child needs and how to get it. To have this process go on without me, and result in such an amazing chair....I cannot put into words what this means to me. More importantly, I cannot imagine what having some control is going to mean to Miss Abbie.

I got a huge grin from her when I mentioned, "Abbie, you are going to be able to drive before your brothers are!!!" So, consider that fair warning...if you visit Kahala Mall or the surrounding neighborhood, be on the look out for a girl in pigtails speeding by in black blur. Once she gets going, I'm not sure there will be any slowing her down....in many, many ways!

Gimme Five (Times Eleven)

2009-07-10T00:41:00.000-07:00

Wow, I didn't realize it'd been so long since the last post. This summer schedule has been kicking my tail, and now we are in the midst of painting the whole interior of the house and moving rooms around -- a little extra chaos is always fun.

Abbie has been doing magnificently. During PT on Monday we sat her on a chair because we wanted to work on knee bending. She was doing it so well herself, that we decided to have some fun with her arms and hands. An easel was set on a desk in front of her, upon which we sprayed globs of the foamy soap she so loves to play with. Now understanding this was her chance to make a big mess, Abbie began moving her arms toward the middle on her own, something she's never done...back and forth she went. We would support her elbows to help with the weight of her arms, but she knew just what to do. Seeing new things makes therapy sessions fun!

On Wednesday we went to se a different therapist, who asked what we'd worked on in Monday's session. Abbie, laying on the floor, lifted her arms and moved them toward the middle. Wow! Working against gravity AND answering a question. We were quite impressed, but that was just her opening act. Soon after, still lying on her back, she started bending her knees and lifting her legs. She's never done it that way -- she would only lift a straight leg. Right leg, left leg, right leg, left leg...we were giggling by this point. We then sat her in a chair, so she could practice good knee-bending, as well as moving her leg to kick a ball. She worked hard for a solid 30 minutes, which prompted her nurse to say, "Abbie, I don't know what's changed, but it's all clicking inside you now...you know how to move your body." Another really fun day of therapy.

We recently took Abbie to one of RJ's allstar baseball games. It was more than a little hot that day, which I remedied by taking wet cloths in a cooler with an icepack, rotating them on her head to cool her. It's always a hard call. We so much desire to have her with us everywhere we go, but the reality is that some places, some events are just not good for her. This trip was worth it however, before the game even started.

We were sitting under a shade tent, up a little embankment behind our boys' dugout. I had just begun her feeding shortly before the game started, when Coach John asked if the team could come see Abbie before the game. I dumped that tube of food back into the bottle so quickly sparks may have flown. He coached the twins the summer Abbie got hurt, so the tender spot in his heart for her rivals the Pacific.

The players lined up in front of her wheel chair, and took turns giving her a high five. I spoke for her as I raised her hand..."Good luck Maka...good luck Jarrod...good luck Nohili....Noah...Eli..RJ...Austin..Kalehua.." At the end I couldn't even say the names because I was tearing up. For her presence to be recognized -- and valued -- by the team overwhelmed me with gratitude. Knowing she is such a precious gift gets us through even the hardest of days, having others see it too enriches even the brightest ones.

EEG

2009-06-19T13:25:00.000-07:00

When they told me that Abbie needed to be awake for six hours prior to yesterday's EEG test, I promptly scheduled an afternoon appointment. I figured it would be a lot easier (on me) to keep her awake between 7am and 1 pm than between 3 and 9 am. We had a few moments of close-calls, but managed to keep her eyes open until we arrived at the hospital at 1:30.

They needed to hook her up, get some readings while she was awake, and then some after she'd fallen asleep. Piece of cake -- or not. We finally unhooked her at 4pm, without her ever having shut her eyes! That girl....every little sound from the hallway caught her attention. Water running through the pipes, a door closing, the boy next door in Xray wailing because he had a broken arm.

I asked the tech if we would need to come back to redo it to get sleep readings, and she said she didn't think so. Her answer basically told me the results of the test, but I thought I'd have to wait at least a week to hear the official results from the neurologist.

After returning home from my taxi-mom duties later that evening, there was already a message on the machine from Dr. Y, the neurologist, explaining that there was seizure activity noted on the EEG, and that we should not move forward with weaning Abbie off of her medication.

A couple years ago this news would have crushed me. From the beginning of this journey, getting off of medications, or not needing new ones, was a sign of progress, a way for Abbie to show she is worthy of the investment of time, energy, and yes - -money, that it takes to help a brain-injured person recover. She has many more ways to make her case now!

Every time she looked around to find the source of the sleep-stealing noise, as I watched her brows furrow in concern and empathy for the injured boy, and as I watched her grin at the tech who took the leads off her head I realized that THESE were the EEG results I was truly interested in. We hadn't been in that room for 3 years, and Abbie is a much different girl now. I can accept the seizure activity as new circuits in her brain bump up against the scarring that protected her brain after the injury. I can live with giving her a medication twice a day, and I will stomach writing its name on every medical document, if in exchange I get a happy, bright, smiley engaged girl. I think we've gotten a good deal.

To quote a dear friend: "Onward and Upward!!"

Two Thumbs Way "UP"!

2009-06-12T17:53:00.000-07:00

Yesterday brought another bonus of living in Hawaii: King Kamehameha Day. Ray had the day off, so we enjoyed it as a family. Abbie swam with her Daddy and I for about half an hour. By the end of our time in the pool, her body was moving through the water like a ballerina...all the muscle tone and restriction was gone. I momentarily wished we could grow tails and live in the water.

In the evening we decided to try to take Abbie to the movies again. It has been two-and-a-half years since our last attempt, during which she lasted five minutes. My heart was gladdened by the boys all cancelling their plans so that we could go as a family.

The movie "Up" proves that good, quality movies CAN be made today, and I was so relieved that it provided colorful adventure, good themes, and sweet comedy without any unwanted surprises or mature double entendres. Abbie was sitting in her wheelchair during the previews, but as it is a loaner chair, it doesn't fit her quite perfectly. "Why leave her there?" I wondered. So, I moved her onto my lap for the movie, which allowed us to have little conversations (me whispering, her squeezing my hand.)

She was attentive the whole time, and smiled at the funny parts. I relished having her sit, completely relaxed on my lap. I looked down the row, and saw our entire family...a very sweet time.

She fell asleep on the walk home, and had dreams of colorful balloons, a floating house and silly bird, I am sure.

Link for the news story

2009-06-06T15:13:00.000-07:00

A big mahalo to Gina Mangieri, the KHON reporter who came to the house and edited a lengthy interview to produce a piece that I think turned out well. She made talking about a difficult subject very easy, and I am grateful that they frame the story in a very hopeful, positive way.

Here is the link to see the video:

http://www.khon2.com/news/local/story/UH-Gets-Brain-Injury-Resource-Distinction/oD4wA5vgvUOz1wYzZVax6g.cspx

Sorry that I couldn't get it to hyperlink, so you will have to cut and paste it into your browser.

Hope you are having a great weekend!

Abbie on the News Friday Evening

2009-06-05T00:36:00.000-07:00

Just want to let all the local folks know that Miss Abbie and I will be in a piece that KHON, Channel 2, will be running at 5,6,and 11 tomorrow night (6/5). I found out around 10am today that they would be at the house at 11:30.

Hmmmm...no nursing help...a quick survey of the house - yikes. A quick look in the mirror - double yikes. We managed to get Abbie in the bath, dressed and looking great, the house put together, and me into the shower and at least dressed in clean clothes. No woman wants to be caught on camera without makeup and jewelery on, but it was more than I could fit into the whirlwind this morning. I suppose the viewing audience will be treated to reality TV, Vara-style. (triple yikes).

We will be part of a story announcing the selection of the Center for Disabilites Studies at UH as the Hawaii Center for Excellence for the Sarah Jane Brain Project for Pediatric Aquired Brain Injuries. Finally, there is hope of a national network collaborating to find solutions. I am hopeful the SJBP will give a voice to the millions of brain injury families currently without a ribbon, march, or national fundraiser. We've all been quietly struggling to achieve recovery in isolation. There is power, and there is renewed hope, in numbers. I am confident there will be much more to follow on this issue.

There have also been a couple more great things happen just since the last update. We visited Abbie's neurologist on Tuesday, so I was prepared for a scolding. You see, her medications have begun to make her very sleepy in the morning. I gave them separately a few times to see which one was the culprit. Surprisingly, it wasn't the spasticity med (Baclofen)but rather the seizure med (Trileptal)that was knocking her out. So, I started lowering her morning dose very slowly. Not generally something you should do without first consulting the neurologist, but I felt confident that Abbie could tolerate a slow weaning.

That is, I felt confident until I was sitting in Dr. Y.'s office and had to fess up. Instead of delivering a tongue-lashing, he broke into a grin and said, "Well, then let's do a proper weaning trial!" This involves a pre-wean EEG, then the weaning, followed by a post-wean EEG. I was thrilled by his support, but even more encouraged by what he said next. "If she fails this weaning attempt, then we will just try it again in a year. If that one doesn't work, we'll wait another year and then try again. I think that getting her off this med is the next big milestone we are shooting for." Oh...my....goodness. To have a neurologist commit to trying again and again -- blessing beyond measure!

In PT on Wednesday, her therapist turned to me at one point and said, "I don't know what you guys are doing lately, but just keep doing it. She is changing so much, getting stronger, having better vision....just keep it up!" Days like that are really fun.