Thursday, November 17, 2011

A New Site!!

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 !

Wednesday, October 05, 2011

A Season of Extremes

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 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 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!

Monday, August 22, 2011

Still Here...

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.

Thursday, June 30, 2011

The Tooth Fairy's Last Visit

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.

Tuesday, June 14, 2011

Sacred Journey

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 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 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

Thursday, June 09, 2011

A long awaited joy

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 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.

Tuesday, May 10, 2011

ABR 3: Abbie's Assessment

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. 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.