Monday, December 13, 2010

Abbie's Dolphin Day

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!

Monday, November 22, 2010

Love is Stronger than Death; Laughter Wipes Away Tears

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.


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!

Thursday, November 11, 2010

OR Express Lane

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.


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


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.

Monday, October 25, 2010

A Bigger Balloon

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!

Wednesday, October 13, 2010

New Information, New Accomplishments

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)?', 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.

Monday, September 27, 2010

Open Doors and Independence

 (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. ***

Wednesday, September 15, 2010

Powerful Princess

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.

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!

Monday, August 23, 2010

A Blessed Birthday

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!

Wednesday, August 11, 2010

Hard Work Rewarded

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 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!

Sunday, July 11, 2010

What Abbie's Been Up To

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 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, 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!

Saturday, June 19, 2010

Checking Back In

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.

Thursday, May 13, 2010

The Initial Unveiling

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! 

Tuesday, May 04, 2010

Mile Marker Six

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.

Wednesday, April 28, 2010

Abbie's Extreme Makeover

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'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!

Tuesday, April 06, 2010

Homeschool Helper

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!

Thursday, April 01, 2010

Brave Little Soul

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!

Wednesday, March 24, 2010

Good News

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!' 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 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!

Tuesday, March 23, 2010

Not the Vacation We'd Planned

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!

Wednesday, March 17, 2010

Neurodevelopmental Assessment

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!