What a Christmas

Life, and the challenges thrown at us, seem to keep ratcheting up lately. I sit here trying to pull my thoughts together, and find that I am somewhere between dizzy and numb.

Christmas Eve was wonderful, with Genevieve offering to spend the night since her children went ahead of her to the Philippines two weeks ago. What a blessing to be able to do all the things a busy elf needs to do without worrying about neglecting Abbie!

Christmas stars still twinkled (along with the outside lights we forgot to turn off) as we tried to put Abbie in her jogging stroller to take her into the living room, the Christmas tree and her waiting brothers. She was having none of it. We quickly changed plans and just carried her to the couch.

I warned the boys, now all old enough to have just asked for money from Santa, that they would be spending most of the morning as Abbie's helpers, since she outnumbered them in presents ten to one. She loved digging into her stocking to find gloves with little faces on the fingers, a scarf and matching hat and a new toothbrush. And, she eagerly opened her presents. All the while however, her heart rate was hovering at 170...very, very high.

Before we could get to all of her yuletide bounty, the princess fell asleep. Her heart rate didn't drop below 150, though. I was beginning to get troubled, recalling the screaming I'd elicited the day before just putting in a feeding tube -- something she normally doesn't even notice, let alone complain about.

By 5pm, having tried everything to get her comfortable and bring her heart rate down, we were on the phone with the on-call pediatrician, nodding as he advised us to go to the ER. I was thinking UTI, or something in her belly...actually, I was hoping that was the problem since that is on the "easy" end of the spectrum.

Nope. The urine culture came back clean. She didn't complain as the doc examined her belly. Her fever wasn't breaking through the meds we'd given her for pain. She didn't even really look "sick". Just that darn heart rate, which could just be a sign of pain. But, since we'd ruled out her midsection, folks started looking south, towards the Great Pink Hinterlands of Abbie's legs.

"There's a possibility, given the weakness of her bones and the weight of the casts that she may have fractured her femurs higher up."

Oh, please....God, no, not that.

Ray ran into Dr. D., one of our orthopedic surgeons, in the hallway. Having been at the hospital until midnight on Christmas Eve, he was just finishing up another long day. Note to self: Thank the Lord I am not a surgeon, and be grateful to those who are!

Calm, Rational, I-could-be-a-doctor-by-now Mom asked, "If there are more fractures, what are the options?"

"Back into a spica (body) cast" was the answer I anticipated and got.

Dr. D. exited, right along with Rational Mom. Broken, Scared, Overwhelmed Mom sat back down and resumed pleading. "Please God, I know somehow we will make it through whatever comes, but please....not this again!"

The Xray tech made her second visit to Abbie to get a better picture of the femurs. And then we waited...

Thankfully, they had a TV on the wall of the room we were in. Amazingly, Abbie was watching it. "Home Alone" was on, and she was getting quite a kick out of "Crazy Kevin" and his antics. Her concentration, vision, and smiles gave my flagging spirit some reinforcement as the waiting continued.

The doc walked in with the only Christmas present I wanted: no new fractures! At this point it was kind of a puzzle, with the clearest answer being that her chest, which looked sort of junky on Xray, was brewing an infection. The doctor mused about admitting her and starting IV antibiotics. I gently countered with, "Isn't there something else we can do?"

Something else won out: a shot of Rocephin in each thigh, and Gtube antibiotics and we were on our way. Home. What a blessing!

My parents arrived on 12/26 to find us rather strung out, but hanging in there. We were excited to spend time together, but didn't really plan on doing it all by candlelight. Around 7:30 our whole island lost power. The pioneer lifestyle is fun for boys, but not for fragile little girls...or actually, not for their mommies.

Radio reports said it would be 12 hours at least, so we settled in for the night. I do not make a good pulse-oximeter, but with Abbie having something going on in her chest, it wasn't as if I could just tuck her in and kiss her goodnight. I absolutely HATE the beep-beep-beep of an alarming pulse-ox, but I sure missed it last night. I had to trust my ears and eyes all night. By morning, when the power came back on, I was officially ready for the looney bin. Sleep deprivation creates insanity as quickly as raising teenagers does!

But, I'm rested now and Abbie is much, much better. This evening my mom and I were putting her to bed and talking about her cousin, Cooper. His 6th birthday is coming up in January. I told Abbie, "That Cooper, he keeps trying to catch you...he's going to be six...but then, WHAM, you have another birthday and get really far ahead of him again."

She grinned the biggest grin my mom has ever gotten to see. What a gift! As I type she is smiling in her dreams...sometimes she even laughs. I pray that one day soon she can find the same joy and freedom in her waking hours.

I want to balance what feels like a "whah, whah, whah" update with an amazing thing that happened this week. Ray called and told me to open my email because he'd forwarded something to me. His voice sounded strange, so I got nervous.

Once I read the forwarded email, my voice got funny, too. Tears will do that do you. A group of folks who work for him wrote : We decided that we wanted to do something for you for Christmas in a little different way…….we have purchased a gift card for Tiffany at the Kahala Spa. It waits for her at the Boutique. It will get her their special Kala Ko”iko”I LomiLomi

Can you believe that???

As scary as it gets, God's assurance is greater. As hard as it gets, God's power is stronger. As sad as it gets, God's promises are sweeter. And, as lonely as it can feel, God's love is unfailing.

The surprising thing remains...for here and now, He does all of this through people. I know I will die with a look of astonishment still on my face, and my first word to my Creator will be "Wow!"

"Get Me Outta Here"

Um....apparently someone neglected to tell Abbie that you can't hop out of bed with two huge casts on.

Last night she began sitting herself up and wriggling, as if to free herself. Today Genevieve noticed her raising and moving her right leg. Funny, WE can't move that leg without vigorous, hearty protests from our girl...but on her own, it's no problem. I think she was enjoying moving about, standing up, being on hands and knees, wheeling around in a stroller as much as we were (probably more). Her mind continues to tell her to GET UP -- I love that, but it is heartbreaking to watch her hit the wall, the big pink fiberglass wall, that keeps her restrained right now.

I was going to write about how much better her pain level is, but I was delayed in posting by a huge meltdown. I can't tell you what it does to me to have her crying inconsolably. I can't giver her the meds fast enough. I talked to the surgeon today, who felt that we should be able to taper down the Tylenol with codeine. We have somewhat, but when those cries begin, I don't care about anything but getting her comfortable. The surgeon feels that we will take the casts off on Jan. 13. Not exactly around the corner, but having a date makes it seem closer!

As she was whimpering, I put my hands over her knees and prayed for God to send the power of all the prayers being lifted for Abbie. The next moment she began crying loudly, and her knees got hot. It was strange...no other part of her cast was hot, just the part over her fractures. I don't understand it, but I do believe that in that moment each of you were standing there with us. If nothing else, it helped this mom not feel so alone and overwhelmed.

I walked into the bathroom tonight, looked into the mirror and realized that at this hour eighteen years ago I was in labor with my first child. I was young, and had not a clue about what I was getting myself into. It's amazing Chase survived me. In that mirror I saw unknowing youth that had been replaced with a few wisps of gray and some hard-earned wisdom. I still can't believe that tomorrow I will be the parent of an "adult" (please, note the quotations!). Does anything change us more than our children? Perhaps only our Father.

I pray that in the silent of the night, anticipation fills your heart -- Emmanuel is coming. God is ever with us.

Settling In

After a very difficult weekend it seems that things may be calming down for Miss Abbie. We gave her Tylenol with codeine very four hours through Sunday evening, just to try to stay ahead of the pain. Sometimes it worked, sometimes (like during diaper changes) it didn't.

She was able to go all night without an additional dose of pain meds last night, and this morning was resting comfortably while satting 100. What a blessing to not have respiratory issues to deal with right now!

She looked much, much better yesterday evening and was able to have an eye-blink conversation with me. She answered all my questions appropriately, and held her eyes closed for a good long time when I reminded her that Christmas was near and Santa would be coming to her house.

Looking back I realize I spent a good part of the weekend in shock. It was chased away by an intense migraine on Sunday morning. Ray quickly sent me to bed so I would be ready to attend the twins' championship football game that afternoon.

I made it to the game, but felt like an alien standing in that park...not quite a part of the same world as everyone else there. By the time we were celebrating the championship win, I was woozy and the park was spinning. Kyle drove me home, and back to bed I went.

But, finding later that evening that Abbie was doing much better made me much better as well. We'll just take this day by day until we get to "Cast Off Day 2"...I'd really never planned on making a sequel to that movie!!

Thank you so much for your prayers..we feel them. Abbie's eyes light up and she smiles when I remind her that many people are praying for her. Thank you for not letting her be alone in this!

The Unthinkable

Note: I am posting two updates in one day. Please do not read this one first. Scroll below to "Joyful Days". God gave us those to get us ready and I want you to know the joy we had this week before you read about how the week concluded.

OK, I know most of you are probably cheating and reading this one first, but I'll continue anyway...

As I wrote in the previous update (whom all of you compliant ones have already read..way to go!), Abbie had a wonderful week, and by the therapy session on Friday her body was in just amazing condition. Her muscles were so relaxed that we were able to move them any way we wanted with no complaint or resistance from her. It was almost strange, but in a wonderful way.

We got her on her knees, with her elbows resting on a foam square. That was a piece of cake for her, so we rotated the foam square to make it higher. Still not a problem. Our girl was blowing us away with her progress! Then..during a bit of a position change, she came almost up into tall kneeling (which is kind of like standing straight up on your knees). I was behind her, holding her feet, and just saw her bottom kind of shift to the right. When that happened, her knees bent way beyond the 90 degrees she's been working at. In that moment the screaming began.

It's not been unusual for Abbie to be uncomfortable after doing something new. So we took her home, crying all the way. After about an hour she calmed down and fell asleep, so it seemed that perhaps it was normal post-rehab soreness.

However, when she awoke from her nap screaming, we changed our minds. Unable to comfort her, we quickly loaded her for the trip to the ER. Ray called ahead and explained the situation, so when we arrived we jogged right in to the trauma room.

Abbie was in the bed where her life was saved, and the physician on duty was the one who resuscitated her. I had not been in that room that day, and felt privileged to be the one stroking her head now.

She was quickly given 2mg of morphine, which only moderately dealt with her pain. Things were not looking good. I already knew the truth, but was desperately hoping that I was somehow wrong.

A hideously painful round of Xrays confirmed my awful suspicions. Both of Abbie's femurs had been broken during therapy. I thought I might dissolve into a puddle on the floor. I recall turning toward the monitors and just whispering, "God, I know you are good. I cannot see it right know, but I know it."

The fractures had nothing to do with the surgery, but were rather down lower, just above the knees. In fact, the surgery sites looked great! Abbie's problem is that because she hasn't been bearing weight in so long her bones have become very, very weak. Her beautifully relaxed muscles had been deceptive at therapy, giving us signals that her body was ready to do more than it really was.

So, Abbie went into surgery around 9pm to receive 2 pins through each leg, and then new casts from each thigh to foot. This time they are fluorescent pink, as I've seen enough purple fiberglass for a lifetime.

The surgery went smoothly. She didn't have to be intubated, and I asked them not to catheterize her, so they didn't. She was on room air through the night, with pain meds to keep her comfortable. We had great nurses, so I was able to get a few hours of sleep after we were finally settled around 2:30am.

We were on the way home by 12:30 today. I was amazed that within just twenty hours we'd arrived at the ER, been diagnosed, gotten surgery and casts and been discharged. Thank you, Kapiolani!

Fortunately for us, and unfortunately for his wife and dinner guests, Dr. B. was the ortho on call last night (he did her big surgery). So, his very calm manner and my trust in him help me at least remain vertical. The bad news after the surgery is that he pushed the pins in with his hands...calling her bones "butter...cold butter, but butter." Yikes.

We will be exploring ways, both nutritional and more aggressive means to increase her bone density.

Right now we are almost too numb to cry. No Christmas shoes. No church on Christmas Eve. Back to square one. But, also I think through these years God has given us the gift of perspective.

Someone commented last night about what a setback this it. Well, yes. But, at the time Abbie was in a room on the floor where the oncology kids are cared for. A place where "setback" means the bone marrow transplant didn't take, the chemo isn't working, or the new tumor is inoperable. So, we've recieved a two-month bump in the road, not a permanent set back.

And, I know there will be good to come from this. As I looked at her surgery sites, and saw comparatively good bone there (on the Abbie scale), I wondered whether this new aggravation at the other end of her femurs may prompt them to create more bone there. "Perhaps" was the answer from Dr. D., the ortho on call today who also did Abbie's surgery. One of Abbie's PTs said, "Bone is always the strongest where it's been broken." Sort of like hearts, it seems to me.

Having JUST gotten to the point of having knees bend enough to use footplates and sit in a car seat like any other kid, I was worried about losing that. Dr. D. made my day this morning by saying, "This injury may even give her MORE knee flexion (bending).

So, today when speaking to the PT who was in the session on Friday, I recited all these "Good Will Come" affirmations. She said, "You are always so positive!" I said, "Look, it's just that we're in a place where it's 'be positive or die.'" So, we are choosing to move forward with hope.

Are we sad? Beyond words. Are we fatigued? Body, mind, and spirit. Is it unbearable to watch your daughter suffer? You know that answer. Are we relying on your prayers? Every second and for every breath.

On that note, here's a prayer list:

1. Pain abatement. She is in excruciating pain. Even sliding diapers under her bottom is torture for her.

2. Quick healing. The sooner we can get back to work, the happier we will all be.

3. Bone density. This is the long term solution. I asked the surgeon how we could get her bones stronger. "Weight bearing" was the reply. But, how to safely bear weight with fragile bones. That's the conundrum. We don't want this to become a vicious cycle...we try to bear weight, she fractures fragile bones, which we then have to cast, making them more fragile.

4. Stamina, for all of us.

Thank you for surrounding us with love and prayers. Times like this remind me that all of this is so much bigger then me, and I really cannot handle it on my own.

God is good!

Joyful Days

So many good things have happened this week, and I actually got pictures of most of them!

On Monday we got Abbie on her hands and knees at therapy. It took five of us: one at each leg, one at each arm, and one helping her with her head. That should make the reason why I don't have a picture very obvious! She did better than we had hoped, and was willing to allow her knees to be pulled up to about 100 degrees, while bearing some weight on them. We had a giant magenta lycra sling under her belly and hips to help support her weight as well.

On Tuesday I put her up on her potty chair for the first time in many months. After about thirty seconds there was a lot of...uh...production! I was so surprised, but Abbie was acting like "Helloooo, I'm ready for more than you think I am!" I was so happy I actually did take a picture of the potty and send it to Daddy, but I don't think I need to publish that one!

Wednesday took us to therapy again, where this time we did some standing. Abbie was pretty sleepy, as it seems like her meds are beginning to affect her more. But, she did well.


We started out at this angle



Then we moved up, and allowed her to bear more weight. Since she hasn't been standing in a long time her bones are not ready bear all of her weight which is why she is not standing sraight up.


Look at these ankles!! The orthotics are designed to allow her ankle to flex forward while she stands, so they are bending even beyond 90 degrees. Unbelievable!


Gotta show off Auntie Genevieve's work. I think Abbie's had four different nail colors in the past 10 days!

Thursday was a great day! Abbie was able to get an hour of standing done, in three separate sessions. But, the highlight of the day was a tea party with the Cheshire girls (and baby boy).

Abbie was tired when they arrived, but still really enjoyed exchanging presents! She recieved 2 beautiful dresses.




One matched Christa's dress




The second was a red one that both the girls have worn. They gave matching reports: "It's itchy!!!" So, perhaps Abbie will wear an undershirt, but it's too pretty not to wear!

The real squeals came (from me) when we opened the box containing a pair of Christmas shoes!!!



We then let Abbie go rest while we enjoyed Katrina's homemade scones and some fruit. Christa sat down at the piano, and seeing her profile, with her hair covering her face made me think of little Abbie, who would lead me by the wrist to the couch, say "You sit there," and then climb up to the piano bench and plunk out a masterpiece for me.




As Christa and Katrina sang and danced for us, I felt that I was seeing what angels may look like. Radiant girls, dressed in white, raising pure, innocent voices to God. Amazing...at the time I didn't know how much I would need that memory the next day.

They then went in to sing to to Abbie, who loved it.



That evening I got Abbie into an umbrella type stroller I'd borrowed, because I tried to change her wheelchair footplates myself. Brilliant move. All I succeeded in doing was making it pretty much unusable. But, placing her in that stroller was yet another exciting step because her knees bent beautifully and her feet sat properly on the footplates. For the first time since she was injured!

I wheeled her all over the house showing her off to her brothers. She sat in front of the Christmas tree for a long time, admiring the lights and soaking in time with Kyle.

As Friday morning began, I found myself rushing out of the house to make it to Matt's Christmas performance. During the drive I thought, "Wow..two months ago tomorrow we were in surgery. I can't believe how far she's come. This is so FUN..watching her actually be able to accomplish things and experience a cooperative body."

It seemed at the time that we were on the expressway, speeding toward all our goals.

In the blink of an eye, that all changed. But as our world crumbled yet again, I was buoyed by all the precious and exciting moments of this week.

Shoes!

I had a blast on Thursday afternoon shoe-shopping for Miss Abbie. The weather was so terrible that I didn't want to take Abbie out in it, so I sketched the length of her foot on a piece of paper and headed to town.

Turned out all the shoes I'd been drooling over at Sports Authority were for older girls, sizes 3 and up. Rats. So, I left there and went to the New Balance store, knowing I would need wide shoes. The clerk helped me size the drawing, and we figured she would need a 13 or 13 1/2 depending on the orthotics. She had one style in each. The 13 was pink with velcro straps, while the 13 1/2 was a purple lace-up style. I'd heard velcro works better with orthotics, but when I got home I was concerned to see that both pairs looked tremendously too big for her feet.

Matt came in to give his expert opinion, and told me that the purple pair was an absolute must, no question. Abbie obviously agreed. I explained to both of my fashion mavens that we needed to choose the pair that FIT, not the pair we thought was the prettiest.

The next day I took both pairs to therapy, along with a pair of size 12s I had at home, since the other two looked so much too big. Abbie spent close to an hour on a bolster swing -- you can think of it like riding a horse. Towards the end of the session the therapist, Jayna, traded places with me so I could swing my girl. It quickly became obvious that, just like always, the higher we went the more Abbie liked it.

Our talented orthotist, Kai Newton, arrived with a pair of orthotics that looked MUCH different than I thought they would. I'd expected the ones that go almost to the knee and are quite noticeable. Abbie's have a flexible sock-like cushion, custom-molded to her foot, that goes on first. Then we put the clear, somewhat flexible orthotic over it. It only comes up a few inches above her ankle. Pink straps completed the perfection.

We tried the pink shoes on first, but they didn't fit so well. So, we unlaced the purple ones and slipped them on. Abbie cried. I told her, "This is like all the things we've done for the first time after your cast -- at first it may hurt a little, or be scary, but in no time this won't bother you at all."

The shoes fit perfectly - so, Matt and Abbie got their wish! Here are Abbie's first pair of tennis shoes in four years:






I cried. Jayna was overwhelmed. She asked me "Do you still have that Nemo?" She was referring to a stuffed Nemo that we placed under Abbie's feet in the PICU. Jayna sat her up in a chair before her eyes were even open, and when Abbie followed our instructions to go find the Nemo below her feet with her heels, Jayna become one of our first advocates in our "Abbie Is In There" campaign. Her asking about Nemo was validating for both of us just how far we have come, and how much hope and progress remain to be realized.

Here's a picture of Kai. He was surprised I wanted a photo of him, but he does such an amazing job, and his efforts truly improve Abbie's quality of life. If you're on Oahu and need orthotics, call him at Advanced Prosthetics!




Daddy came home from a week in Nashville to find his girl up in her wheelchair with big ol' purple shoes that were just MADE for walking. And, now when we put them on we get smiles instead of tears...more progress!



The angle of this picture makes her feet look even bigger. I don't watch much TV, but for some reason I've seen the "King of Queens" episode about the "big hand portrait" more than once. This picture made me think of that and laugh. We'll be changing out her foot plates soon -- we'd put ones on to accommodate knees that didn't bend. Now, they are just getting in the way of knees that do bend and feet that want to be flat -- hurrah!

It continues to rain, fiercely at times -- my apologies to those here on vacation, what a bummer -- but there is so much sunshine in our house that the grey outside has no chance of pressing in. These are good days!

Unexpected Answers

This has the potential to be a long update, so I am going to break it up into three parts. The first, most important segment is about Abbie's first week of rehab, while the second and third parts are especially pertinent to other brain injury families - so I hope you'll read them when you have time.

Part I: Tears

We began post-op PT last Wednesday mostly just doing measurements and some sitting. Nothing too challenging, but we still got a few complaints when we didn't support her knees well enough.

The next morning I decided to lay her on her tummy across a ball, to allow her knees to bend. We had some serious tears, and they weren't all coming from Abbie. It is so very, very hard to watch her suffer, even for a good cause. It made the whole day heartbreaking for me, and took me to some very painful places mentally.

On Friday I had to miss PT to go to the dentist. Ray went to check on Abbie and Genevieve and called to report that he found both of them in tears. Ugh. By the time I returned to the hospital to pick them up, all was well, and I thought perhaps the dentist appointment had been a gift, to spare my heart of more than it could've handled that day.

Saturday was a bit better, and slowly I could see that things were getting easier each day. I told Abbie that this was just a process we were going to have to work through, so that she could do all the things she was excited about before the surgery: riding a bike, riding a horse, walking down the hall. I reminded her that it is safe now to move her body, as a lot of her resistance didn't seem to be coming from pain but from fear of pain.

Monday's PT was a HUGE improvement. She sat on a bench, with her knees beautifully bent and her feet flat on the floor. It has been four years since she was able to do that with ease. To pass the time on the bench Abbie dressed up a Mr. and Mrs. Potato Head by selecting all the various parts. No surprise that they turned out very colorfully: purple lips, blue eyelashes, pink ears, green nose...she loved it!

Yesterday I was able to lay her on that same ball with absolutely NO complaining..in fact she enjoyed it. Maria came to work with her and was very encouraged, which rubbed off on me.

At today's PT session she was again sitting on a bench, but one that was topped with a rocking wedge. Her feet were placed on a scooter board. So, she would rock side to side, with knees at 90 degrees and feet flat. Then, we would stop and ask her to push the scooter board out. Once she figured out what we wanted her to do, she was very good at it. I was thrilled to see her USE her new legs. And, not one peep of discomfort. I am amazed at how quickly things are getting easier for Abbie. Friday's appointment will included the fitting of her new foot braces, so I am thinking about going directly to Sports Authority afterward, because I was eyeing all the pink Nike shoes with anticipation on Monday...can't wait!!

Part II: An Answer from the Stars

While Abbie was in the hospital a man I worked for years ago was in town, and part of his itinerary included speaking at a breakfast Ray would be attending. Back when I knew him he was a lieutenant colonel; now he is a two-star general serving as the Deputy Surgeon General of the Army. "Take a shot!" I thought. So, I did.

I drafted a letter to Major General Rubenstein explaining my interest in brain injuries, which are now the "signature injury" of our current wars, and imploring him to direct military research funds to defining and defeating the Nogo protein and other neurite outgrowth inhibitors. I included a number of abstracts from completed research, signed my name, prayed, and gave the packet to Ray to hand deliver.

Given the overwhelming demands of his job, I would have been very content with an email saying "Got it, will look into it." I received MUCH more. I was humbled and overwhelmed that he took so much time to gather information, and I want to share some of the content so that other brain injury families can receive the same encouragement I did:

I have consulted with subject matter experts at the US Army Medical
Research and Materiel Command and the Telemedicine and Advanced
Technology Research Center (TATRC). There are several related projects
underway in this line of research.

The Christopher Reeve Foundation (CRF) is working on one project
with the "North American Clinical Trials Network (NACTN)." In the
research application submitted to the Department of Defense in September
2006, the CRF proposed that NACTN would evaluate a new treatment for
spinal cord injury: the neutralization of the axonal regeneration
inhibiting molecule, Nogo, by means of an intrathecal infusion of a Nogo
antibody. This proposal is on hold until Novartis receives FDA approval
to conduct a trial of its anti-Nogo antibody in the United States. In
the meantime, however, Novartis has expanded its Phase I clinical trial
from the European sites to several Canadian clinical sites, including
the University of Toronto.


The following related projects from the Northern California
Institute for Research and Education do not explicitly deal with
Myelin-Associated Glycoprotein (MAG) research, but they all touch
components of related pathways:

a. Novel Astrocyte Signaling Therapy to Promote Neuronal Regrowth and
Suppress Glial Scarring During Traumatic Brain Injury.
b. Promoting Neurogenesis by Suppressing Microglial Activation.
c. Role of TREM-2 in the Microglial Response to Brain Injury.
d. Promoting Recovery from Traumatic Brain Injury by Suppressing
Inflammation.

There are a multitude of pathways involved and while scientists try
to find the golden target, it becomes increasingly apparent that
combination therapies driven towards multiple parts of the central
nervous system inflammatory and apoptotic pathways will likely be
required. There has been some promising work using an antibody in a rat
animal model by University of Pennsylvania and GlaxoSmithKline (enclosed
abstract), but the challenge is trying to get a molecule so complex
through the blood brain barrier and into the central nervous system.
Dr. Mike Kubek at the Indiana University of Pennsylvania has developed a
nanotechnology for moving proteins into the central nervous system via
the nasal epithelium that might hold promise.

TATRC also has a full proposal from Dr. Song Li at UC-Berkeley that
uses the phosphodiesterase-4 inhibitor rolipram, which has been shown to
overcome inhibitors of regeneration (including myelin breakdown
products) and promote axonal regrowth; and chondroitinase ABC, which
degrades chondroitin sulfate proteoglycans (CSPGs). CSPGs were also
included in the list of articles you submitted with your letter.

Additionally, TATRC has a Congressional project with the Citizens
United for Research in Epilepsy (CURE) Foundation, which includes
multiple investigator-initiated studies for the prevention of
post-traumatic epilepsy, including the prevention of astrogliosis
(inflammation of brain cells).

Finally, there were several discussions and research posters
related to MAG research at the Society for Neuroscience conference. Dr.
Ken Curley and Dr. Brenda Bart-Knauer, TATRC, spoke with Dr. Kubek at
different times during this conference. Dr. Kubek has worked with CURE
in the past on post-traumatic epilepsy and has submitted a grant
proposal for the nanoparticle delivery of peptide drugs to the brain.


He the ended the email with something that brought a huge smile to my face:

I hope this provides some insight on the work that is being done in
this line of research and gives you some comfort in your day-to-day
challenges. I'm reminded about the daily exhortation of my very first
battalion commander. He would remind us to "never give in, never give
up, never, never, never." Your efforts are strikingly similar. Hooah!

I smiled because hanging on Abbie's whiteboard is a little, square, black magnet with simple white letters on it -- words that sum up our journey: "Never, Never, Never Give Up!"

Part III: Out of Left Field

I got a call yesterday that answered some of the deepest cries of my heart -- cries for guidance and wisdom. Answers to questions that have been lingering, almost taunting us. Why can't we get Abbie's iron levels up to normal? Why are the basal ganglia (involved in motor control) always so affected by brain injury? What should I be feeding her?

You wouldn't think there'd be a common answer to all those questions, but there is, and it revolves around a trace, non-magnetic metal called manganese.

Here's what I learned from that call:

While manganese is important in trace amounts for metabolic functions, toxic levels produce symptoms that can mimic autism and Parkinson's disease. This has been documented in literature as far back as 1819.

Excess manganese also inhibits the absorption of iron. You can think of these two elements like a teeter-totter. If not in balance, you can't get the iron in to the body.

This would fit Abbie's clinical picture, so I was very interested. But, then came a clincher.

Once excess manganese enters the brain the place it likes to settle is the basal ganglia, specifically the globus paladii. Of course, I hit Google hard last night, and found this remarkable quote:

“whole blood manganese levels were associated with hyperintense globus palladii on T-1 weighted MRI. Following liver transplantation, neurologic function improved, blood manganese levels normalized, and the MRI signal abnormality completely resolved” Liver disease in Children: Suchy, Sokol, Balistieri, p217

It caught my attention because on Abbie's recent MRI her globus palladii were indeed "hyperintense". Now, the condition of her brain is primarily the result of an injury, but given that the manganese issue fits her clinical profile, I think it could be a complicating factor in her recovery.

Here are a couple links for interesting articles about manganese, and particularly about how soy formula is an especially potent delivery vehicle for toxic amounts of it.


http://www.westonaprice.org/soy/manganese.html


http://articles.mercola.com/sites/articles/archive/2001/06/13/soy-formula-part-one.aspx

I was relieved to know that I'd been avoiding soy in Abbie's diet for a long time. But then, I caught the next punch square in the jaw.

I do make all of Abbie's food, but when I am running short on time, sometimes I use baby food in the mix. Turns out that baby food can have ENORMOUS amounts of manganese added to it. When one physician who is helping children affected by manganese toxicity tried to find out how much manganese is in baby food she ran into an interesting situation.

She looked on the jars to find that where an amount should be listed for manganese, there was instead a tilde (asterisk-looking thing). She called the FDA to find out what this meant, and was told, "That means the manufacturer knows how much is in there, but has opted not to report that to us." What???

So, I have to stay away from baby food now as well. To put this into perspective, the maximum amount of manganese a child should ingest per day is 0.5mg. 100g of baby food with turkey meat has 30 mg of manganese, while baby food creamed peaches has over 15mg. And, without proper labelling, it is impossible to tell what how much manganese is in each different baby food. I looked at the canned nutrition we had given Abbie (Compleat Pediatric), to find that it had .5mg of manganese in each can. She was getting several a day. One other place where there is risk of excess manganese is in supplements: joint formulas including glucosamine and chondroitin often have large amounts of manganese added, so you may want to check the levels if you are using supplements like these.

I just received the "anti-manganese" diet that a physician treating children with manganese-related neurological conditions has developed. I have been CRAVING dietary advice ever since I took Abbie off of her raw milk diet. I am so very thankful to have some guidance. We will start it tomorrow. The physician has seen dramatic improvements in each and every child using the diet in 1-3 months. I am hoping it will help Abbie as well. The changes in the treated children have been dramatic, but I am not getting my hopes up too high, focusing instead on just trying to solve the iron issue.

If you are interested in looking at the diet, I will be happy to email it to you. Just send me a note at varasix@aol.com.

So, it has been an amazing week of progress around here. Abbie is exceeding our expectations daily, and looking beautiful doing it. I feel that my Christmas came early, with gifts of information and insight beyond what I could have ever asked for. And, this past week I've run into so many people who've told me they are still keeping up with Abbie. You must know that especially on the hard days, when tears fall, that is the rope keeping me hanging onto the side of the mountain. Thank you!

May God bless you!

"She Didn't Have a Surgery"

Those were the words of the orthopedic surgeon today at our follow-up appointment, after he looked at the Xrays we had just taken. "She is totally healed from the surgery...treat her now as if she didn't even have a surgery. Time to get moving!"

Okey-Dokey!!!

I am thrilled at how well her bones healed, and am so very excited to get to the fun stuff now. Jayna, one of the PTs who will be helping us "get moving" was at the appointment with us today. We filled the waiting time by excitedly building a list of things Abbie is going to be able to work on that she either hasn't been able to do in a long time, or has not been able to do since she was injured:

* Getting on her hands and knees
* Working on sit-to-stand transitions
* Walking down the hall in the Walkable
* Working on flexion beyond ninety degrees for her ankles and knees.

And, the very best...asking Jayna what Dr. B. meant when he said he'd ordered "DAFOs" for Abbie's feet instead of "AFOs" (the type of foot splints we've always used.) She explained that DAFOs are molded very closely to the feet and legs so that they fit inside SHOES!!! (They also let Abbie move her foot up and down, but that wasn't what thrilled me, sorry to admit.)

My sweet girl has been stuck with clunky fiberglass boots, albeit with cute patterns on them, for all these years. Now we can go shoe shopping again!!! To truly appreciate this you must know that Abbie picked out her first pair of shoes at 9 months old, when she grabbed a pair of high top pink sandals with flowers on them and wouldn't let go. She was also the biggest shoe stealer, always clomping around the house in everyone else's shoes, finding special joy in high heels. I know I should be focused on functional improvements and physical gains, but I have to say that finding out about the shoes brought me the most joy today --- pretty shoes with a Christmas dress is making me giggle with anticipation. God is so good!

Jayna was the first PT who worked with Abbie -- we met her in the ICU. She was among the first to support our belief that Abbie was "in there" and called Speech Therapy to get Abbie working with switches even before her eyes were open. I told her this is the first "do-over" we've gotten. She saw, along with us, Abbie's legs and feet transform the the well-toned, flexible ones belonging to an active toddler, to the restricted, misshapen, unusable ones belonging to a brave, but injured, warrior. Jayna spent 3 years in Japan and recently returned, so it seems a full-circle moment to me that she is with us as we begin this journey from "Start" again, with beautiful, flexible, healthy legs. And this time, things are only going to get better.

What a day!!

Being thankful each day

Thanksgiving dawned and brought a knot to my stomach.

I was nervous about how Abbie would handle her first outing in her wheelchair since the surgery. Ray, Kyle, RJ, and Matt would be leaving for Ohio directly after dinner to attend Ray's grandmother's funeral..a mom's mind always races with "what ifs" when her children and husband board a plane without her. And, then, there was just the pain a holiday always brings - -a concrete marker of just how long we've been at this...praying, hoping, working, and a lot of days spent just hanging in there.

I was starting to get bogged down in this muddle of emotions and tears were closing in when Ray called from the other room, "Kevin is here!!" Our good friend and his wife recently had a baby, so I hoped they'd come for a visit. Hurrying into the room I said, "Where's the baby??" Kevin replied, "No baby today, but my pick-up's outside...go pick out your Christmas tree."

My mind tried to switch from thoughts of little toes to green boughs, but I had to ask him to repeat what he'd said, while Ray (who was in on this) just grinned. Kevin walked me outside to see five, huge Noble Fir trees in his truck. NOW tears filled my eyes as the scent of Christmas filled my nose. I'm an Oregon girl who's lived with an artificial tree for 12 years, ever since moving to North Pole, Alaska and finding out, ironically enough, they have to ship in trees from Oregon, making them an expensive luxury.

I was so moved by Kevin's generosity, and the thought of having a real tree, that I couldn't really speak much the rest of time he was there. But, as I thought about it later, it seems so incredibly fitting for Christmas. As I was about to break, unexpectedly, in a way I couldn't have imagined, a free gift arrived..a gift of life...just a tree, but so much more.

I was on such a high that when friends called suggesting we meet them at a beach club in the afternoon I thought, "Sure! Why not try out Abbie in her chair before dinner!!" It was a postcard-worthy day..sapphire seas meeting a turquoise sky, balmy breezes -- but not even thoughts of my waiting tree could bolster my heart. As we arrived we found out the other two families had a great spot, across the sand where we couldn't wheel Abbie. So, we all sat at the snack bar instead. Then, they all went to the roof to play volleyball -- I couldn't get Abbie up there, so I remained seated talking with my sweet friend, Loan. But, I was jealous...of parents who could take their kids out onto the sand, into the waves, up to the courts

Abbie was fussing, so I got her onto my lap to feed her. An hour of feeling sorry for myself elapsed before Ray came down to lend me his eyes. "Hey! Look at her sitting so comfortably on your lap, with those beautiful knees!!"

He was right. I was holding Abbie like all those "normal" moms I'd been thinking about. She sat with her back against my chest, knees folding right over mine. I didn't need any pillows for support or positioning for the first time in a very long time. Sweet indeed.

We got Abbie home and changed into her pretty Thanksgiving dress (pics are in Kyle's camera, in Ohio...) She slept through much of dinner, which was great for all of us. After getting most of the family off to the airport, Chase and I brought her home, changed her again and then walked over to a friend's house where we stayed, talking and laughing, until midnight.

As I look back at that day one constant pops out: friends. Kevin bringing the tree, Ray (my best friend) helping me to see, and the Arce and Jaegger families who helped me smile instead of cry. What in the world would I do without all my faithful friends...and I mean those of you who only read, who think you are "lurkers" here...your hearts are known to mine, even if your names aren't!

The rest of this long weekend has pretty much been lost in a blur of sickness. Abbie is struggling with vomiting, diarrhea, and high temps. I've been alternating between caring for her and trying to get better myself. Independently, Chase has decorated our house, inside and out, for Christmas in an amazing manner! I am going to have to take notes, since this will be my last year to have him do this.

I don't think I've mentioned that he has received a 4-year Army ROTC scholarship, and has decided to attend Santa Clara University next fall. Ray and I are both ROTC grads, and had never mentioned it to him as an option. As I told Chase when he initially raised it, "I'm not an officer anymore, I am a mom...how about the Air Force??" So, while I am terrifically proud of him, the reality of this being a year of "lasts" is beginning to set in. I also think about how he, and each of the boys, will keep a relationship with Abbie after they go away to school. I am comforted by illustrations I've received lately that remind me that family ties always remain, no matter distance or time.

I suppose one of the heartaches this week of not being a "normal" family was not having the whole family go to Ohio for Ray's grandmother's funeral. She was a precious woman who never, ever missed sending a card for birthdays, holidays or events. I so wished that I could have been there to express my appreciation and love to her family -- if you are reading this, know that my heart was there with you, and my tears are falling just typing this.

To end this on a happy note, let me share one funny story Ray related to me today. RJ and Matt are tickled to have the chance to play in snow. Today, at their great-grandfather's house a snowball fight quickly escalated into all-out wrestling in the snow. However, they had forgotten one tiny, but very important detail. Great-Grandad has a dog. As they entered the house, "Eau de Fluffy" preceded them. The clothes came off much more quickly than this lesson will leave their minds, I suppose. Rolling in snow is fun, rolling in poop is not.

May you be blessed as the Christmas lights go up...the Light of the World has come that we may always know joy, can there be any better reason to be thankful each and every day??

Cast Off Day!!

What a day! We got to see Abbie's new legs revealed, and I made my first iMovie. The quality is not as good on YouTube as it is on my computer, but so goes it. I just wanted some way, other than my words, to share with all of you the joy of today.

As the cutting began, Dr. B. said, "This is going to be like a birth experience."

"Oh, I know!" I replied. "She is going to have brand new legs."

"That's not exactly what I mean..." he answered.

What he DID mean became apparent as soon as we lifted Abbie to remove the worn-out, discolored, junky, old bottom half of the cast. She started howling just like she did when she first entered this world. Wow! "Think about it," said Dr. B. "she has been nice and toasty in the cast. It seems confining to us, but it is supportive and comforting for her. And then, all of a sudden, it's stripped away, the cold air hits her and...voila...new birth experience!"

There is a reason for the gap in the video between taking the top of the cast off and having her seated in the wheelchair ready to go...she needed all hands on deck to try to calm her initial pain and fear. While this has been an exciting day for all of us, it has been a very challenging one for Abbie. Please, if you think of her during the day (or night) pray for pain control and abatement. This is going to be a difficult couple of weeks for her as we get her bottom half moving again.

But, even with all that, I am overwhelmed at the results!! I was playing with her little foot, moving it up and down like any other child's. Genevieve and I were giggling like schoolgirls, in disbelief that these soft, flexible feet belong to Abbie. Her knees are looking up at the ceiling, instead of pointing out to the side, and everything is so beautifully aligned. Her skin is amazing as well -- I was expecting dry and scaly...not a bit. I know we need to take it slow for her sake, but I am just so darn excitied about all the things we will be able to do.

Much more to say, but it's already 1am, and I need to get my winks in while Abbie is sleeping. A triple rainbow outside my front door today was the exclamation point on a day I can only term as "Hope Delivered. Promises Kept!"

The Last Night

Abbie was smiling, even in her sleep, as we told her that this was her last night of sleeping in her cast. 12 hours from now she'll be a tiny wisp of a girl compared to what we've become used to. Her nurse, Dayna, gave her a beautiful mani-pedi today in preparation for the big event...purple, of course!

I am so thankful Genevieve will be the one accompanying me to the hospital tomorrow, because she loves Abbie with all of her heart. We were both giddy as she was leaving tonight, feeling as children do on Christmas Eve. I will be taking the camera and the video camera, as I am so curious about how the process of getting the cast off. If my technical skills allow, I will try to post the video.

Abbie's little body was thinking hard about getting sick the last couple of days. But, we received the "Chest Vest" last Friday, and that helped head off the Yuck Monster before he was firmly established in her chest. For my fellow brain injury families: this is one piece of equipment you should check with your doctor about ordering for you, especially with cold and flu season upon us. I have been extremely impressed with its effectiveness and ability to help Abbie rebound quickly. Abbie LOVES her "bumpy ride" as we call it, and a huge bonus is that after 20 minutes of treatment her arms are like rubber bands -- clear chest, soft arms...I'll take that 2-for-1 any day!

I almost can't believe we're here, at the end of this long-dreaded journey. This time of relative hibernation has been a unexpected blessing -- no therapies, no appointments --life has been pretty simple the last 4 weeks. And, the brilliant way Abbie came through the surgery and recovery has been beyond my wildest hope. Thank you for your continued prayers; we literally feel them.

All hail the end of the Purple Person-Hider, and the full return of Princess Abbie!

Relationships Matter

I would not be a good night-shift employee. I find it almost impossible to sleep during the day, and instead end up watching multiple episodes of "Jon and Kate plus Eight" -- perhaps their life makes me feel like mine is simple. Anyway, the lack of sleep at night coupled with little sleep during the day led to the inevitable crash of my body this week, thus the delay in posting.

Abbie is doing wonderfully as we cruise through this final week with the cast. She will be getting it off on Tuesday morning, 11/18. I told a friend tonight that it is like waiting for a baby to arrive - the last few days drag much more slowly as the anticipation builds. I am just so anxious to SEE those little legs, to be able to massage and stretch them, and to begin this journey of the Fresh Start with her legs.

The previous post was titled "Sweet Day." The day after that I felt like writing one called "Crazy Night." Abbie has decided that she wants to talk and play at night, usually beginning around 2am. She will start talking (Abbie-talk: vocalizing, not words) to me in a sweet little sing-song voice. I lay on the floor and say, "Oh, Abbie - I hear you. I love to hear your voice, but it's sleep time!" This will go on for a few minutes, and then the sweet girl is out the door, with Bossy Girl replacing her. The tone of her voice changes and it's no longer viable for me to stay on the floor. She wants to talk face to face and play. Whoa -- be careful what your pray for. Seeing her smile will always make me smile, but by 3:30am I am begging her to go back to sleep. So, my sleepless nights have not been a burden, but they have been tiring!

I often gird myself by repeating simple little phrases that deal with an area I am trying to strengthen or focus on. When I run I often repeat "I am a finisher" as I try not to whimp out. Lately, as I struggle to prioritize my time the phrase has been "Relationships Matter." This is where I want to invest my energy and attention, and where I am so often distracted by a "to-do list" and other goals. It always strikes me that with the tiniest bit of investment -- 2 little words -- things change.

Last week I saw a cousin, Mark, whom I had not seen since the summer of 1976. We were much shorter then, I didn't dye my hair and he didn't shave. He was here with his wife Brenda and the two oldest of their six children, Savannah and Kassadee because Brenda was competing in the international Sweet Adelines competition. I had no clue what this was all about, and was quickly introduced to a whole new subculture. Wow! Brenda's 150 woman chorus, the Melodeers from Northbrook (Chicago-area) WON, and are the champions of the world when it comes to 4-part harmony. I was also treated to a performance by Brenda's quartet, just for me, in front of the convention center -- I felt like the Queen of England! The best part, though, was having Mark, Brenda and the girls over for dinner, and getting to catch up. Family is a precious thing, and having this string retied after 32 years was more profound than I had suspected it would be. They also gave up beach time on Sunday to come to Matt and RJ's football game before going to the airport. Now, THAT is family!!





Savannah signing in silver ink -- too bad the cast will probably be too stinky to keep!



Family...except for Matt who was at camp.


On Tuesday the Cheshire family, all ten of them, filled Abbie's room with love and music as they sang praise songs accompanied by Dad playing the guitar. With Walt's Austrian roots, they make me think of the Von Trapps. They have been so thoughtful -- there's not a week that goes by that Abbie doesn't get a card, a picture, or a surprise from them. I have never met another family like them, and most likely never will. Genevieve and I were in tears watching them surround Abbie's bed.


(sorry this is a little blurry -- my camera settings were changed by an identity-protected son)



Christa helping Isaac sign Abbie's cast. Christa and Abbie are the same age, and very much cut from the same cloth, so seeing her always gives me a sweet glimpse of who Abbie is on the inside.



If every mother were like Katie, there would probably be peace in the world. She is one of my heroes!

The relationship that matters most to me, of course, is with my Heavenly Father, and even there I have to focus on not letting the time slip by without intentionally building it. There are times, like lately, where I feel a bit adrift and out of routine -- lazy, tired, distracted, all of the above. At times like this I am especially grateful for His grace -- nothing I can do to make Him love me more OR less. What a resting place for my soul. I pray that you also would be finding great joy in the relationships in your life, the people around you, and the Father who loves you without end.

Three days and a wake-up for cast bound Abbie -- Freedom is near!!

Sweet Day

Ray spent the night with his princess last night, which meant that I could spend the day with her refreshed and ready to have some fun. We got out her art supplies and went to town, coloring and writing and using the prettiest stickers. She also wanted to watched her reading program videos, which I welcomed as a chance to sit down for a minute.

At the time she was laying on her left side, so as the words "arms up" and "arms down" came on I watched her raise her right arm and bring it down. At first I thought it was a fluke, but she did it each time the words came. Woo-hoo! In planning for this surgery I had envisioned months, truly - months, of her being kind of zoned out with pain and/or meds, and really regressing in the cognitive skills she has gained. Have I mentioned that thankfully, I am often wrong? (Please don't pass that quote to my husband, though:)!

She is also becoming very good again at using her voice to let us know what she needs, as in "Hellooooo, I am awake over here," and "Thanks for reading to me, I really like this book." The sounds she makes are little sing-song notes now, so sweet.

The last dose of Tylenol she took was yesterday morning, so she is completely off traditional pain meds. I am using a couple of homeopathic remedies (Traumeel and Spascupreel) and running the Biomodulator around the clock, which is keeping her really comfortable. But, I am surprised at how well she is handling the discomfort. We even put her on her tummy a few times today --definitely a two person operation! This gave us a chance to clean her cast and dry her out with my hair dryer set on cool. Her skin is looking great. In fact, the bandaging over the incision where they worked on the adductors (inner thigh muscles) has come off already, so we can see that the scar has closed completely and cleanly. I am hoping that all the ones that we can't see yet look as good.

We are halfway to Cast-Off Day already! I am anxious to see her "new legs" and get to work on moving them again. But, for today I was just so blessed to sit with her, enjoy her being very present, reading and talking and playing and praying. I feel so fortunate that God chose us to be Abbie's family.

HOME!

We got home Tuesday afternoon, and life is immensely easier now that we are all in one place. Transportation was interesting -- I will post some pics of that. But, she grinned at not having to ride in a car seat or wheel chair!

The last couple of weeks is catching up with Ray and I, so I will post more when I'm better rested and more lucid.

Pain control is good - Tylenol once a day, plus homeopathic remedies, she's tolerating her feedings well, and looks absolutely great.

Big Steps, Little Bumps

Sorry for the delay in posting...I've been doing the night shifts, and by the time I get home in the afternoon I am focused exclusively on getting to my bed as quickly as possible!

Abbie continues to look wonderful, blessing us with many smiles and grins. She was especially happy this morning when I turned on her favorite PBS shows, "Sid the Science Guy" and "Super Readers."

She has not had any Tylenol 3 since Saturday, which blows me away. If I were in her position I would have taken up arms to fend off the folks who took out the epidural, let alone taking away all narcotics! She is also completely off oxygen now, and satting 100% most of the time.

So...why is she still in the hospital? Turns out she came down with a urinary tract infection, whis was not unexpected after three days of having a catheter. The challenge is, her infection was caused by a particularly tough bug to treat (pseudomonas). There are not any great oral medication options for this one, so she continues on IV antibiotics.

But, now that we are in a private room it is not bad at all. In fact, it is almost a luxury to still have the extra hands to help. We WILL be coming home tomorrow, however. HURRAH!

We could use your prayers for the next three weeks of being in a cast: no skin break down, complete clearing of the UTI, lungs remaining clear, and ways to keep Abbie entertained and engaged.

May I also ask that you extend prayers for another boy facing the very same surgery on Wednesday? Cade lives in California, and his mom,Lisa, and I have become email pals. I must tell you about Lisa, though. She sent me a note explaining that she recently did her first 1-mile ocean swim race in a long time...life sure changes after brain injury. Anyway, she said that she dedicated the swim to Abbie, and with each stroke thought of and prayed for her. I was brought to tears (not good when reading your Blackberry while driving--just next to the curb, not in traffic:) I know her life is just as challenging as mine, yet she was praying for my girl!! The link to his website is on the left of this update, so hopefully Lisa will update as she is able after the surgery.

I am already anxious to see what Abbie is going to be able to do with these new legs, and pray the time passes quickly. Thanks for cushioning the path with your prayers and care -- what I thought would be a rocky road has been a nice hike instead.

Out of the PICU

Just talked to Ray who said that Abbie is now ensconced in a very comfortable private room, which also has a sleeping bed for me!! The past couple of days have been very smooth. The epidural and foley catheter came out on Thursday, but her pain has been well controlled with Tylenol 3, while Valium has been successful at keeping muscle spasms at bay. She is a bit more sleepy, but I am content to let her rest and recover at this point.

The consensus from the ICU doc, the surgeon, and her pediatricians is that she looks "awesome" today, and we will most likely be heading home on Monday. She is a bit anemic, so they started some extra iron, and didn't feel it was acute enough to require a transfusion.

We were so blessed with incredible nurses in the PICU -- I am always blown away by their competence, compassion, and insight. A very, very special group.

I learned how to change diapers by myself, a mix of contortion and strength..perhaps I'll be ready to join the circus by the time this is over. On second thought, perhaps I already AM in the circus:).

But, this I know: God has once again shown Himself faithful and strong on Abbie's behalf, and in the care of all of us.

Abbie is now on the Wilcox wing, in room 208. So, feel free to visit!

Never a Dull Moment

Abbie had a much more comfortable night last night, but it didn't mean things were boring. I was dozing in the chair next to her bed, when at 4:30am a nurse gently awoke me and said, "I don't mean to alarm you, but it looks like we are going to have to evacuate, because there is a fire."

My response was "Am I dreaming or are you joking? Either way I'm not laughing."

She told me to go look out the window in the break room. OK..no joke, and I was now fully awake, so not a dream either. Orange flames and black smoke emanated from the church preschool situated 20 feet from the back wall of the hospital. I called Ray and said one of the less smart things to say at that hour, "Are you awake?" But, just as I was telling him he may want to come down, not as Abbie's dad but with his CEO hat, the nurses told me we were going to stay.

Daylight showed how much damage the preschool sustained, and how fortunate we were to have not been more affected.




The PICU is on the top floor just behind that tree. The windows you can see on the top floor are the NICU. Obviously, it was a stressful night for the staff!! This picture doesn't show the extent of damage to the preschool, but it sure does show how close it was!

The rest of the morning brought news that changed our plans somewhat. Abbie's left lung is still pretty filled with mucous. It is better than it was yesterday, but the effects of laying flat on her back during that long surgery mean that we will not be going home tomorrow or Friday as we had hoped. In fact, the PICU doc said that we will be staying in the unit until at least Sunday, with some more days after that down on the pediatric floor. Rats. But, the important thing is that Abbie is doing great and looking awesome.

Genevieve is coming up to stay with Abbie in the afternoons so that I can come home and get some rest. I'm always fading into incoherence around noon, so by the time she gets there at 1, I am really looking forward to my bed. This afternoon I went to the van, turned the key and heard "click, click, click." Noooooooo! Ray was in meetings, so I thought I'd go back inside, eat some lunch and keep wait for school to get out so Chase could come get me.

Turns out, I didn't have to wait since I had a "Holy Taxi":) on the way. I ate lunch then went into the hallway where I ran into my pastor, who had just seen Abbie. He was kind enough to give me a ride and make my day by telling me that Abbie woke up while he was talking to her, and was trying to communicate with him with her eyes, her mouth and her voice!

I think her epidural will be turned off, and perhaps even removed by the time I get back tonight. She will be getting Tylenol with codeine through her Gtube instead. I am hoping it will keep her comfortable, but realize it may sedate her a lot more as well.

We continue to be so blessed by your prayers and visits! Please keep praying for pain abatement, and for those lungs to clear. I am realizing I probably need to explain a little better what was done, but I've got to get back.

Here are our purple ballerina legs...beautiful, yes?

Yes and Yes and Yes AMEN!

We're now 24 hours post-op and I am in mild shock at how wonderfully everything has gone. I could not get on the internet in the PICU last night, but wrote some notes on my laptop so I wouldn't forget anything. As I looked back at those notes I realized I had pretty much written an update, which is helpful since I don't have much time right now.

Bottom line up front: Abbie was in surgery for 8 hours, had eleven procedures done: osteotomies on both femurs (they were cut, and pieces removed from each), head of femurs replaced in hip sockets, right hip socket reconstructed with bony material taken from femurs, adductors (inner thigh muscles) released, IT band (on outside of upper leg) released, gluteal muscles released, quadriceps tendons above knee released, peroneal tendons (outside of ankle) release, and achilles tendons released.

The breathing tube had already been removed by the time we saw her in the recovery room, and we were so relieved at how good her color was and how strong she looked. Today they did a chest Xray that was junky on the right side...but is is mucous not pneumonia. Abbie is getting treatments with "The Vest", a band that goes around her chest and thumps her hard enough to shake the whole bed. I cannot imagine what this must feel like with broken bones...but, thankfully she still has the epidural in.

Here's the update I wrote last night:


"First Verse read in PICU…opened to Psalm 18:16-19, while looking for Psalm 20.

“He sent from on high, He took me;
He drew me out of many waters.
He delivered me from my strong enemy
And from those who hated me, for they were too mighty for me.
They confronted me in the day of my calamity,
But the Lord was my stay.
He brought me forth also into a broad place;
He rescued me, because He delighted in me.”

How appropriate for Miss Abbie! For, I know the Lord surely does delight in her, even more than I do, and I am truly amazed by her. He DID rescue her that day. Finding out recently from RJ that she was face up in the pool…looking toward Heaven…I know she was never alone, and that what the enemy meant for evil God has used for so, so much good and glory.

She is overwhelmingly beautiful as I look at her sleeping peacefully, with rosy cheeks. The post-op evidence of trauma I expected to see on her face is not there. Perhaps it will come later when the epidural comes out, but for now she looks just like herself, only heavily accessorized!

I am surprised out how high the cast comes up around her waist. Getting to the G-tube is tricky, and I only hope she doesn’t end up with a sore from the cast compressing the tube onto her body. Purple it is! Bright and bold, regal and royal..and legs positioned like a Chinese gymnast in training…yikes! This is going to be an interesting month (yep, 4 weeks instead of 3) of trying to change diapers and find comfortable positions with this behemoth swaddling her entire lower half.

But…we are through it! We did it, and she came through beautifully! I cannot yet fathom that all the dread we’ve endured for the last three years about this surgery is over! Of course, she is still heavily medicated, and I think there are probably going to be some difficult days ahead, but the truly terrifying part is over! We can finally breathe and look ahead to all the exciting things Abbie will be able to do with flexible legs and strong hips!

I am overwhelmed at the faithfulness, kindness, and perseverance of our friends. Bonnie Sutton praying down the list for 2 hours!!! So many calls and emails. Katie coming for a 2 hour lunch (with Ilisha…nothing like a beautiful baby to make the heart sing)

As I got a really positive update while sitting in the cafeteria, I turned to Katie and said, “There were so many days, sitting in the cafeteria, looking out these windows, when our prayers weren’t answered…it is so great to get YESes today!!’

Another big difference…Abbie complaining loudly in the PICU when her pain got a little out of control. I was so very glad to be with the kid making a commotion! The nights of envy I had, sitting by a silent bedside, listening to other kids recover enough to throw fits, ask for Mommy and popsicles…tonight it is us! That feels soooo good!

How completely blessed we were to have Bill and Rob do the surgery, Alan do the anesthesia, Lynette and Jayna observe (with Lynette talking Abbie to sleep as they put her under.) She was never left alone with strangers, and had the best of the best in every aspect.

ANSWERED prayers still amaze me in their specificity: NO blood transfusion!! Abbie shocked the surgeons at how little blood she lost..”even in places where she should have bled a lot, she didn’t bleed!!” She was extubated before we even saw her, breathing room air before we left the recovery room. NO anesthesia excitement at all during the 8-hour surgery. They are being very aggressive and timely in dealing with pain…keeping Abbie comfortable and me confident. Bill and Rob were very pleased with what they were able to accomplish, and feel the hips went in very well once the adductors were released. 6 weeks from now Abbie and I should be back to our sunrise running date – something we will both look forward to.

Seeing the hearts of her brothers revealed. They ALL insisted on getting up at 4:30am and going with us to the hospital. At first I thought this was a bad idea on a school morning, but I was so thankful they persisted. It was an amazing blessing to have our whole family together, soaking in precious time with Abbie, each praying before they had to leave for school. Having each of them call more than once during the surgery to see how it was going and ask when she would be done. Having them come straight here as soon as she was out, wanting to go the recovery room (not a place for a parade of 6 people). Waiting patiently in the hall and craning their necks for a glimpse each time the door would open. Kisses and “Hey Abbie” as we wheeled her to the elevator; delaying the entry to the PICU so they could catch up and kiss her again. None of us have been in this place with Abbie for a long time (four and half years), so this episode has resurfaced family bonds, loyalty, and affection that sometimes get buried in the daily chaos of a busy household.

The last time we came to the PICU it was also on a Monday. Dr. Chang was the intensivist on duty that Monday as well. Tonight I went to the bathroom next to the waiting room to change clothes and brush my teeth. I looked into that same mirror…the one into which I often silently gazed so long ago, wondering what had happened to my old life, and how I could survive my new one. I didn’t see the same person tonight. You don’t realize changes day by day, especially in yourself. But looking in that mirror that had reflected such grief and bewilderment, tonight I saw joy, calm, and the accumulation of all the lessons we’ve learned, love we’ve received, and wisdom we’ve gained. Tonight, I smiled at that mirror."

So, thank you , thank you, thank you for praying so fervently and specifically -- it had a powerful, documented impact! She will need your continued support in the days and weeks to come, primarily in regards to muscle spasms. When we first saw the surgeons they explained that after the initial post-op pain subsides, muscle spasm could cause pretty extreme pain for up to a month. I answered that the same people who prayed for no blood transfusion would be praying for no muscle spasms!!

I cannot use my cell phone in the PICU, so communication is really limited. I will try to keep the updates timely, however.

We are relieved. We are blessed!!

Here We Go...

We got the green light from the pediatrician on Wednesday, so the surgery is set for Monday at 0730. My approach with Abbie in all of this is honesty. She deserves to know what is going on, what is being planned, and why. Of course, I tell her in terms that a 7-year-old can understand. Once in a while, though, she lets me know I'm not being thorough.

I was explaining to her doctor exactly what the surgery will entail, when I noticed a look of deep concern on Abbie's face. Oops! I'd forgotten to tell her one very important detail. "Abbie," I said, "You are going to be asleep during all of this. You are not going to feel anything. Uncle Bill and Uncle Rob, Auntie Lynette and Auntie Jayna, AND Mr. Bear are all going to be right there with you. Daddy and I will be waiting for you when you wake up, OK?" All better...worry lines gone. You'd have thought I would have mentioned that part to her a long time ago!

So, we are just about ready. Mr Bear (a beany baby) had a bath yesterday, her new nightgowns are stacked, and most importantly her lungs are perfectly clear. RJ's class was scheduled to have their much-anticipated week long camp beginning Monday, but late Friday evening we got an email that the camp was double-booked, so the trip would be postponed. A couple of tears of disappointment and frustration slid down his cheek, but his whole countenance changed when I reminded him that now he could be here for Abbie while she's in the hospital --something he's been very concerned about missing. So concerned, in fact, that he's been insisting that he will go to the hospital with us at 5am on Monday, and then walk the 2 blocks to school. He is not as overt in his affection and concern, but his love for his sister runs DEEP.

Ray and I are at complete peace with this surgery, and are confident that all will be well. As I began pulling everything together this evening I thought, "I didn't get advance notice the last time we went to the PICU on a far different Monday. I sure like this way better!" Part of the reason I like it better is that we can PRAY ahead of time. Here are some specific things you can help us cover in prayer:

-- Peace and security for Abbie, the bravest one among us

-- No anesthesia problems, clear lungs, extubation in the OR or recovery room

-- No blood transfusion: The surgeon says she will definitely need one, but I'm still praying. If she does need blood, we are praying it is clean, healthy blood, and praying that God would bless the giver.

-- For the team: surgeons, anesthesiologist, nurses, techs: that God would give them wisdom, precision, skill and flow, that things would just "click" in the OR

-- Abbie's two PTs, Lynette and Jayna, will be in the OR to observe, but in a way they will also be my hands and presence. I
don't think I could stand to be in the OR, even if allowed, so these two will be there as professionals, but also as my
proxy. Pray that Abbie will sense their presence and support, and that they will benefit from being in there.

-- Complete surgical success: The hips are in a position where they don't like to go back into the sockets. Please pray they'll be willing. The surgeons will also rebuild the right socket using bony material taken from the femurs when they are shortened. In addition, three muscle release or lengthenings are planned: her adductors (inner thigh), the rectus femoris right above the knee, and some tendons on the outside of her ankle. Please pray that each procedure would go smoothly and produce the best outcome possible.

-- Aggressive pain control. Abbie will have an epidural for the first couple of days, so this should really help. My goal is to not let her suffer one more ounce than is absolutely necessary.

-- Quick recovery: even more than pain control, I am praying for pain abatement. Please pray that she would not have muscle spasms, since this will be the major source of pain after the immediate post-op period.

-- Joy! We went to the lab for pre-op blood work on Wednesday. It is in the basement near the OR. As we were leaving, I saw an OR tech pushing an empty gurney. My stomach turned as I imagined putting Abbie's little body on that very white sheet, and I wondered whether all our confidence is a mirage that is going to evaporate on Monday morning. Are we really ready? Then, I realized I was looking at it all wrong. Thank the Lord that we live in a place where my girl can have a surgery to fix her legs -- how blessed we are! So, I am praying to hold on the right perspective, no matter what happens. We will count it all joy.

Abbie's OT recently lent me a copy of "The Shack", which I read in 2 days. What a preparatory blessing, to catch a sidelong glimpse at just how big God is, and how much more is going on than we can see. Every morning I stretch Abbie out on the massage table. Her favorite exercise is stretching her neck (she smiles at just the mention of it.) I call her my "swan-necked girl", and make up silly songs about that while envisioning the two of us dancing in meadow...her body moving freely, her curls blowing in a breeze and her voice sweetly carrying the tune with a giggle. For a moment, she and I escape together, as our spirits go to the meadow. The book made me realize I think God smiles at that, and perhaps even hums along.

As I come back to the massage table, and look out at the pool, I also realize that it looks much different to Abbie than it does to us. For a long time it looked like a cemetery to me...the place where our "happily ever after" died. These days I can watch the boys splash and play with friends without sadness gripping my heart - so perhaps we're back to neutral. But, for Abbie, I think she looks at it as the beautiful turquoise door that lead to her grand adventure with God. I'm so glad she came back to take the rest of us along with her!

I will try to post as soon as I can after the surgery. Your prayers are powerful and sustain us more than you know!

The Face of the Enemy

For so long we heard that brain cells cannot regenerate. False. They do it all the time in petrie dishes. Why not in injured brains of living people? Behold that bright, colorful picture above, and don't be fooled by the rainbow...this is the enemy of every person striving to recover function and potential after a brain injury. Meet the Nogo protein.

This protein, along with a few of his similar-minded friends are called "outgrowth inhibitors"; they tell injured cells not to regrow. They are the reason that precious stem cells don't seem to have much of an impact on recovery. We are loading our loved ones with millions of cells of potential, only we are putting them into an environment that will not allow them to develop. It's sort of like sitting in a Ferrari at a stoplight...you can imagine the possibilities, but if the light never changes color, that possibility is never a reality.

Lately, I've been fairly obsessed with this little devil, and my research has shown that as long as five years ago scientists were having success in disrupting the action of Nogo in the injured brains of rats, who exhibited functional gains as a result. I wonder...how far down the road we are towards trials in primates and humans.

And, I wonder if you know that in this country there are:

-- Around 5.3 million people living with some form of disability from traumatic brain injury -- this figure does not take into account survivors of anoxic injury like Abbie.

-- 1 million people who are treated and released from an ER every year because of traumatic brain injury

-- 230, 000 people who are hospitalized annually, and survive

-- 50,000 people who die every year from TBI

By comparison, the American Cancer Society statistics show 184,450 new cases of breast cancer last year. While the American Heart Association reports that the most current data assessed shows 920,000 Myocardial Infarctions (heart attacks) in 2005. I wear pink ribbons gladly, and Ray sits on the board of the Heart Association...so, EVERY malady that affects people is important. But I wonder....where are the national spokesmen, women, and campaigns, the fundraising efforts, the legislation, and the well-funded research for the forgotten, invisible brain injury survivors and their families?

You know where they are? Focused on battles that seem winnable because the enemy has been defined: cancer cells, artery plaque...while brain injury has seemed a shadowy, one-way hallway where you don't even know there's an enemy, much less can you name and identify him.

As an Army officer I learned that to defeat an enemy, you must KNOW him, and know him well. I am encouraged by the research I see exposing the ways and means of Nogo. But, an Army also needs supplies, weapons, and support. We must frame our issue more appropriately, and more precisely in order to attain what is needed to win the battle on our particular front.

I have written a letter to the chairperson of the Brain Injury Association of America, Mr Joseph C. Richert, as well as the president of my state's chapter to encourage them to frame brain injury recovery as more than a shot in the dark, to define the challenges limiting recovery (name names!!) and to ask for research focusing on making the environment in the brain conducive to recovery. We now have someone to shoot at (not Mr. Richert, but Nogo!), and that makes all the difference. If you are a brain injury family, would you consider doing this as well? www.biausa.com

Seeing a picture of Nogo gave me great hope, not only because I can envision the scientific victory, but because this very day, I can now pray very specifically. God need not wait for elegantly-designed studies and new techniques...he could strike Mr. Nogo dead in his tracks right now. Will you join me in praying for that...for Nogo to be corralled back to his normal function in the body?

I fervently believe that especially in the body of a child, whose primary urge is to grow, if we could find a way to turn that light from red to green, those little axons would sprout like spring wildflowers.

Speaking of blossoms, my little Blooming Flower and I have been enjoying these unexpected cast-free days by running together each morning. Abbie gives me encouragement and joy while surveying the dogs, birds and flowers along the way. I found out last weekend she also gives me extra training, when I went running without her. I am so used to pushing her stroller that probably weighs 65 pounds with her, the suction machine, and some counter-balance dumbbells in the foot wells, that it doesn't feel like effort to me. As I came to a hill last Saturday I fell in behind a musclebound jock-dude, thinking he would set a good pace. Five steps later I had to pass him, as he seemed to be plodding along while I fairly flew to the top. I felt so bad for him, getting smoked by a girl and all, that I thought perhaps I should explain that I'd been trained by the best:)!

As I continued my run I realized that hill was just like life. When God instructed us to "run the race marked out" for us, he didn't mean for it to be burden-free, for it's that additional weight that makes us strong, builds our character, and conforms us to His image. There will come a day, however, when we run freely, the burdens permanently lifted in the blink of an eye. We will rejoice in what we carried, for it will have given birth to the wings on our feet. If my Saturday run was a foretaste, I cannot wait! When you see me, I will be the one sprinting to the top of the hill with a goofy smile, trying to catch that rascally girl in front of me.