The Call and Some Answers

The difficult thing about so many good things happening, is that I am so busy watching them unfold that I don't have the time to write about them, and then they begin to stack up.  I have a whole pile of wonderful things to catch up tonight.

Dr. Tennant was here last week, and in additional to the new knowledge and insights he always brings, he also brought a couple of new pieces of equipment on this trip.  The first one is called an "EIS" (Electro Interstitial Scan).  You can think of it like an ECG for the whole body, with a set of ECG pads attached to the forehead while hands and feet are set upon special plates.  Both alternating and direct currents are sent through the body during the 4-minute scan,  the resulting information is sent through a mathematical program to reduce "noise" and then a statistical program to determine "specificity" or the likehood that the person has specific issues.

The EIS produces so much intriguing information, some of which we've never been able to assess before.  It displayed a three-D image of the body with all the systems color-coded by voltage level.  Red is very high, yellow is high, grey is normal, light blue is below normal, and dark blue is greatly below normal.  Every part of Abbie's initial scan was deep blue...hard for me to see.  Then, as we looked in detail at the brain I saw two little red horns sticking out deep in the center of her brain.  I asked Dr. Tennant what structure that was, and he said, "The amygdala -- they control emotion.  If her body would allow her to be raging, she would be."  Ouch, hard for me to hear.  We also noted that 3 of 4 neurochemicals were well below normal (serotonin, dopamine and GABA), that her hormones were normal for the most part, and that a few of her minerals were low.  One very interesting piece of information the EIS produces is called a "Davenport Diagram".  Typically, this information can only be gathered from an arterial line.  When the PICU nurses would draw blood gases every 4 hours, it was a Davenport Diagram they were creating.  The diagram tells whether a patient is in metabolic acidosis or alkalosis, or respiratory acidosis or alkalosis.  Abbie was deeply into metabolic acidosis...still.  We know it is because she is still working her way up to the proper dosage of Armour thyroid, and the measurements will get better...but still, tough to see after all the efforts we've made.  It was very interesting to me that the program defined Abbie's primary challenge as hypothyroidism, with a specificity of 83%, which means you can bet that it's true.

I went home that night and I don't know how else to say it...my hope was fatigued.  All logic told me this was just one data point in our journey, but my spirit was tired.  Once again, the story of Peter coming in discouraged and exhausted after a fruitless night of fishing came to mind.  Jesus told him to go back out...to do this one more thing, to try one more time.  It's those words I heard in my weary spirit as I mentally grabbed my well-worn oar in my hand one more time.

Which brings us to the second piece of equipment, called Tesla lights (www.teslaenergylights.com).  A modern piece of equipment based on work done by Tesla and Lahkovsky at the end of the 19th century and in the early 20th century.  It would take me a long time to explain, so if you are more curious, there is lots of information at the website.  Abbie was able to sit in front of these lights beginning on 2/20.  After two sessions, we did another EIS, wanting to see if her voltage has risen significantly from her +53mV starting point (remember we are designed to run at -22mV).  Her voltage hadn't moved much, but one part of her anatomy had changed color -- the frontal lobes of her brain were grey!  This explained why she was grouchier and more frustrated.  Her processing was getting better, but her abilities to express and move were not (yet).

On Sunday, 2/24, after six treatments we did another scan.  Dr. Tennant's nurse, Vickie, put it best when she said of my grinning face glued to the screen, "It looks like you are looking at the first picture of your firstborn child!!"  We had raised her voltage 20 points in 4 days -- she was now at +33mV.  A long way to go, but what progress!!  

My visual brain, however, loved the colorful body I saw on the screen.  Her frontal lobes were yellow!!  The thalamus (important deep brain structure) was grey, as were many other parts of her brain.  All the dark blue was gone save for one spot in one lung.  The pulmonary artery of her heart also showed yellow.  Very interesting to me is that her dopamine level, which had been low, was now normal.  The only new input had been the light treatments.  On this day, Abbie made it very clear that her biggest frustration is her inability to speak -- but that is changing as well.

Since we began the light treatments some very interesting things have happened.  Last Monday we had a very difficult PT assessment session -- the measurements of Abbie's range of motion in her lower extremity joints were all worse now than before we started the Baclofen relaxing medicine in December.  She could not wear orthotics (foot splints), and even diaper changes were sometimes challenging because of high muscle tone.

The next day our dear Maria Margarita came to see us.  I did not tell her about the PT session, but she immediately grabbed Abbie's feet and said, "We must start here!"  She felt that the limitations in Abbie's feet and ankles were not so much neurological or even muscular, but rather because Abbie had a "frozen" bone (talus) in her ankles.  We used copious amounts of castor oil and Arnica gel, but two hours later Abbie had ballerina legs...I could not believe it.  We have kept up the work this week with more castor oil (sometimes she even sleeps with castor oil bandages wound around her legs) and a homeopathic gel called "Traumeel" that really helps the discomfort after the hard work.  Abbie wore her orthotics to church on Sunday, and kept them on for hours.  The same little girl whose feet couldn't be coaxed into them for one minute the week before!

Her words have been coming as well.  The other day I suctioned her and I thought I heard her say, "Thank you"..so I asked her if she had said it.  Immediately, a huge grin, dimples and flashing eyes evidenced her excitement at being understood!  Today, her nurse asked Abbie if she wanted to be suctioned, and then waited.  When I looked at Desiree she said, "I always ask her now, because last week she told me 'No!'"  Since Abbie has many ways to get her point across, I didn't think too much of it, but did ask, "How did she tell you 'No?'"  "Oh, I mean, she said 'No' with words.  So, now I always ask first."  Hurrah!

Today brought our afternoon speech therapy session at UH.  We've been trying a new joystick switch with Abbie that can activate a different device in each direction -- for example, the hope was that eventually she will be able to pull to the middle for "yes" and to the outside for "no".  First, though, we have to teach her to use it.  We started by letting her pull to the outside for "yes", because that is the movement her body naturally wants to make.  Last week, thanks to a wonderful switch toy sent to her by Jordan, we motivated her to pull to the middle.  This is really, really hard work for her as she has to overcome a lot of tone to do it.  

Today, we put the joystick in the right hand, with the "yes" requiring her to pull to the middle.  We also put her old-style switch in her left hand so she could click for "no".  We started out matching colors of play-doh.  She did well at this, but really lit up once we said we could move along to reading.  It was when she was matching color words that we began noticing she was pulling the joystick out for "no" --- she was doing the move we'd hoped to teach her sometime in the future!  She matched all the color words and then we moved on to shapes.  The highlight of this part is that they introduced a word we've not worked on, "rectangle" -- after they had showed her, she later correctly identified it.  She LEARNED it in one session!!  All while doing major motor work with her hands.  It seems that she really understands moving the joystick one way for "yes" and the other way for "no" and that her body is becoming increasingly capable of doing this.  What a day!!  I was so incredibly proud of this little girl, who worked so hard that her arm was often shaking with effort.  She is my hero.

When that call to do "one more thing" comes....summon your last shred of strength and answer it.  He who calls is Faithful and True, the Giver of all good things.

A Memorable Weekend

Our family spent a wonderful long weekend on Maui, with a couple of special highlights for Miss Abbie. The first, as you can see above, was her getting a chance to swim with her Daddy.

I was a little concerned about how she would react to the cold water, but as you can see...she loved it! She grinned the entire time she was in the pool, and so did Ray. My smile was pretty broad, as well.

There was some serious love flowing from Abbie to her Daddy, as she made googly-eyes at him. She especially enjoyed when he pretended to be her motor boat, and sped her around the pool.

The travel to Maui could not have gone any smoother, the weather was beautiful and the hotel was lovely. It's amazing when you can feel yourself being blessed as it actually happens. God gave us one giant sabbath to rest and recover, and it has worked wonders.

The other thing that amazes me sometimes is when other people view Abbie through the same lens I do, especially when they are strangers. The day we were leaving we spent the morning hanging out by the pool. A man named Mark walked up with his 7-year-old daughter, Brooke, because her interest had been sparked as they walked by the handicapped pool lift and then saw Abbie's wheelchair. So, they stopped by to say "hello" to Abbie, and ask just a few simple questions. They were so kind, and Abbie loved having a girl to chat with, even for just a few moments, since she was utterly surrounded by boys all weekend.

A while later, Mark and Brooke came back, with Brooke bearing the gift of a cute little penguin water toy for Abbie. Mark started talking directly to Abbie saying, "You know Abbie, when Brooke and I got in the water we started talking a lot about you. We decided that we see a lot of courage in you, a whole lot of courage. And, that you help take our fears away."

I was stunned by his choice of words, because not only is that what I see in Abbie as well, but from the beginning the Lord has been using this whole journey to rid me of every fear except the fear of Him. And, I was so thankful that Mark chose to speak directly to Abbie, and to acknowledge her so powerfully.

I am so thankful when God sometimes uses real people to speak real words that I can really hear. Below is a picture of Abbie, and her new friend, Brooke.

Validation

This past week brought me two types of validation: the opportunity to validate the amazing precision of Maria Margarita's work, and the chance to have professionals validate the fact that Abbie is reading. What a wonderful week!

First, to our dear Maria. In our session last Tuesday she began working intensely on Abbie's chest. In the midst of her work, she paused, looked up at me and said, "There was some trauma here, on the left side of the trachea, caused by the initial intubation, I believe. It is affecting her pericardium (lining around the heart), the pleural lining (around the lungs) and the diaphragm. All of those connective tissues just clamped down after the shock of the injury and then this intubation trauma"

I was speechless. There was NO way she could have known that Abbie's medical record describes the ET tube being improperly positioned just a bit when the paramedics placed it, and it having to be repositioned in the ER...causing some trauma to her trachea.

As she continued to work, Abbie's chest broadened out below her thorax and she began to engage her diaphragm in breathing. Abbie has had a much better week overall in the respiratory department, and I know it's because of Maria's work. There is a slight trade-off, though. After working hard with Maria, Abbie always has a lot of "junk" to dump out of her body. So, on one hand she's breathing much better, but on the other there are times when I am constantly, and joyfully, suctioning.

Maria then did some very deep work on Abbie's brain. I sat, with two neuro-anatomy atlases at the ready, so that I could understand where they were working. At one point they were working on the Thalamic Nuclei (another thing I'd not heard of before). The precise area they were working on projects into the frontal lobes, where Abbie was wanting to do a lot of work that day...it all fit together. I have 3 pages of notes from that session, but I won't include it verbatim here. If you are a brain injury parent, please feel free to contact me for much more detail.

It may sound strange, but Abbie guides Maria to the places in her brain she wants to work. There was one very specific point that Abbie was insistent about, but didn't make sense to me because it was near her right eustachian tube. As far as I know, hearing is the one faculty we've not had challenges with. Maria called me later that night, from the medical library. The point Abbie had insisted she work on was so precise that normal anatomy texts didn't describe it fully. Maria was amazed to find, in the medical text, that the specific point was a key intersection of many cranial nerves (and other important structures that I forget at this late hour.) She just laughed and said, "That little girl is going to grow up to be a brain surgeon, because her knowledge of neuroanatomy is so precise!!"

Maria will see Abbie again tomorrow, and in accordance with Maria's request, I have gotten copies of Abbie's MRI for her to look at. Taken 3 days after Abbie's injury, those images are burned in my mind forever, along with the Lord's whispered words, "It has to be this bad." I haven't looked at them since that dreaded lightbox conference in the PICU. Brimming with my newly-acquired amateur neuro knowledge, I held some of them up to the light tonight. They still make my stomach turn. A perfectly-formed brain just devastated by injury. But, I am curious what Maria will think of them tomorrow.

The second form of validation came today at Abbie's intake interview for the new semester at the University of Hawaii. We met our new student-therapist, April, who was accompanied by our long-time therapist Lisa. Towards the end of the session, I mentioned that Abbie is learning to read. I took her flashcards and books to the session, in case they wanted to see them.

Lisa and April said they'd love to see how Abbie reads. That's when the knot in my stomach formed. I can feel the breeze from the nodding heads of every brain injury family as I say, "Consistency is not our thing, " and what she can do one day, she might not do again for weeks. Rats. I had told them she could read, so now it was "put up or shut up". Plus, Abbie was using a new different switch, so I didn't know if that would throw her off.

I got out the original five flashcards that she first mastered in November. I don't know why I chose those, since she hasn't looked at them much in the last six weeks. But...she did GREAT!! She didn't get them all 100% right each time, but she was engaged, and was able to get most of them right. This great accomplishment by our little smartypants dictated her goals for this semester....LITERACY!! We are going to work reading into as many activities as we can. I am thrilled because Lisa was the first professional to see Abbie actually read. I am glad it was her, because she has been with us since the PICU, through the long days of hoping for any communication at all, and now to have her see Abbie read was a victory for us all!

These days are sweet indeed, but I could use your prayers for more sleep. I mentioned the times of constant suctioning above, and they tend to cluster in the nighttime hours. I have been getting very little sleep for the past several weeks, and it is really beginning to take a physical toll on me. I feel like an old, cranky zombie and I imagine my family would concur with this self-assessment.

But, most of all, even (or especially) during the night watches my soul just sings praises to God. Sometimes for what He is doing for Abbie, but lately I have been especially overwhelmed by the fact that He calls me "friend." Can you imagine...the God of the whole universe would stoop that low, and lift me that high? Perhaps it's because I can't really wrap my mind around the realities involved with Him being my Saviour or Redeemer, but Friend...I can grasp that one, and will never fathom why He would choose me for one. I am just so utterly grateful.

Mostly For Brain Geeks

I've been dying to write an update since our first visit from Maria Margarita last Tuesday. We had our second session with her earlier today. I am astonished. When I read the Brain Curriculum at www.upledger.com I was hopeful but a little reserved, wondering how someone could assess the brain precisely enough to locate specific lesions. Our experience so far has exceeded even my wildest hopes.

This listing is for the brain geeks, and parents who have morphed into such:
(Others can skip everything in italics:)

Todays' work:

Assessed and worked on lesions on the R. cerebellum, R. cerebrum. R. sensory integration area

Abbie's spinal cord had been pulled up through the foramen magnum (hole at bottom of skull), and was swollen, preventing it from returning to its proper place. Maria dealt with this as well as resolving the adhesion that had formed between the foramen magnum and C1.

Noted R. posterior cerebrum / temporal lobe swelling between the atlas and the foramen magnum

Abbie worked on the anterior/posterior mobility of her left cortex, and the midline/posterior rotation of both cortexes.

There was some restriction in the L. temporal lobe area, which is affecting Wernicke's Area (speech). Abbie worked hard to get her L. temporal lobe back into it's proper space.

Much work done on her ventricles (fluid containing vessels in the middle of the brain). There were anterior adhesions, so that the R. and L. were stuck together. The posterior ventricles were rotated in opposite directions: R. was inferior and L. was superior. All of this together resulted in tremendous pressure on Abbie's skull, impacting the vascularization (blood flow) and Wernicke's area, as well as the L. cerebellar peduncle (I did not know until today that my body contained such a thing as a "peduncle"!)

L. cerebellar peduncle had issues at both inferior and superior attachments, but particularly at the superior -- it had been stretched to its max, but not torn

Maria worked on the membranous system to address some of the ventricle issues. The R. middle inferior ventricle stretched to allow fluid back in. The L. side was swollen and the right side had no fluid. The fluid rebalanced very well during treatment.

It was interesting that Abbie's lungs exactly mirrored the condition of her ventricles. The left lung was swollen and the right had reduced volume. We have been observing this for months now, but were at a loss as far as how to treat it.

Maria balance Abbie's lungs, and stretched the Media Stinum (sp) - the connective tissue that runs from the thorax in front to the spine in back to make the compartments for the lungs. It had become quite constricted, which showed in the shape of Abbie's ribs as well as the tightness across her back.


....and that was all just today!

Last time we worked on her occipital lobe, which has been deviated and was compressed, as well as giving her frontal lobe more room and lifting the weight of her forehead off of her eyes, allowing her optic nerve to function better. And, boy..has it ever! Her vision is noticeably better...even the store clerk at Banana Republic remarked about that.

In the first session Maria worked quite a bit in Abbie's mouth and around her cheeks and nose. As with the first session of Rolfing, I saw physical differences in Abbie at the end of treatment...amazing!

It is a wonderful blessing having someone to talk indepth brain stuff with. I have avoided gaining precise knowledge for years, because it just hurt my heart...I already knew many things were "broken", so I didn't want to dwell on it. But, now I am consuming anatomy texts like water.

Maria is an exclamatory answer to a prayer I had not even prayed yet, nor knew how to pray. Her skills, insight, and compassion are remarkable...I feel like Abbie has been waiting around for Maria, waiting for a partner to help her. Abbie knows exactly what she needs to do, and today even turned her head in specific ways to lead Maria to the "next spot" to work on. Maria says she's never worked with a child so committed to working long and hard (1.5-2 hours at a time), and is overwhelmed with how quickly Abbie responds to the work.

After our first session, we went in the other room to chat. Her first impression is that Abbie is "so strong." I just smiled at the validation of all we knew. She continued by saying that Abbie is very, very present, aware strongly of who she is and is adamant that she is NOT a baby, but a big girl. Again..more validation. Maria feels that Abbie is "burning to talk, because she has something very important to say..." Can't wait to hear it!

Maria has worked with brain injury patients for ten years, so I believed her when she said she did not make the following comment lightly -- she has seen too many families sustained only by hope to do so -- she said she feels there is great hope and much promise for Abbie. There is LOTS of work to be done, but Abbie is responding so well.

Maria Margarita is a European woman, imbued with the class and grace that seem to be their birthright. She just moved to Honolulu last month, so if you live here I will gladly put you in touch with her..email me at varasix@aol.com. If you live elsewhere..I would recommend contacting the Upledger Institute to see if a trained provider lives near you.

This is the biggest leap forward, in my eyes, since we met Dr. Tennant. God is so gracious to forgive my weariness and temptation to quit, and send not only sustenance but a renewal of hope!

One last quick note...please pray for my aunt, Lavonne... last week I spent time on the phone talking with her husband, Elmer and Lori, one of her eight children, about putting a trach in...boy, there is wisdom I wish I didn't have. She has since gotten one in, but is still on a vent with heart and lung issues. Many of you know how winding this road can be, so please remember them in your prayers.

New Beginnings

"What to you mean Christmas is over??" Abbie's look of concern at the words "It's bedtime..." But she did sleep very well in her new ballerina flannel PJs...thanks Grandma!

Aloha!! I'm now sufficiently recovered from my Sugar (Bowl) high and low to put together a cogent update. What a couple of weeks for our family! Abbie did wonderfully while we were gone. Fortunately, those caring for her were wise to withhold just a bit of information from me while we were gone. Each day Abbie would cry for a period of time because she missed us. One of the days Debbie finally took her into our bedroom so she could feel "closer" to us...it worked. Most importantly she stayed healthy and looked great when we got back -- thank your for your prayers.
We've decided, despite the outcome of the game, that we would travel to the Sugar Bowl again tomorrow...and I'm sure the reason why didn't make it onto the national telecast. I will never in my life forget what happened as the game ended. Even though we were beaten soundly by a talented Georgia team, I don't think one white-shirted Hawaii fan left early. As the seconds ticked to zero, as one we stood and applauded our boys who'd endured such a rough night. And then came the music...the band sounded the first notes of "Hawaii Pono'i", and again as one we serenaded our boys with love and pride. Many times this season, late-game heroics proved my belief that Love Always Wins. But, in the Superdome, with painful evidence still illuminated on the scoreboard, I was part of a love that transcends winning and losing, which showed me that, all appearances to the contrary, where there is great love, there are no losers

A great blessing of the trip was catching up with our friends, the Garguilos, who now live in Gulfport, MS. They live 2 blocks from the beach, and moved in 24 days before Katrina. They know that number specifically because there was a 30 day waiting period clause in their insurance. The row of houses that used to stand between them and the beach ended up on their house. They could not see their house and had to chainsaw a path to it. With a lot of sweat equity and emotional investment they have rebuilt not a house, but a home -- a mix of new walls and doors and windows salvaged from their yard. Fred and Michelle's friendship was shown as gold in our fire after Abbie's injury, and it was amazing to me the commonality of emotions we share in lives changed so dramatically, and instantly, by water.



We are looking forward to big things for Abbie in this New Year. We continue to pursue the baclofen pump issue. I spoke last night to a mom whose son was traumatically brain-injured 10 years ago, and just had his third one implanted (the batteries last 5 years). It was great to be able to ask another mom questions about complications, effects, and simple things like, "Does it make him resistant to lying on his stomach?" She had glowing things to say about the impact it's had on her son's life. I've also been emailing with another precious mom who has been willing to share in detail the story of her son's implant, even though he passed away 5 months ago. Opening such a wounded part of your heart is a heroic act. ..thank you, Susan. I am hoping to link up with the Medtronic rep next week and move forward as quickly as possible.



I am always in awe of who the Lord brings to this tiny dot on the map...before I even know to ask. Sally, our Rolfer, was telling me about a new friend she made recently at an intensive workship focused on the brain. Maria Margarita has been assisting Dr. Bruno Chickly for several years. That didn't mean anything at all to me until I researched the "Brain Curriculum" being taught around the world by Dr. Chickly, with the endorsement of the Upledger Institute. I went to http://www.upledger.com/ to research this curriculum and was completely fascinated -- for instance, Dr. Chickly teaches methods to identify specific lesions in the brain, and then release them. I instantly began mentally plotting a way to get Abbie to see him. Turns out that Maria Margarita just moved to Hawaii last month, and is setting up a practice here. We had a terrific conversation the other day where she detailed her decade of work with brain injury survivors, including veterans. I am very intrigued by the possibilities in specific areas like Abbie's use of her tongue, and in general areas like figuring out the current status of her brain. Maria will be coming to see us next Tuesday, so I will certainly keep you posted.



New Year's Eve found us in a tiny jazz club, listening to true New Orleans music. As we counted down the seconds I pray with fervor that shook my body..."Let this be Abbie's year." As the trumpeter filled the air with "Auld Lang Syne" I gratefully laid down the weariness of a year's labor, of hope deferred, of joy and disappointment...it is time to begin anew, with lightened shoulders, clear eyes, and fresh hope. I am so thankful for the the turning of the page, the flipping of the calendar, and for better or worse, being able to look at the 2007 box as "completed." Time to move on carrying only the wisdom gained, relationships deepened, and faith matured. We pray that God would bless you abundantly this year, and that you would receive Him joyfully each day. Pressing foward with great anticipation and enduring hope that this will be Abbie's year


More from the Game:

Matthew, all painted and beaded up, ready to go the game. The tattoos on his face required baby oil to remove. Since we got back from the game at 1:30am and left for the airport 2 hours later, the tattoos stayed in place during our journey home. In the New Orleans airport, it made perfect sense to all the other passengers, many of whom were also wearing green, black and sad faces. In Houston we got a few strange looks. By the time we were walking, or actually running, through LAX people were giving sideways glances to Matt and RJ, perhaps wondering if they had very odd, Polynesian birth marks. Finally arriving in Honolulu, we found several news stations waiting at baggage claim. A very insightful reporter picked out Matt and RJ, put them on camera, and then said to Matt, "You look like the talkative one..why are you still wearing your tattoos??" I knew he was my boy indeed, when he answered simply, "Because we still believe."




Not the best quality photo, but I had to post the evidence of Coach Brian Kajiyama on the field at the Superdome!!! Thanks to late-night online chats Brian and I have struck up a special friendship. He is my window into Abbie's world as I ask him things like, "What does it feel like to have spasticity" and "Does it make you laugh when people talk to you LOUD and sloooooow, as if you are deaf?" As I told him, I am so grateful to him for being Abbie's megaphone to a world that doesn't hear very well, and on this night in particular, what I could hear him shouting was, "ABLE!!!!"





Da 4 braddahs, all whited-out and ready to cheer. This was pre-game, so we could still genuinely smile. But, as I alluded to above, although Georgia is a very impressive team, and for the most part their fans were very warm and kind...there's no other team I would have rather supported that night, or any night.

New Orleans aiport, 4:30am. This trip showed me that it is great to be ten. Not only can you still curl up on the waiting room seat, but the boys got a lot of other bonuses as well. Tagging along with their buddy, Kekoa Reinebold (he was the very blonde young drummer during the game, if you watched) they spent New Year's Eve first in the players lounge, playing video games and snacking to their hearts content (not to mention seeing the players), and once they were evicted from there for a team meeting, they headed up to the coaches hospitality suite where the Governor was hanging out.

One last memory...as we came down to the lobby to check out at 3:30am most of the activity had died down. We only saw one player, standing by himself in gray sweats, obviously tired but still graciously signing autographs for the small gaggle that he's never been without this season. Colt Brennan showed his class one last, remarkable time. I can't imagine what he endured that evening, both physically and emotionally...yet there he was, still giving back...a true son of Hawaii Nei.

Spying Out the Land

Last week I got a surprising phone call from the neurosurgeon's office, telling me that they'd received the referral paperwork regarding the baclofen pump and wanted to schedule an appointment for the 26th.  I assumed she meant January 26th...nope, they were able to get us in yesterday!  I was shocked and gladdened to be moving forward so quickly.

I did not have anyone to go with me to pick Ray up on the way to the appointment.  For the first time in all these years, Abbie was having a major respiratory event while I was driving to town.  I was able to turn her oxygen up to 3 liters while driving, but I could not suction her.  She was dipping down the the mid-80s on the pulse ox as my blood pressure rose, and thoughts of pulling over on the freeway rapidly filled my head.

Stopped at a light a block from Ray's office, my heart was groaning from the stress of Abbie's condition and from disbelief that it "had come this"...checking out a baclofen pump.  God spoke to my heart and said, "You are not putting the pump in today, just go gather the information, go spy out the land."  That last part, about spying brought to mind images of the twelves spies sent to the Promised Land.  My stress-induced retort was, "Well, Lord, this sure doesn't feel like I'm looking at the Promised Land!"  I promise, I think I heard a heavenly laugh, and then heard, "Well, what exactly do you think those twelve spies thought as they peeked down on giants in the land??"   Oh yea....gotcha!  I could almost hear Joshua exhort me "Be strong and courageous, be very strong and courageous."

Dr. M, the neurosurgeon was wonderful, and spent 45 minutes with us assessing Abbie, answering questions, and giving detailed explanations.  He was concerned about Abbie's need for oxygen, but I just didn't have the stamina, and did not want to consume appointment time to explain her healing cycles that come at specific times of day as a result of the many things we are doing.  He does think Abbie is a great candidate for the pump, and that it would offer much more relief than oral baclofen with significantly fewer drug side-effects.

The oral form is starting to really kick in as far as loosening her muscles, but I do think she is starting to become a little more glazed and less responsive.  Dr. M. has placed about 100 pumps, and when I asked how many families who had had a good trial (where they inject a dose into the intrathecal space to see if the medication will work), were then dissatisfied with the pump because the results were not as good as the trial.  He thought long about that, and then said he didn't have any patients in that category, and that all the families were very happy with the outcome.

Ray and I both really liked Dr. M, and agree that the pump is the best option for Abbie right now.  Dr. M. agreed that it may be beneficial to have it placed before her hip surgery so that she is as comfortable as she can be during the recovery.  So, in the next couple of weeks he will be determining the best physician to do the trial with us, as well as the best one to manage the refills and dosing after the pump is placed.

I am excited and relieved, which surprises me.  I guess I should have known that sometimes the Promised Land lies underneath some intimidating obstacles with ugly faces.  I also realize that what God  promises is not taken by force, but by faith.  In that faith, with much reassurance, we are going to move forward to the next step in Abbie's journey.  I don't have any sense of when we could actually do this procedure, but I am hoping to have it done by February.

Please pray for Abbie who will be very busy cat-sitting over the next few days to allow the rest of us to go to New Orleans for the Sugar Bowl.  We are THRILLED for the chance to go support our beloved Warriors, but Abbie was getting kind of sad with all the excited travel talk flying around.  Once I "got it", I realized we had to turn the situation into a positive for her.  Taking care of Grace was the answer.  I mentioned this to her physical therapist a couple weeks ago, and she responded by giving Abbie a "Kitty Sitting Survival Kit" for Christmas.  As I would pull each cat toy out of the stocking Abbie would grin and cluck.  She also bargained hard with her Daddy, working him all the way up to $5 per day -- talk about a push-over!!

Please pray for her nurses and friends who will be caring for her in our absence, and pray especially fervently that she stays healthy.  Times like this give me temporary schizophrenia...I am so excited to experience this with our boys, but I hate to leave her here and wish with all my heart that she could go with us.

I didn't write much about Christmas because it is a very tender spot for me.  Still painful.  Still blessed.  But, I hope that you had a wonderful celebration of the Savior's birth with your family and friends.  I prayed much during Christmas, mostly simple short prayers of "Help me" and "Hold me together".  I marvel at the fact that without God's willingness to become that little baby, I would never have had a bridge over which to carry my prayers, no matter how feeble, to the foot of God's throne.  I cannot fathom surviving without that relationship.

Will update after our return from New Orleans.  So, "Hau'oli Makahiki Hou" from the entire Vara Ohana.  May you be abundantly blessed in the New Year.  And, GO WARRIORS!

Backing Up

Yes, the whirlwind of this season caught up with me, preventing timely updates. Now with all the parties and performances done for the most part, I can try to encapsulate all that has gone on the last few weeks.

One of the most important things is that I started Abbie on oral Baclofen, a muscle relaxer, last week. Our talented Rolfer, Sally, has returned from her teaching stint in Buenos Aires, and came by last week to work with Abbie. As we discussed the highlights of the International Fascia Conference she attended in Boston recently, things which I've known for a long time became clearly confirmed. Fascia, or the connective tissue, is one of the primary electrical conductors in the body because it is continuous. Sally told me she learned that once there is a rent, or a tear, in the fascia it never really heals; just like the skin, it scars. Scars, like plastic, are not good conductors of electricity, and can inhibit the free flow. The idea of trying to preserve fascia for electrical reasons is something that western surgeons are not aware of and probably, at this point, couldn't care less about. But, Sally did encourage me that if there is anything non-surgical we can do to help Abbie, we should pursue it.

Sally's comments helped push me over the brink, and give Abbie the first dose of the Baclofen that had been sitting in my fridge for 2 weeks. I gave it to her at bedtime and she slept all night!! She awoke with a smile and with visible relief etched on her face. I gave her the second dose and waited to see if it would put her into a stupor. We played and stretched for over an hour, with her looking bright and cheerful. Perhaps this really was an answer!! Then, at 9am she fell asleep for over two hours, and no matter what we did we could not rouse her. My jubilant hope receded, and I thought again about the price of the trade-off. The second day on the medication though, she did not sleep at all. So, perhaps she was just making up for lost sleep now that her body was finally relaxed. The first three days on Baclofen produced noticeable differences in her tone, but honestly, the last 3 have not.

Seeing Abbie's relief at any measure of help with her tone has convinced me to pursue whatever means necessary to provide it for her. She smiles every time I tell her I am giving her "muscle medicine." She is at 30mg of Baclofen per day, and the max dosage is 40mg, so we don't have that much more margin to work with. This prodded me to go once again to the Medtronic website -- they produce the implantable device that delivers microdoses of Baclofen directly to the spinal (intrathecal) area. Although I've been told over and over that no one in Hawaii does this surgery, I searched the site for a provider. One neurosurgeon's name popped up, so I called his office.

The nurse confirmed that he does indeed do the implantation surgery and then refers those patients to a neurologist to manage the dosing and refills. I asked if he accepted pediatric cases, and the nurse paused and then said, "Well, he is a pediatric neurosurgeon, so of course he does." Wow!! She told me what they needed as far as a referral, and I then made those phone calls. I am astounded that all this time, a pediatric surgeon providing this service has been right down the road! Honestly, my joy at finding him has been a bit tempered with anger at a system that made me find this out on my own after years of telling me that no one was available. So it goes...

Cognitively, she continues to blossom, even with the new medication. She is extremely proud of being a "Super Reader", just like the PBS show we watch while we stretch in the morning. She is bored with working on the phonetic alphabet, and lets me know in no uncertain terms that she would much rather read words. So, I've added her second program book, meaning that we are now working on words from A through M.

Trying to check if she is really "reading" or just recognizing familiar patterns of shapes but not attaching abstract meaning to them, I figured out a test last week. Her word for "F" is "fingers." I showed her the word, but did not say it aloud. I then asked her where these were, and she started moving her fingers. She has done this several times since, although like everything in this journey, it doesn't happen 100% of the time yet. However, it was enough to convince me that she really is reading.

I am finding lately, that when we take things in isolation, out of context, we often miss the overarching theme, and perhaps the most important points. This has been especially hitting me through well-known verses -- you know, the ones we memorize that are a verse or two long because they are so good, and seem so applicable, without knowing what surrounds that particular snippet. The first whack on the head I got in this area was Jeremiah 29:11, "For I know the plans I have for you' declares the Lord, 'plans for welfare and not calamity to give you a future and a hope.'"

Like so many families I know, we have clung to this verse through some very stormy times. But, until my recent in-depth study of Daniel, I don't recall focusing on Jeremiah 29:10, "'For thus says the Lord, 'When seventy years have been fulfilled for Babylon, I will visit you and fulfill my good word to you, to bring you back to this place.'"

The promises in Jer. 29:11 were given to a people in bondage in Babylon, and assured them that their years in exile were carefully numbered by God. He told them that at the end of those ordained years of suffering, He would fulfill His promises and bring them back to the place for which they longed. These specific promises were made over 100 years before the people were carried away to Babylon. Backing up to this verse made me cherish 29:11 even more as we trust God that all of the days of Abbie's journey were divinely numbered long before her birth, each for a specific purpose, and that to us, too, He will fulfill all of His promises as He brings us out.

Knowing that it takes me a while to catch on sometimes, God hit me with this "wait, back up" pattern twice more in the last 12 hours.

"Why do you say, O Jacob,

And why do you complain, O Israel,

'My way is hidden from the Lord,

my cause is disregarded by my God"?

Do you not know?

Have you not heard?

The LORD is the everlasting God,

the Creator of the ends of the earth.

He will not grow tired or weary,

and His understanding no one can fathom.

He gives strength to the weary

and increases the power of the weak..."

If you are wading through some deep water, doesn't that just sing to your heart, like it does to mine? Would it surprise you to know that this passage ends with those familiar words, "...but those who hope in the Lord will renew their strength. They will soar on wings as eagles; they will run and not grow weary, they will walk and not be faint" (Isaiah 40:27-29, 31)

One last encouragement for you to "back up" with some of your favorite verses. On the United Nations building in New York City are inscribed these words, "...and they shall beat their swords into plowshares, and their spears into pruninghooks; nation shall not lift up sword against nation, neither shall they learn war any more" Isaiah 2:4(b)

It's really too bad that they didn't inscribe the whole verse, because perhaps there would be a better understanding of why men's attempts to bring about plowshares and pruninghooks fail so miserably. The first part of Isaiah 2:4 reads, "And He shall judge among the nations, and shall rebuke many people." Only the Sovereign Lord, the Judge of unfaltering integrity, wisdom, and knowledge, is capable of bringing the peace we all desire....and only through judgement. A totally politically incorrect idea these days, but missions begun on half of the story (or verse, as it were), relying on man's intellect and tainted motives are doomed before they begin.

OK..there's the Sunday School bell ringing..sorry if I kept you too late. Just know there are many treasures awaiting you, right behind some very familiar ground.

Divine Appointment

So, as I 've related recently, I am taking a fresh look at things to do for Abbie. This new openness isn't restricted to western medicine however, as I continue my investigations into alternatives for Abbie.

Recently a woman in my Bible study gave me an index card with a man's name and website on it. She said that Master Wu is a QiGong master from China and had helped her husband, George, greatly when he injured his back. I was somewhat interested, since QiGong is a form of energetic medicine. My interest level rose markedly however when Mary described what Master Wu had been able to do for the infant daughter of a woman who works for her husband. At about a month old the baby stopped nursing and began to regress. The physicians thought it was a neurological problem, but the baby was too small to sedate for an MRI. George was convinced that Master Wu could help, and although he was in China at the time, Master Wu did work with this family. The baby began to get better, and soon they were able to just wear her out enough to sleep through an MRI. The results surprised the neurologists who said, "Given her symptoms I was convinced she had a bleed in the brain. I can see faint evidence of it, so I know there was one, but I just don't know where it went...this is very strange."

It took me a week to finally email Master Wu's wife Kathy with a brief description of Abbie's situation and a request for an appointment. She called the next day, and we set up an appointment for the following week (today).

I was curious, but didn't yet realize that once again the picture was larger than I initially realized. I mentioned to my small group yesterday evening that I was going to be taking Abbie to a QiGong master. Immediately one couple said, "Are you taking her to see Master Wu?" When I nodded they gasped and said, "How in the world did you get in to see him???" A little surprised I told them it took one email and one phone call. "You don't understand," they said, "in China he is like...." they paused as they searched for an equivalent. "Well, beyond rock star..he can just walk in to the national leaders' offices. He holds healing "concerts" that are sold out a year in advance. He has turned down offers of 1 million dollars to heal cancers because the sufferers were unscrupulous people. It is virtually impossible to get a one on one session with him!"

I quietly grinned as I marveled at how gracious God has been at bringing the "best of the best" into our lives...Dr. Tennant, our Rolfer Sally, and now Master Wu. Ray did question me, however, about the spiritual implications of QiGong, and I assured him that I have studied and prayed greatly on this issue. I look at QiGong as a medical intervention that recognizes the importance of the spirit, but does not apply or imply any concrete spiritual doctrines. However, I prayed last night that if it in any way was counter to God's plan, will, or sovereignty He would slam this door.

We left an hour before the appointment to give us plenty of time to get to an unfamiliar part of Kaneohe (which is on the other side of the island). Once in Kaneohe I realized that the given directions assumed I took one highway, and this morning I had taken a different one. We were way off track, and would not make it in time unless I turned around right away. I turned right immediately, not caring what the street was, only looking to turn around. As I completed my turn I passed a black Tahoe waiting at the light, and recognized one of our best friends -- in that split second he recognized me as well. Watching me turn around in his mirror, he waited at the green light (he's a police officer, so he gets to do things like that:). Once pulled in behind him, I got of the car to tell him where I needed to go. He gave me a hug and said, "Follow me, I'll take you right there."

I smiled at how God had sent me an angel to follow...I don't know many people on the windward side, and what are the chances that one of them is at the corner at 9:30 in the morning, and recognizes me as I pass? Kevin later told me that he'd been delayed over and over again this morning, getting out of the house much later then he'd planned. Following behind my Angel-in-a-Chevy wiped away any doubt that today was a divine appointment.

Master Wu is a gracious, older Chinese man with very limited English and very large, gentle hands. As soon as he put his hand on Abbie's head she began vocalizing, and did not stop for the entire time he touched her during the first phase of the session. Her face flushed, and her body got splotchy. It was hard work for her. She was complaining in such a way that the dogs in the neighborhood began answering, and soon we had quite the chorus of howls, both girl and canine, echoing through the neighborhood. As it became apparent that this may be too much for her, Master Wu had me come put my hands on Abbie and then he put his hands on me. This seemed to help her, and I liked feeling part of the process and knowing that Jesus was too, because I was praying in His name the whole time.

Dayna had been holding Abbie this whole time, and we thought that perhaps putting her back in her wheelchair would be a comfortable transition. She was soon relaxed and enjoying watching the sailboats, helicopters and airplanes visible from the lanai. Master Wu concentrated on her lower left leg, and a red trail appeared. Fascinating. At the end of his work with her, Abbie was focusing so much better with her eyes that Master Wu was chuckling with delight. His kindness was apparent even as we struggled through our language difficulties.

After we were done with Abbie, we spent a few minutes talking with the help of his wife, Kathy. When we arrived Master Wu had said a Chinese word that starts with "f" that he roughly translated to "oxygen"...as in "long time no oxygen." At the end of the session he used this word again, at first saying "no" but then nodding and saying, "yes, yes, some". I turned to Kathy for insight. She said that Master Wu can sense when there is or is not healing potential. He feels that Abbie has much potential, and that the amount of progress she makes will depend largely on her. You know why I smiled when she said that.

I asked Kathy if they have ever worked with an anoxic brain injury survivor. She said that while they have worked with many stroke victims and people with spinal cord injuries, they have never been able to do a "long course of treatment" with a brain injury survivor. Well, here Abbie goes being first again. We plan on seeing Master Wu once a week to see how this goes.

After the session Abbie looked great, and was comfortable and settled. I came home and took a nap, not awaking until Genevieve had relieved Dayna. Genevieve didn't know about our adventures today, but said, "Oh! This girl is talking, talking, talking today. When we read her books she talks like, 'I already know that one!' And, when I asked her if she wanted to touch her Christmas lights she raised her index finger to do it!'"

That finger thing surprised me so I had Genevieve show me exactly what she meant. Who knows if it has anything to do with our visit to Master Wu, but I do know that Abbie is loads more comfortable tonight. She went with us to a lovely dinner and was content, quite, and engaged for over 2 hours. I believe God allowed us to meet Master Wu at this time, because I am in the right place to receive it. I didn't drive to Kaneohe today hoping he would zap Abbie into walking to the van. I went hoping to bring Abbie some comfort in the process of healing that God is doing in her.

The quest continues, and we go knowing we are attended by angels that our Father sometimes allows us to see.

Her Race

I find recently that my humbling process continues, and with it an expanding view of ways to go and things to try. Yesterday we were in the neurologist's office talking about Baclofen. That has been an obscene word around me for the last three years, but it's time to put away my pride and seek what is best for Abbie. As her cognition soars, so does her frustration with her body. As we were loading up to go the appointment Debbie said,
"I just got the wierdest look from Abbie. It was unhappy, but she wasn't complaining or teasing like usual...she just looked at me like 'Get me out of here! I am stuck!'" I, too, have been getting that sense from Abbie lately as well..she is growing more and more aware that she is trapped in her body. This can sometimes lead to a defeating cycle: she becomes frustrated with her body so her tone goes up, which leads to an even greater limitation of her body and more frustration. I am hoping the Baclofen may provide a little relief and serve as something of a bridge during this period of Abbie's recovery. We are going to start her on a low oral dose and see if it can help her relax without oversedating her. My threshhold for calling it "oversedation" will be very low, so I'm not sure we're going to be able to get to a high enough dose to really help her, but it's worth a try.

As I'd suspected, our neuro had very limited experience with the Baclofen pump, and wasn't all that impressed with it. Given the discussions I've had with other families and the research I've done, however, I don't think I'm going to settle for a "no" until we've at least done an intrathecal trial. She is putting calls in to other physicians so we'll see where that goes.

We've been working quite a bit with Abbie's reading program lately, so we've shelved the old flashcards -- the ones that she learned quite quickly this time around. I was curious to see if, after not looking at them for a couple weeks, she would still know the words on the flashcards. She did!

I got an email this morning from an incredible man. He and his family are an inspiration to us on this journey, for they are much farther down the road and to say he has accomplished much would be selling him far short! When you first see Brian you might only think "disabled", but spend any amount of time with him, and some of those letters fade away, until all you can see is "ABLE." He included a video link that recently aired on TV about an important part of his story, and I hope that you will take the time to watch it. http://youtube.com/watch?v=PIxhfdblYts

I was emailing Jordan's grandma the other day about how the recovery from brain injury reminds me of a triathalon. Sometimes our kids are deep in a healing phase, which can be difficult on them and hard on our hearts as well. At other times, they are in a learning phase where they are picking up new concepts and doing new things. This is a favorite time because it's exciting, motivating and full of hope. Then, there's the doing phase. Some would call this plateau, but I like to think of it as concreting the gains made in the learning phase. This is where commitment gets tested as you do the same things every day without seeing much improvement on the outside.

The tricky part is, we want our kids to be doing all three events at once. We want them to be healing while they are learning and concreting their gains. That's like telling the Ironman competitors to ride their bikes during the swim phase using a running motion. I believe our kids are being tested to a degree even we cannot understand, so according to God's promises I believe they will come forth as gold. Therefore, I deem this race the Golden Child Triathalon.

Now, there's another reason the Golden Child is more challenging than the Ironman. There are no clear "event change stations", no definitive times where it's time to let up on the healing and get back to learning, and as spectators this really leaves us guessing most of the time. I can only wonder whether Abbie is swimming, riding the bike, or running most days, and some days it seems like we do a little of each within the day which makes it REALLY confusing! The route and finish line are also never clearly established, so we just have to keep going. Thankfully, we have many race volunteers (you!!) to pray us down the road, and much Living Water to quench the thirst generated by such a demanding race.

I live for the day when Abbie, and each of her fellow racers, receive a victory lei and a medal around their necks and their Golden Child Triathalons are completed.

Champions

Even after a grueling, emotional game, Hercules Satele was kind enough to pause and take a photo that will be cherished by our family! Kyle (with tongue out), RJ (#7), Chase (back right), Matt (#1), and their buddies Jared and Zachary Infante. The boys also got to go into the locker room, which was a surprise blessing and profound treat thanks to Jeff Reinebold. Of course, I was limited to second hand reports of that part of the evening, but was told that not only can they really play football, but that the Warriors are a talented bunch of singers!

You can't tell from this picture that Blaze Soares will later barely be able to lift his arm to get his jersey off. What classy guys these Warriors are!!

As you know if you've read Abbie's site more than twice, the Warriors have meant quite a bit to us during this journey. I wanted them to win so badly for them...I wanted this group of young men who have been so bold in sharing their failures and second chances, their faith and their love to experience success together. None of us, no matter how long and loud we scream from the stands, will ever have an inkling of what this year has meant to them. But I do know what it has meant to us.

Why such a long tangent about football? Well, for me it has always been about much more than football, and I recently found out why I feel such a strong bond with this team. For them, it, too, is about much more than football.

Quoting from the last page of the recently-released book "Warrior Football: A Story of Faith, Hope, and Redemption:" [in response to Jeff Reinebold sharing heart-rending personal challenges] "It's in God's hands," June [Jones, head coach] says. He doesn't move right or left, he just stares out the window. "Why did I live through my accident? This isn't about football...I feel God didn't take me because of so many kids who have come to know the Lord through football."

"God is in complete control, and nothing else matters to me anymore," says [George] Lumpkin, in a whisper. "I keep telling people that God has a plan for this football team...God is healing so many people, touching so many lives...each day I'm here, I'm amazed at how much bigger it gets."

As Ellie Reinebold and I stood in the end zone watching the long-anticipated celebration at mid-field I grabbed her and said, "You tell Jeff to tell them 'Thank You' from all of us that are living on a second chance and a prayer. I feel like they won one for all of us!"

Doesn't matter if ESPN commentators state you will lose before each of the last three games. Doesn't matter if doctors say there is no hope. Doesn't matter if the pollsters discount your accomplishments. Doesn't matter if "realists" say she'll never walk.

Our God is a God of second chances, and those whom He calls to these chances He equips to walk them all the way out. He's a God who creates winners in the middle of the Pacific and walkers out of broken bodies....and the thing is, once you've seen Him in the dark and heard His voice whisper over your tears, nothing else seems as imminently possible as that to which He has called you.

"Abbie's Healing" Update

In relating all the details of our recent decisions in the last posting, I forgot one important thing! The "Abbie's Healing" tab is now completely updated, thanks to help from Jean Egan. I am not an expert in anything besides Abbie, but I wanted to pass on some of what we have learned in the last year or so. I hope you will visit that section of Abbie's site.

These are challenging days around our house, mostly because we are not having any nights. Abbie is just not sleeping, consequently, neither am I. The hours of 3-5am and 3-5pm have been particularly challenging. In the afternoon she is so uncomfortable that she becomes distraught, and there is not much I can do to calm her. Following a hunch, I measured her voltage during this time of day on Monday. Her overall body voltage was an astounding 48! (Normal is 22 or so). 8 of her 12 meridians were in the the healing range, above 50 millivolts. So, once again this is good stuff with an ugly face. It would be easier if I knew exactly what I was doing, and was certain where this path is leading. But, I don't. I just have to trust and keep moving, praying for Abbie's discomfort to be eased.

When she is so uncomfortable, her tone increases markedly, making it more difficult to work with and care for her. I become so obsessed with improving this area that often little signs of progress can slip right by me. Today, Carol came to give her healing touch at 3:15pm, right in the midst of some real struggling for Abbie. At the end of the hour Abbie was quite a bit calmer, and I asked her to say "Thank you" to Auntie Carol. She immediately vocalized, which I thought was sweet and I complimented her for her good manners. A little while later I asked her if she needed new panties, and she immediately vocalized. The light bulb went on...in the middle of suffering, when she should be distracted and uncommunicative, she is using her voice right on cue...that's a big step!

Back when I was in the Army I used to chuckle at the Special Forces guys who would say, "Plenty of time to sleep when I'm dead". Once again, my old mantra, "Be careful what you laugh at, for you might become it!" I am on the longest patrol I could've imagined, but if all this journey costs me is some sleep, then I am getting the deal of a lifetime. Please, just pray for me not to be cranky with my family (they would appreciate your help in this matter:)

The Hokey Pokey Continues

So much to write about, but let me give you the bottom line up front: we have postponed Abbie's surgery until after the first of the year. We made this decision for many reasons, but I must admit that not at the bottom of the list was the effect it would have on our family during the holiday season. We also had to consider the slim chance of a negative outcome, and whether we wanted memories of that etched on all our Christmases to come. So, there's the Cliff Notes version of of the last two weeks at our house.

For those of you with a little more time to spend with me today, here's the topsy-turvy version...On 11/2 we had a not-so-great appointment at Shriner's. We were not scheduled to see the surgeon that day, but because the previous consent form had expired they sent in the worst possible combination: an arrogant resident and an overambitious medical student. I was shivering in my pants and sweater, but Abbie needed to be unclothed for their exam. The resident looked at me with disbelief after I told him Abbie could understand everything and would communicate by squeezing my hand, and off we went. He didn't talk to her about what he wanted to her to do, so it was not surprising he got no cooperation from the frozen little girl on the table. When I finally jumped in to ask her to give us soft arms, she did. I was so focused on helping him not hurt her arm, that I didn't see the student working on Abbie's ankle at the same time. Golden rule #1 in assessment of a brain injured patient: only work on one part at a time. Guess he hasn't learned that in school yet... Fortunately, from her position at the head of the table, Debbie could see what the student was doing, and as Abbie began to whimper told him, "She's in pain, you need to stop!" That really was only the beginning of the fun, but I don't need to spend your time reciting things that I should forget. I have gotten very spoiled by the wonderful physicians we have, by being taken seriously as a caregiver and partner in Abbie's medical care, and by Abbie being seen as more than "just a case." This day made me realize, through tears and shaking, just how fortunate we are. I also, realized though, that this was just one resident, and is certainly not representative of the care we've received at Shriner's.

The trauma of that day (which required me to treat Abbie's ankle for pain through the weekend) prompted us to follow up on a suggestion that had been given the last time we took Abbie outrigger canoeing. The steersman was Dr. Rob Durkin, a pediatric orthopedic surgeon of all things. He is a great doc, and we consider him a good friend. He mentioned that I should take Abbie to see his new partner, Dr. B., who "everyone calls to consult on the tough neuromuscular cases." Wanting to talk to another surgeon about the recent changes in Abbie and what that might mean for the surgery timeline, we set up an appointment for the following week.

Abbie began to complain as soon as we got on the elevator, and was almost beside herself when we entered the exam room. I told Dr. B. that she was very apprehensive given what had happened the week before. Then, an amazing thing happened...he talked to her until she calmed down, then turned to me and said, "Tell me about Abbie." Kind of a broad question, I didn't know where to start. He asked me to start at the day of the accident. Wow!! So for a good half hour he listened to everything about Abbie from Dr. Tennant to Dr. Becker to Dr. Starr and everything in between. After taking a phone call he returned to say, "You know, meridians and electrical systems in the body are not my area of expertise, but I will agree with you that western medicine does not have all the answers." Double wow!!

We got Abbie up on the table, and she relaxed pretty well for him. She's never as loose as she is at home, although for a doctor's office this was a pretty good performance. But, I got a huge dose of reality. At one point he asked me if her knees bend easily when she's alseep. "Oh, yes!" I enthusiastically answered. "So, that means her heels can touch her bottom?" "What??" I was in shock...that thought never crossed my mind. Then I realized that is what a normal kid can do. I am so used to measuring Abbie's capabilities and progress on her own little scale, I don't even think about "Real Normal" anymore. It's a matter of survival I guess, both for me personally and for the hope that we harbor. If we arose every day and measured Abbie against the "Real Normal" scale, I think we would immediately return to bed and burrow our heads under the covers.

At the end of the exam Dr. B. said, "I hear what you are saying about the recent changes, and if you wanted to put off the surgery for 3 months, I would be fine with that. If you want to put it off 6 months, that would start to bug me. Her femur head is going to deform into more of a triangular shape, and then we are going to try to fit it back into where a ball should be. I am also concerned about losing the joint surface, so that we will end up with bone-on-bone." Ugh. Not what I wanted to hear. But you know what? I will take the difficult truths of a friend any day. This doctor LISTENED, asked lots of questions, he HEARD me, and he saw Abbie for himself. I didn't like what I heard, but I was so grateful to have his input.

I drove home thinking we should just go ahead on 11/21 rather than wait just three months. Ray had been unable to be at that appointment, and planned to talk to Dr. B. early the next week. So, we agreed we would not really discuss it all weekend and wait for that conversation to make a decision. Sometimes you have to take a time-out from the tough stuff.

After they talked, Ray called me to relate to me what Dr. B. had to say. When Ray asked, "You know what the first thing he said was?" My heart hoped to hear, "What a smart little girl, using her switch so well. " or "I can see that she is really changing." Again, reality hit me square as I heard, "Ray, you know that she is very, very spastic." Ugh, another one of those "Real Normal" scale measurements. She is doing so well on the "Abbie scale", that it was disheartening to consider the bigger picture. But again, the words of a friend cut just where we need them.

Dr. B's conversation with Ray sparked a research frenzy on a subject I thought I'd never consider: a Baclofen pump. Baclofen is a medication that relaxes muscles. Abbie was on an oral form of it for a few months after her injury, but it so sedated her that I took her off of it so that we could more fairly assess her cognition. The pump, which is implanted into the abdomen, delivers micro-doses directly to the spinal column, so that the patient gets the relief from the drug without the troublesome side effects of the oral medication. We first talked about this two years ago at Shriner's, but two things kept it from going further. First, the size of the implant -- it looks like a tuna can, only half as high. I could not imagine putting that in little Abbie's body. Secondly, we were told that no one in Hawaii implants them or manages the dosing afterwards. That makes it a little tricky.

I wanted to know what FAMILIES have to say about it, since the professionals don't live with the day-to-day consequences of an implant. I called my dear friend Sue, Luke's mom, who related several stories of families just like ours -- a few years out from the injury who had been adamantly against drugs and implants. Even though some of them had complications after the surgery, all of them agreed it was the best thing they could have done and were very happy with the outcome. I went to the website of the implant manufacturer, Medtronic, where they had a story from a near-drowning family. Scotty was injured at 2 1/2 just like Abbie, and they waited until he was six to do the implant. One of the most poignant things the family said is that now that they are not fighting high muscle tone each day, their whole family's life does not have to revolve around Scotty's injury. I was also greatly impacted by reading what children with spasticity wrote about what it feels like to always have high muscle tone. I've not really deeply considered the pain and discomfort Abbie must be in because of her tone. I also wonder what she could be doing if she wasn't fighting against her body every moment of every day!

That thought has been generated lately by...(this is your reward for reading this far)...Abbie learning to READ!! Last week she correctly identified each of her five flash cards the first time through, even when I tried to trick her. Since then her reading program has arrived, which includes books, audio CDs, and computer programs. She is eating it up!! Her motivation to learn to read is helping her vision, I think, as she now quickly focuses on her books and the computer, and tracking becomes easier all the time. This is truly unbelievable for me, and the most tangible gift of God's grace I've experienced in a long time. My little smarty-pants girl is learning to read, just like a lot of other 6-year-olds.

In talking with her therapists, they also wonder just what she would be capable of if we helped control her tone, since she initiates movement and knows what she wants to do but is inhibited by her tone. Like all things in this journey, there are trade-offs, and implantation brings new concerns about things like scoliosis and overdosing (which could be fatal). But, if I had the option, I would do a trial test of the medicine tomorrow to see if an implant would help. Unfortunately, we are still stuck without anyone to provide this service in Hawaii, and I don't know that this is feasible thing to be flying to the Mainland every three months to manage. Please pray that we could find a solution. Now that I've done my homework, and actually, now that I"ve received some clear guidance, I want Abbie to be comfortable and freer to move.

So, where we're at now is basically "I don't have a clue!!", but I am ever grateful to be holding the hand of One who knows exactly what He's doing. My thought is that if we are going to do the pump we should get that in place before the surgery. Then, we won't have to do the extra tendon release procedures and the recovery could go much better without her muscles always pulling on her hips. But, that is just Mom-Logic, I have no idea how that aligns with Surgeon-Reality. Plus, we would have to pull together a team to support us with the implant surgery and management afterwards. In any case, we've decided that it is worth giving Abbie a little extra time before the hip surgery in light of how rapidly her body is changing.

I have been relishing my family lately, thus the lapse in posts. We've had some more special things these last couple weeks that I will fit into the next update, including a very special visitor. I pray that you have a WONDERFUL time of thanksgiving this week with your families. The weight of my thoughts cannot be carried electronically, but please know how truly, deeply grateful we are for your prayers and companionship.

Ballerina Legs

Sometimes, at the end of a post I try to find a scripture that sums up where we are at or what I am feeling. This week, I found the verses before I knew the details of what I was going to write. On Wednesday I read Romans 8:24-25, and as it reverberated within me, anticipation to see how it was going to be animated in our life this week rose in my heart.

"For in hope we have been saved, but hope that is seen is not hope; for why does one hope for what he sees? But if we hope for what we do not see, with perseverance we wait eagerly for it." -- Romans 8:24-25

This was a good reminder to tend the fire of eagerness in my heart that can so often flicker and turn to embers. With Abbie's twice-yearly neurodevelopmental assessment coming up on Friday, I turned my hopeful thoughts toward that appointment, wondering if God was up to something.

At the beginning of the appointment we gave Linda, the neurodevelopmentalist, an update on how consistently we accomplished the program she gave us at the last appointment. As I was filling out this report I found myself repeatedly admitting, "was not able to accomplish due to tone until the last two weeks." I felt bad for having failed to be a good "program mom", but seeing the answers in writing made me realize that something has really changed in the last couple of weeks.

As usual, Linda was much more encouraging than disciplinary, understanding that our challenges were because of Abbie's tone. We talked at length about diet, supplements, activities and then the new treatments we are doing for the hypothyroidism. She was very interested in this, but once we got on the floor to work with Abbie, she became amazed.

Abbie's legs were soft, aligned properly, with good skin temperature even in her toes. When we laid her on her tummy she quickly fell asleep, and Linda said the words I was thinking, "Look at her...she could be any one of your children laying there...she looks absolutely normal." And she did! There was no hypertonicity in her muscles, no over-rotation in her legs, her ankles were soft and flexible...

Abbie did move up one level in two of the six areas of assessment, which surprised me given the limitations we've had. So, that was a blessing but not the thrill of the day. It was seeing Linda's face as she worked with Abbie, hearing her say over and over, "I am so, SO excited" and seeing my observations of Abbie validated by very knowledgeable eyes.

So, we have a new program with some very specific goals and it has been an absolute JOY to begin working with Abbie on it. When you are not struggling against the body it feels more like dancing than fighting -- and I have waited a very long time to dance with my girl!

It's almost hard to fathom the changes because they have happened so quickly. We went to therapy today and she did the best leg-bending ever -- and we weren't even working on her legs! Just to hold her soft little body is an exquisite luxury that might not be fully appreciated by mothers who've never had to hold slabs of steel or chunks of granite.

I was doing my Bible study tonight and was asked what portion of Daniel 5:1-9 struck me most. This selection is about a huge feast being thrown by the king of Babylon the very night that kingdom fell. There was much to choose from, but one word was neon to me..."Suddenly..." (5:5). Even after 3.5 years of this journey, it feels like God has shown up suddenly in our circumstances, and I am breathless with gratitude and anticipation.

Pure Light, Pure Joy

This Saturday Abbie went for her second excursion on the ocean with Pure Light, the organization that gets special needs people out in outrigger canoes. It was a brilliant day -- much more beautiful than the gray windyness of the first time she went. Kyle, who has paddled before, was able to join the crew in the boat when we took Abbie out. I was able to avoid weeping this time, but just barely! Abbie was so relaxed by the gentle rocking of the waves that she fell asleep for part of the trip.



The ocean literally washed away all the tension, worry, irritation, and just plain "yuk" that was built up inside me...perhaps I should become a mermaid!! We stopped for a while a distance from the shore, just to let Abbie take it all in. Kyle and some of the crew jumped in for a short swim, and I just tried to bottle up the serenity of the sea. As they paddled back, I watched the turquoise water run against the yellow ama and enjoyed the noiseless sound of the boat cutting through the waves.




I cannot say enough to convey the goodness and kindness of the Pure Light volunteers. After we'd gotten Abbie out of the boat, they took RJ, Matthew and our nurse's daughter, Kiana, out for a ride. This was truly a family day! Once we were all on the beach again we were treated to a delicious (or "ono") lunch and fellowship with many new friends.




One paddler came up and said, "Hey! There's Abbie...she's the one!!" He continued, "Her first time coming here was my first time as well. When I turned around to see you crying I thought, "Whoa! What did we do wrong? Why is she upset? But then you said something about you and Abbie being blessed, and I was hooked. It is in my heart now...I wouldn't miss this for anything!" OK, so that broke my "no tears" policy for the day, but it was well worth it!

All the volunteers promise that they get far more out of it than we do, but I just don't know how that is possible. Perhaps we should declare a tie and praise God for how He showers blessings on both the giver and receiver. We are sad that Abbie will miss the next two month because of her surgery, but if you have a special needs family member on Oahu, Pure Light meets every 3rd Saturday, 10am, at Kailua Beach park.

Our Shrinking Girl

I think Ray was a little envious of Dr. Mark Starr this past weekend. We've never met Dr. Starr, but I spent the whole weekend enthralled with his book, "Type 2 Hypothyroidism". I learned so much, and I am a little hesistant to try to share it for fear that by distilling it down to bite-sized pieces I will not give you an accurate or complete picture. His book is less than $15 and I would encourage you heartily to read it.

It did explain much about Abbie however, particularly the fact that she was hypothyroidic before she was ever injured. Much differently than Type I hypothyroidism, Type II occurs not at the thyroid gland necessarily but in the mitochondria (energy factories) of each cell, and is most often passed down through maternal lines. As I learned about how this condition presents itself I could clearly trace the route it had taken from my grandmother, to my mother, through me to Abbie.

We have begun to see some of the hoped-for early effects of starting Abbie on Armour Thyroid and iodine. Her face has begun to thin out, as have her lips. She is losing bulk around her thighs, and today the nurse asked if she'd lost weight because it has become much easier to get her on-the-verge-of-being-outgrown size 6 diapers on her. As the mucin that has infiltrated her connective tissues starts to leave her body, I think we will see a new "lean, mean Abbie machine." Another fantastic effect of the reduction of mucin has been much better breathing. It is not uncommon now for Abbie to be satting 100 on her own, even while on her tummy or asleep. That hasn't happened in over a year. Her muscle tone continues to improve, and she is doing her neurodevelopmental exercises better than she has in a very long time.

Today we got some new foot orthotics at Shriner's. While being fit for the right foot, Abbie did not like a certain way the orthotist moved her foot. She let us know loudly, with expression and first with crying then with a vocalizations -- she really let us have it. Newt has been making "shoes" for Abbie since right after her injury, and was very impressed with how much she has changed lately, both in communication and muscle tone. I love hearing people say that!

Right now I am studying the book of Daniel, and having been gaining SO much from each minute I spend there. There's so much I want to write, but I don't want to babble or overwhelm. Let me just share one point that flashed like a billboard for me today. In the story of the fiery furnace, Shadrach, Meshach and Abednego leave their fourth, divine companion in the blaze to emerge unburnished. I have known that story since preschool, but read with fresh eyes today that they did not even smell like smoke after their ordeal. Beth Moore (yes, her again...I bet that Houston girl doesn't even know she has a part-time residence in Hawaii!) drew the parallel to the fires we have to walk through by saying that we do not have to, in fact we should not, have a smoky aroma lingering upon us afterward. By the promises given in Isaiah 43:1-3, no one should even have the slightest hint that we've walked (or stumbled or crawled) through the flames. So that is how I am checking my spirit, my countenance, my attitude...am I wearing "Eau de Smoke" to let the world know of my light and temporary suffering, or do I smell fresh and new to let them know of my powerful, eternal God?

"But now, thus says the Lord, your creator, O Jacob,
And He who formed you, O Israel,
'Do not fear, for I have redeemed you,
I have called you by name; you are Mine!

When you pass through the waters, I will be with you;
And through the rivers, they will not overflow you
When you walk through the fire you will not be scorched,
Nor will the flames burn you.

For I am the Lord your God,
The Holy One of Israel, your Savior.."

--Isaiah 43:1-3a

An Official Warrior

Last Saturday the UH Warriors were in town, and as usual our family headed for Aloha Stadium...but this time Abbie was WITH us!! Kyle going to a birthday party left us with an extra ticket, so it was an easy decision about who should get it. All day I prayed for the weather to be good, and must admit I worried a little as Abbie and I sat in the van during tailgating to avoid the fat drops of rain.

Fortunately, the handicap seats just a few rows above our normal seats were open, so Abbie and I set up camp there. As I watched sheets of rain dance aross the field, I was surprised we weren't getting wet. I looked up to realize that the wind was blowing in just the right direction for the stadium to protect Abbie and I...actually it felt like God's hand, not a steel mammoth, but nonetheless, we stayed dry.

I kept trying to turn her head to watch the action on the field, but during the first quarter she was pretty much glued to the end zone. I thought perhaps, with all the commotion around us, she was just checking out. Think again, Silly Mommy! On the other side of the end zone were the Rainbow Dancers, with their choreographed moves and shiny pom poms...what little girl cares about sweaty boys when there is dancing to be watched??

This little girl who was just getting over a cold did not have to be suctioned, nor did she cough even once the whole time we were there. She was as content as she could be, even when it looked like she was inside a pup-tent made of yellow ponchos. As I sat there holding her hand I recalled what an oasis UH football games had been the year Abbie got hurt...our one escape from a brutal reality. Now, with her by me, I knew that I no longer needed an oasis because our reality is no longer brutal. What a joy it was to have my girl with me!!

At one point a woman named Michelle came up to say "She is just SO beautiful!!" I did admit my bias before I heartily agreed. We talked for a bit, then she continued out to get snacks. Upon her return she came up and thrust cash into my hand saying she wanted to help with Abbie's care expenses. I tried mightily to refuse, but then allowed the blessing to flow from her hand right into Abbie's, who was thrilled to hold "paper money!!" It overwhelms me when strangers pour love out so freely.

As for all the new things we have recently added..they do seem to be making a difference. One place that the myxedema, (swelling caused by excess mucin) affects is the lungs, one source called it "decreased pulmonary vitality." Now that Abbie has been on iodine and Armour thyroid for 8 days we are noting great changes in this area. Slowly, almost imperceptibly, over the last year Abbie has required more oxygen support. She used to never need it, then only when she was sick, then sometimes at night, to now needing it at some point almost every night. With the thyroid things on board she has been satting so well, even at night, which makes for better sleep for all of us. Her face has begun to slim down a little bit, as has her lower lip. I've decided that it droops over not only as a result of poor muscle tone, but also because it is just so big and heavy. As it has gotten smaller and able to stand up more, drooling has decreased significantly. She is not having any seizure/muscle spasm movements to her right any more. This matches what the family of another near-drowning survivor who recently started Tremal is seeing. I FINALLY got the book on Type 2 Hypothyroidism today after a month-long Amazon drama. I read portions of it during tonight's UH game to dilute the pain when they were struggling. I have learned so much already that I look forward to sharing in the near future.

As we tucked Abbie into bed the night of the football game, RJ asked if he could sleep with her. She indicated a vigorous "yes" before all the words were even out of his mouth. They fell asleep shoulder to shoulder, and even with her eyes peacefully closed she seemed to be smiling about the wonderful evening we had all shared....and she wasn't the only one.