Tuesday, October 30, 2007

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.

Sunday, October 21, 2007

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.

Thursday, October 18, 2007

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

Thursday, October 11, 2007

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.