The day after meeting her we gave her a bath and as soon as she was topless and sitting I looked at her from behind, tilted my head to the side said "Hello, scoliosis".
Upon returning home and having chest x-rays, no one had to be an orthopedic to see the curve and know that it wasn't good. After 10 days at he hospital, dozens of x-rays and many residents and attendings weighing in on their opinion of her spine, I hardly knew what to think. Every single one said surgery someday, for sure. At the time I just decided to put it on a shelf and deal with it later. Which is what we did.
It's later now.
It's later now.
A few weeks ago we had a chiropractor weigh in. Having seen no x-rays, she could only speculate what the cause might be, but could obviously see her scoliosis and kyphosis. She noted that her gait, use of limbs and general movement seemed to be symmetrical; and she cautioned me to not rush into s surgical repair because many people live long active lives without a straight spine. I left feeling hopeful that *someone* had seen her spine and had not immediately said "oh someday she'll need surgery."
Today, we visited the Orthopedic clinic at Children's Hospital. First were standing x-rays of Grace's wonky little spine and she stood still like a pro. Quite a difference from our first x-ray with her 4 months ago when she was strapped down, screaming, and rather bluish grayish. I couldn't help but quietly thank God for the progress in her body both the physical and emotional. It's remarkable privilege to witness her growth in every way. When people ask me, "what's your favorite part of adoption?" - it's this. It's watching her progress and blossom and heal and grow.
We saw the images immediately, and as Robert and I looked them over I became instantly fearful. Just gripped with fear. You see, my brain is wired to go and visit the worst case scenario so that it's not a surprise if and when I ever actually go there for longer than a visit. Maybe you can relate. I had prepared to politely reject the surgical recommendation and respectfully decide to wait and see what her body does and how God might make her crooked places straight. I believe He can, and I'll be darned if impatience on my part or anyone's part puts her on an operating table before we see how God chooses to heal her spine. I had prepared to question the success rate of uncomfortable braces and weigh the possibility of potentially sleepless nights vs. a slim chance of some improvement. I had adequately prepared for every possible scenario that the doctor might deliver.
I had not prepared for what actually happened.
What actually happened was the doctor saying that she could just live with it. No surgery is necessary now and maybe not ever.
"huh?"
We learned that there is one congenital malformation in one vertebrae, a hemivertebrae. It didn't completely form. Where it should look like a rectangle, it appears as though there could be two small individual parts each with their own growth plates. We will know more after an MRI.
"huh?"
We learned that there is one congenital malformation in one vertebrae, a hemivertebrae. It didn't completely form. Where it should look like a rectangle, it appears as though there could be two small individual parts each with their own growth plates. We will know more after an MRI.
There is no brace that will fix this. There is no therapy, chiropractic adjustment, or exercises that will fix this or help it improve. That vertebrae changed the direction of everything above it, and everything below it. It may not even need fixing. She may not even need a surgical repair at all. The current degree of curve isn't even something they would surgically correct now or 12 years from now.
"say whaaaaaaaaat?"
That one vertebrae, that one anomaly caused the scoliosis and kyphosis and she was just born that way. Other than removing it (which is a potential step should things get worse rather than better, someday), we just wait. We just live.
We just live.
Oh, and the kyphosis (outward curve) initially a 28 degree curve in May is now an 18 degree curve.
"Ok so you're saying that in 4 months her kyphosis has improved 10 degrees. This variety of scoliosis is caused by the one thing there is no brace or treatment for, and *if* if gets worse it's a minor surgery to remove the naughty vertebrae and that's it?"
Correct.
"So she has a scoliosis and kyphosis that you won't brace or cut to fix. Pretty much the only kind you can't just brace or cut to fix."
That's right. She could very well live her whole life and be active and healthy and never have a single spinal surgery.
"Yes please, thank you."
As he left and Grace waved bye-bye I used my last drop of strength to fight back tears of relief and joy. I had been dreading the idea of bracing a very very willful toddler only to have *not enough* improvement after treatment. I had been dreading another surgery, this one involving her spine...her spinal cord...risks very different than cardiac surgery. Suddenly after months of preparing for scenarios I realized I hadn't prepared for every one.
This one.
Why is that? Because sometimes I look like something right out of the book of Exodus.
Dear Children of Israel,
I've wrongly judged you. I read story after story, time after time when you experienced God carrying you through hardship and trials. I read about your thirst being satisfied from water pouring out of a rock; your hunger being answered by manna falling from heaven. I've shaken my head at how you subsequently abandoned the God you saw meet your needs and answer your prayers over and over again. I've seen you try to handle things yourselves because God couldn't possibly have already handled it. I've wondered how-brainless-could-you-be to experience God the way you did and be so quick to forget how mighty He is. For crying out loud, He literally went before you and walked beside you and lead you in a pillar of fire by night and a cloud by day. Fear not, I judge you no longer.
Because I am just like you.
I've seen more than enough miracles. One should be enough, shouldn't it? I've watched orphans receive organs in a country where that never happens. I've seen the very living and breathing and beautifully spunky desire of my heart, against all odds, come home to live in my house and is now my daughter and is no-longer-critically-ill. I've seen mountainous obstacles reduced to nothing. I've seen lives changed in the most remarkable ways that can only be explained by a God who works miracles in people, and I've proclaimed that I believe nothing is impossible for Him. Yet, at the first or second sign of potential impending doom my default response is still: "oh no, what will I do", and then I talk myself into remembering what I've learned about God.
Hopefully it won't take me 40 years of wandering and re-learning lessons, no offense.
Sincerely,
Amy, A work in progress
"say whaaaaaaaaat?"
That one vertebrae, that one anomaly caused the scoliosis and kyphosis and she was just born that way. Other than removing it (which is a potential step should things get worse rather than better, someday), we just wait. We just live.
We just live.
Oh, and the kyphosis (outward curve) initially a 28 degree curve in May is now an 18 degree curve.
"Ok so you're saying that in 4 months her kyphosis has improved 10 degrees. This variety of scoliosis is caused by the one thing there is no brace or treatment for, and *if* if gets worse it's a minor surgery to remove the naughty vertebrae and that's it?"
Correct.
"So she has a scoliosis and kyphosis that you won't brace or cut to fix. Pretty much the only kind you can't just brace or cut to fix."
That's right. She could very well live her whole life and be active and healthy and never have a single spinal surgery.
"Yes please, thank you."
As he left and Grace waved bye-bye I used my last drop of strength to fight back tears of relief and joy. I had been dreading the idea of bracing a very very willful toddler only to have *not enough* improvement after treatment. I had been dreading another surgery, this one involving her spine...her spinal cord...risks very different than cardiac surgery. Suddenly after months of preparing for scenarios I realized I hadn't prepared for every one.
This one.
Why is that? Because sometimes I look like something right out of the book of Exodus.
Dear Children of Israel,
I've wrongly judged you. I read story after story, time after time when you experienced God carrying you through hardship and trials. I read about your thirst being satisfied from water pouring out of a rock; your hunger being answered by manna falling from heaven. I've shaken my head at how you subsequently abandoned the God you saw meet your needs and answer your prayers over and over again. I've seen you try to handle things yourselves because God couldn't possibly have already handled it. I've wondered how-brainless-could-you-be to experience God the way you did and be so quick to forget how mighty He is. For crying out loud, He literally went before you and walked beside you and lead you in a pillar of fire by night and a cloud by day. Fear not, I judge you no longer.
Because I am just like you.
I've seen more than enough miracles. One should be enough, shouldn't it? I've watched orphans receive organs in a country where that never happens. I've seen the very living and breathing and beautifully spunky desire of my heart, against all odds, come home to live in my house and is now my daughter and is no-longer-critically-ill. I've seen mountainous obstacles reduced to nothing. I've seen lives changed in the most remarkable ways that can only be explained by a God who works miracles in people, and I've proclaimed that I believe nothing is impossible for Him. Yet, at the first or second sign of potential impending doom my default response is still: "oh no, what will I do", and then I talk myself into remembering what I've learned about God.
Hopefully it won't take me 40 years of wandering and re-learning lessons, no offense.
Sincerely,
Amy, A work in progress
2 comments:
The amazing thing about miracles is how miraculous they are, isn't it? God is SO good!
I am so happy to hear about all Grace's miracles! Your posts give me so much hope. On September 2nd we had our gotcha day and our daughter Leah has been home since the 12th. Her SN is autistic features and while she has some issues, other times she is quite normal though delayed in some areas. When AGCI presented her as a referral, worry gripped my husband and I. What ifs eventually turned into what if God....instead. Thanks so much for reminding me yet again how God can move! I have experienced so many miracles in my life yet I still like you always go to the worse case scenario, so not what God wants us to do. So yes We here too are also a work in progress. But again, it's SO wonderful to read your posts and see your faith and how God is working in your whole families life! Your hope and overwhelming love for your daughter and older 2 is contagious! It makes so much difference to my family, your outlook on life! So Thank you!
Lisa and Family
Post a Comment