Today we were back to see Emma's surgeons after seeing them only one month ago on Dec.16th. They were at that time concerned about the misalignment of the fused part of her spine with the rest of it. We didn't know it at the time but the degree of misalignment in December was 50 degrees which is quite significant putting her spinal chord again in a compromised position. The Dr's were hoping that after a month out of her brace that they would see some improvement in her alignment as her muscles strengthened.
When we arrived today Emma had some more xrays to see if there was any progress. Karys was with us today (Isaiah and Naomi were both at their day program today.) and provided plenty of entertainment for us and the staff as we waited to see the Surgeons. After looking at her xrays they determined that her alignment problem has improved some...from 50 to 32 degrees. This was promising news but not quite enough for the Dr. He explained that her spine is still at risk of injury as before and that she may not resume any sports or the like. (the surgeon who actually did the surgery was not there but there are only 2 pediatric spine surgeons in all of BC and it was his partner that we spoke to today and at our last visit. He is also the one who originally saw Emma. ) As we were looking at her xray he explained that the 3 or 4 vertebra under the fusion are naturally as part of Emma's congenital deformity fused to each other and that left a "hinge" of motion between her surgical fusion and her natural one which is contributing to her alignment issue. I had been thinking after our last visit that they should have maybe fused all of these parts together during her surgery eliminating the "hinge" so I asked the surgeon today about why they didn't do that. He told me that this is one of those things that the two of them (the surgeons) argue about before a surgery like this. They were not really in agreement it seemed but went with the chance that she would be able to keep some mobility in her neck hoping that the problem that developed would not occur. He also said that there isn't another Emma by which to judge these things but in retrospect.....he also said that is why Dr.'s from around the world (Emma's assisting surgeon is from Australia and has been at all her appointments since the surgery.He is a wonderful dr. and will make a fantastic pediatric spine surgeon. Great bedside manner.) come to watch and learn from the two of them. To hopefully do something different should this occur in their practice back home.
The surgeon that we saw today would like to fix this problem with surgery but has said that he would like to wait a little longer due to the twisting that is progressing a little further down. He said the options were to operate in like 3 months and then again in a year for her upper thorasic spine curve and then operate likely one more time a year or two later to fix a lower problem. He suspects that her curves will continue to progress to a point that won't be comfortable at all for Emma as she goes through puberty. Or........the preferable option is that he put it off as long as possible so that she has done some more of her growing so that they can combine all of these corrections at once. He said that her chest deformity will be corrected as well with this surgery and once it is done she will be much straighter afterward including her head. (it is kind of cocked to one side.) She will however then be completely fused and will lose most of her motion in these areas. She is ok with this and truly could care less about the motion already lost. This is the least of her worries. She has just adatped.
We left today feeling hopeful and encouraged. No tears this time and before our customary trip to the hospital Starbucks we went to visit a friend Sofia, from church who is at Children's for a while. It was great to have a little visit with her.
Emma will see one of the surgeons again in two months for another assessment to make sure that she can keep waiting. We should have an update then.
We continue to rest in the fact that God made Emma just as she is and that nothing happens by accident apart from God's purposes and that He has a reason for all that He has done if no other than to glorify Himself. This gives us great comfort.
Psalm 139:13-16
"For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was make in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be."
God has a plan here with Emma and with each of us. Not one day comes to pass apart from God's purposes including the knitting together of Emma's unique anatamy in my womb.God made her as she is for a purpose and that is the most comforting truth.
Isaiah 46:9-11
"Remember the former things, those of long ago; I am God, and there is no other;I am God , and there is none like me. I make known the end from the beginning, from ancient times , what is still to come. I say: My purpose will stand, and I will do all that I please. From the east I summon a bird of prey; from a far-off land , a man to fulfill my purpose. What I have said, that will I bring about; what I have planned, that will I do.
We are trusting that God is God and He will do what he has purposed to do. For our good and His glory.
Thank you all so much for your prayers and love for Emma and our family. May God bless you.
