The Brace Comes Off........News for the Future.

Today we went back to Children's for Emma's post operation 6 week follow up. She was so ready to take off her brace and was nervous and excitied to see the Doctor in anticipation of her freedom.
When we arrived there, she had her usual x-ray and then we waited to see the surgeon. While we were waiting in the room the assisting physician from Emma's surgery came in to see Emma and asked her a few questions while he viewed her X-rays. He said that the surgery site looked good and that her fusion seemed to be healing well. He pointed out though that he would like Emma's surgeon to have a look at the region where the fusion joins the next section of spine because there seemed to be a lack of alignment there. It was to my eye evidant on the X-ray. The Surgeon did confirm that her c1-c4 vertebra where they did the fusion looked great and he was really happy with the safety in that region now. He did say.."I am however, concerned about the part below the fusion." He went on to examine Emma and said that the brace has maybe been a bit of a problem causing Emma to lean forward from the base of the fusion up, causing a misalignment with the c5 and following. He said that she must no longer wear the brace and even said that he was going to keep it but Emma said she wanted to keep it. So, he let her with the promise that she would not put it back on again. He is hopeful that the misalignment will correct itself if she is careful to sit and stand straight with her chin up to strengthen her neck muscles which he hopes in turn will pull the fused part of her spine back. She is to go back to see him Feb.3rd in hopes that taking the brace off and strengthening those muscles will work, otherwise the prognosis looks like she will be heading back to the OR to fix this additional problem. The concern is that her spinal chord is again squished (only lower but as a result of what was already done.) While Emma was sad to hear of this possibility we are optimistic that it will work and glad to know that the critical part of her spine is safe. The Dr. explained today that had Emma suffered an injury to her neck at the base of her skull where her severe stenosis was....she would have died as it was above her breathing centre.
If you have seen Emma since her surgery you probably have noticed that she appears more crooked than she was before and this sadly is the case. She will remain this way. I also asked about Physio but the surgeon said that he doesn't want Physio touching her neck. In one of my Pre-OP posts I mentioned that is was thought that Emma would lose 50% motion up and down and side to side in her neck. This in fact has not really been the case. Her loss here is far greater. She may have lost only 50% up and down but has lost 100% to the right and I'm guessing 65-75% on the left. She has to turn her whole body to look left and right.
The Surgeon also indicated today that we may have some other issues to deal with in the future. He suspects that she will become more twisted as she grows. She has a scoliosis curve in her lower neck that connects to an opposite curve just below where the neck and chest meet and should these get worse as she grows they may need to be repaired. It seems that our spine journey continues but we are thankful to have such a fragile and vital part of Emma's spine repaired.
So,.......Today was bitter sweet for Emma. She was dying to fling that brace off, take a shower by herself, and I told her that she could choose our celebratory dinner tonight. But , she also had a good cry on the way home knowing that she may have to head back to surgery sometime in the near future. I reminded her about what God says in the Bible about not worrying about tomorrow, for each day has enough trouble of it' s own. ( Corinna' s paraphrase.)I know how hard that is to do though. For now, we will enjoy the joy of Christmas as we celebrate the birth of our Lord and Savior! We will continue to entrust Emma to the care of that same Lord for we know that all good and perfect gifts come from Him. He truly has kept her until this time. We feel incredibly blessed!
On another note..... Emma went straight from the hospital to her home school school where she found out that she had all A's and 2B's. Not bad for a kid who had a major cervical spine surgery this term. Amazing!
Thank you all again for your prayers for Emma and our family. Please pray that her not wearing the brace and strengthening those neck muscles helps to put her neck back in place.
We are so greatful for our friends and family and all of your support and prayers.
Blessings, C.