For the last month we have been weaning Sam off of his neck brace by adding time out of it at 4 day intervals. We finally made it to 8 hours a day out of the brace and today's follow up appointment. At this appointment we had a new set of flexion/extension x-rays taken. Let me take a moment to mention here that Sam still has significant loss in looking up, but he moved his chin within an inch or so of his chest. I was floored. This is way beyond anything I would have dared to hope. We were told to expect 95% loss of movement. We still have not tried any side to side. Still praying that Sam will have as much mobility as possible. But being able to look so far down will make a huge difference in his ability to walk without accident, take stairs with confidence and read comfortably.
Dr. Alden studied these new films to be certain that with the increased freedom from the brace that none of the hardware was loosening up. He showed us the x-rays and indicated that all of the screws were holding in place and that the plate was not shifting. This is the result we and the doctor had hoped for. Sam was then given permission to no longer wear his neck brace. (He had taken it off at 8 o'clock this morning, which allowed for him to still have it off at his afternoon appointment. He had said he had hoped he wouldn't have to put it back on at all. I am so pleased he was right!) We have one happy boy this evening.
The doctor was also able to show us a few other things on the x-rays that we have been waiting to see. You may recall me saying earlier that the titanium hardware was really only the temporary fix to fuse his neck. There was a bone graft placed during surgery and the hope is that it grows new, dense bone that solidifies the connection from his skull to his spine. This was the first set of films to show that there appears to be some increased bone growth along the bone graft they put in between his skull and his second cervical plate (C2). Dr. Alden said that a solid fusion in that area is the minimum we need for a successful result. So far it appears to be beginning that process. Furthermore, the doctor pointed out the size of the gap that is between the C2 and C3 plate. That gap is significantly smaller than it was after surgery. Having a complete solid bone there would make the fusion results that much better, and it appears also to be heading in that direction. Praising God!
Along with no longer having to wear the neck brace, Sam has been released to increase some of his activities. One of the things he was enjoying prior to his diagnosis was jogging. He has been restricted from it for several months now. Dr. Alden has given him permission to jog as he feels able. He can also begin to try swimming again, although I think this will take some "re-learning" with his lack of neck movement. He is thrilled to be able to run and try to keep up with his friends again. Pray for this mother that I might not be a nervous wreck and ruin his good time with constant cautioning.
Next step for us is another follow-up on January 30th. They will do another flexion/extension x-ray at that time to continue to monitor that no hardware is coming loose with increased activity. After that we will follow up again in March with a CT scan. This will give the doctor a more detailed and exact view of the bones and show how much healing and growth have taken place. We also have a sleep study and neurologist appointment in March. This sleep study will let us know if Sam is still having central apnea at night. We are cautiously hopeful that the surgery may have helped this condition, while at the same time remembering that the purpose of the surgery was not fixing existing damage, only preventing more catastrophic damage to Sam's brain. Please pray for God's will for all of these outcomes.
Thanks for all of your prayers on this journey. We have come so far, and I am so thankful for everything God has done for us. Awed and amazed, that's all I can say.
