First off, we finally confirmed surgery dates for next week. We will go in sometime between 6am and noon on Aug 24 to begin traction.
Best case scenario to prayer for: That traction alone will be work amazingly well and without a doubt will work for the long term. And that he will have such good response post-hospital he we be in the halo brace for the shortest amount of time possible. There is more detailed information and some background below.
The goal of traction is to reduce how much his first vertebrae is out of line. For years we (and the doctors) thought his neck tilt was due to muscle issues because the skeletal issues didn’t show up on x-rays. As we prepared to do another muscle surgery (to loosen the overly tight neck muscle) the new doctor wanted to do a CT and MRI to confirm it wasn’t skeletal. Well, it turns out it is skeletal. His C1 (1st vertebrae) and C2 (2nd vertebrae) look as though they have melted. They may have been that way since he was born. It was that way when we met him at 2 years old. Although there is little chance of it working, we hope traction (along with muscle relaxers) will be enough to straighten his spine.
If traction doesn’t work, he will go into surgery (Aug 29) to have his vertebrae fused. This will mean a lifetime of less mobility, but an improvement from his current state.
Either way, he will be leaving the hospital with a halo brace for a minimum of 3 months. While in the halo, he can’t run, jump, rough-house, climb, and he absolutely can’t fall. He won’t be able to look down or side to side without moving his entire body. It will feel like forever to him. Although it is super sad, and going to be hard on him, we ask that you don’t say “poor baby” (or the like) to him. Instead, say things like “man, that’s terrible; but you’re such a strong kid” or “this is hard, but you can do this”.