So all month we counted down the days when we were to meet with the boys neurosurgeon and get the words we had been waiting to hear, “okay we can take the collars off”. Well that day came and the words never did. Instead we heard “well, the fusions have been reabsorbed and we will have to go back in and refuse.” I was alone with the boys and boy was this a time I wish Matt was there. I though it was going to be a basic quick appointment. There was a lot of pauses and some questions. Jack’s fusion is gone. The transplant bone did not get the red blood cells it needed to grow so turned into complete calcium and consumed by the other bones. Hunter is the same but has a small fusion still remaining. With Jack they are looking to fuse down a few more vertebrates to C5 and he will be in a halo. Hunter looks like they want to just add some more bone and get him something more stable then the collar but not as severe as the halo. Hunter not being as bad as Jack is going to wait a few months till his re-fusion. Jack has a ct on January 24th and not sure when the re-fusion is. They were thinking end of January beginning of February. So needless to say 2011 is not starting on the upside of our medical chaos. Kinda funny to think that we only recieved this diagnosis 6 months ago. It seems like years. I hope in the new year to keep up on giving up dates for you all that try to stay in touch with how the boys are doing. Sometimes, like now, I am at a loss of words when explaining to you what is going on. It sometimes is hard to explain the life changing 20 minute appointments we get like we did on the 23rd. We were hoping to start this new year with working on more orthopedic issues like hips and have the feeling of moving on to a new area but unfortunately we have to again take care of this one. Thank you for staying in touch and please keep checking in, in new year for some hopefully better news.
Wow, sorry for the rambling and kinda quick answer to our latest appointment. I hope to have more information for you in a couple of weeks.