July 14, 2016
Check up appointment.
Her CT scan showed that she has a big clump its fused in the back only and not the front. Her spine is also fused tho, which he was really hoping that it wouldn't be. He is going to a conference to present her case to 200 people to see what their thoughts would be on how to proceed with her and what would be best. He is thinking of having the back part of her upper ribs float which he will do on her next surgery when he goes in to expand. He said he had a lot of studying to do with her case cause she is very complicated and will call me when he figures things out. Her next expansions will be worse then the ones before because he will have to cut her bigger, the VEPTR is just bigger equipment then the rod that was used. The expansions will still be one day surgery tho just more painful. He also said not to put her in activities that we will have to take away later on, he believes that he will be working on her til she is 15 years old. He is not sure exactly how much he will work on her and how much will be done exactly but thinks it will be that long. He is very impressed with how well that she heals tho. He said that with her spine being fused it definitely is worse and he is not sure how they will separate that but when they do they will have to put cement or figure something out to put in between so that they will not fuse back together. Right now everything is pretty soft and when she is about 5 it will all turn into bone and will be a lot harder to get through to separate everything so hopefully they can get it all apart before that happens. So right now we just wait to see what s going to happen after the conference and he figures out what he will do next. The next surgery he will not being doing her spine tho he thinks that that will happen in 6-12 months.

This is her x-ray that was taken today.