I worry a bit about the other 2 boys. I wish they had something they were really interested in or really wanted to do. They have smaller interests but it seems like so much of our lives revolve around either the girls and all their needs and appts. and Mackenna and his busy soccer schedule and sheep. I feel bad. I feel like I am letting them down somehow or not connecting with them as I should. Ember continues to just be a joy to have in the family. She is getting so chatty. She can have these big serious conversations that we can not understand - but boy she sure trys! I'm glad the girls have each other. I do think they will help push each other as well as help each other. They are both so amazing and I think they are amazing.
Friday, May 11, 2012
A visit to Shriners Children's Hospital
Ember and I just returned from a trip to Shriners. It had been 6 mos. since her last visit so she was due back. As always I get excited about the possibilities of these visits. I can't wait to hear from the drs. how well Ember is doing, how much progress she has made, and most importantly what we (they) will be able to do to help her even more. I came away from Ember's appointments feeling so frustrated. Let me re-cap her visits. First we met with Dr. VanBosse. He is the reason we travel all the way to Philadelphia. Among many in the arthrogryposis community he is considered THE "go to" dr. for lower extremities. I have been very satisfied with him. I trust his opinions on the path for Ember. He has always remained optimistic that Ember will walk. He seems to have a good balance between just enough medical intervention vs. not enough. His plan for Ember is to schedule anterior hip release surgery as soon as they have a place on the schedule. This will likely be several months out - maybe as many as 8 mos. He is a popular surgeon and in great demand. This surgery should allow Ember better control of keeping her legs underneath her instead of wanting to pull out to the sides. Her hips have quite a few contractures. She will probably need surgery on her rt. knee as well but we'll address that next year. In the meantime we will get our 2nd opinion here locally but I see us still staying with Dr. VanBosse.