Posted: Mon Jun 02, 2014 1:47 pm
WOW! That is an amazing place and we are so grateful we went. We met with a team of 5 or 6 people, it was overwhelming but wonderful. The doctor/surgeon, the nurse, the dept. manager, the social worker, and some others. Of course they did a few things baby didn't like, but they were very detailed. They were impressed with the movement she has gotten back, and had only on major concern. Because the front chest muscles and elbow, wrist, hand etc are doing great, but the back muscle is the concern. The front muscles have kind of taken over and they are concerned that the back shoulder muscle may not recuperate. We have new therapy to due, shoulder taping and then go back in three months. When we discussed what would happen in three months, they were able to work all the possibilities into one visit over two days and made sure insurance would cover everything with no preauth issues. The plan is to have an eval on Tuesday, then if things are not significantly improved, we go in Wednesday for a night cast and botox injections. They told us that her shoulder could dislocate if we did not do the new therapy and make this plan. I'm so glad we didn't "wait and come back in 3 months" like the local surgeon suggested. We could be in worse trouble. We are working on trying to find flights for the next trip. We drove 8 hours there, then 10 hours back because of rain. It's too much stress. Oh, the hospital also set us up with the "family to family" connection; this is where a family who has a child with this condition calls and talks to you about their experience so you have both the good and bad together. It really helped my daughter feel better about the decision to go to Cincinnati and to be able to talk to an actual patient family from that hospital. So relieved. More as we continue.