Starting with the easiest....
Madi is doing great and is on track like an 11 month old. This is amazing because she is really only 9 months old size and developmentally. The doctor feels like we should continue with OT for feeding therapy but she agrees that we, at this time, do not need PT.
Brody needs braces for his legs to stabilize his legs and ankles. He is very unorganized while standing and has very low muscle tone. She did say that he could very well out grow the low muscle tone and actually go to very high muscle tone which would be an issue. This is different from what we've been told because therapists have told us he would probably always be low toned. She believes that he should be receiving therapy twice a week instead of just once and also should be in Speech ASAP. We are currently on a waiting list with Texas Children's for speech. She also thinks once his vision issues are corrected a lot of things will be easier for him.
Gracie has several things going on. One is she does not qualify for Botox treatments. The issue in the one leg has nothing to do with the muscles in her leg but everything to do with the fact that the nerves, ligaments, and skin is not long enough. The Orthopedic was fairly certain that we would have to do surgery to fix this and a skin graft but thought that was not the main issue. The PM&R doc also believes that a lot of the issues Gracie has is from her stay in the womb- not being able to move around and stretch like the other two could. The doctor will be contacting our Orthopedic to discuss her findings and told me she does not want to increase therapies until her surgery is complete and she has recovered. This means we are looking at a major surgery in our very near future. There are some other things she said but I really can't remember it all right now.
The surgery Gracie will face is very detailed. They will not know how much they need to release until they are in there and a Plastic Surgeon will also be working beside the Orthopedic for the skin graft. I've been told the recovery is long and hard. The band they will be cutting contacts from the bottom of your butt to the heal of your foot.
That's all for now.
Krista
