Arthrogryposis - Sheldon Hall Syndrome
It has been ages since I was last on DS. In the past year Robyn has been through 4 major surgeries and faces another one in Feb. (She has both hands fixed with great success and more work done on her feet and then her frame placed on) She is currently in an Ilizarov Frame on her left leg to straighten out her knee. She has been continually casted on her right. I'm about fed up with her right foot and ready to say, let's just slap an AFO on that puppy and deal with it in another year. If our Drs do surgery to correct her foot now there is an 80% relapse rate and she will have to go through it all again. But she can't stay casted for another year. She has been casted since she was 4 days old for peet's sake! There is not telling of her left leg will relapse since he has never done this surgery/frame on a kid this young. We decided to do it now because the bones were starting to deform from the tendons pulling on them.
Robyn is only 2 1/2 now and most likely won't be walking until she is 4 at the earliest. She HATES her wheelchair, she is scared of it. We have a new PT starting in March and I hope this person will be as good as our last one.
Anyway, any other AMCers out there?????
Loving my Sailor
AP, signing Mama to Morwenna and Robyn (AMC/ Sheldon Hall Syndrome)
, doggie Mama to BMD Jesse and BMD Annabella. As crunchy as an organic oatmeal-raisin cookie