This blog is about our journey with Arthrogryposis(AMC). It is not just a walk in the park. Flying all over the country for medical treatments for our two kids. Therapies and surgeries. Not always fun but always necessary.

Friday, May 21, 2010


one more cast for ben. he now has afo and cast and is walking great. cant wait to see him in TWO afo and shoes. he will be great! you should see him take the front steps now. they arent that big and there are only two but there is no rail and he has gone from completely unable to navigate it and climbing down on his bottom, to walking up or down it no problem just like everyone else without even a wobble. I am always amazed at how far he has come.

Sophie's appt with Dr S didnt go so well. He says she has weakness in her shoulders and back and chest that she/we can work on and she CAN hold her arm out in space without letting it drop. so thats encouraging. but he didnt see a lot of hope for her legs. I just cant seem to understand. they can put a man on the moon but they cant undo a knee contracture? he said serial casting might work. he was willing to give it a try. he also thought she could have those hands rotated serial casting rather than surgery. but why cant anyone do anything about her legs? she has quads. we know that. all she needs is legs in the right position? I dont expect her to run any marathons. but is it too much to ask that she be able to transfer and walk a little within the house? this would go a long way towards helping her to be independent in life with self cares and living alone. We adore her but we want her to grow up and move out like all our other kids! she is so smart, I know she will want that too. but if she cant take care of herself how is that possible? after I get home with the girls and get settled maybe we will have to take a trip to philly. its our last shot.