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.

Wednesday, March 17, 2010

shriners hands

Saw Dr Moran today. Ben doesnt have to wear the splints anymore because he isnt wearing them anyways and is doing just fine and he is allergic to whatever its made of and after wearing one night needs a week or two off to clear the reaction. Needs to keep stretching those wrists and consider later tendon release so he can turn his hands furhter but that is optional.

Sophie needs osteotomy in her wrist and tendon transfer for her thumb and maybe elbow release. He said anytime we are ready. its 8 weeks in a cast and with pins in her wrist. umm yeah that sounds like something I want to do in MAY or JUNE! NOT. We have appointments again in September because I told him we didnt want to rush into anything this summer.

Tuesday, March 16, 2010

hand doctor tomorrow. will see where that goes.

Friday, March 5, 2010

different doctor basically same speech.

Wednesday, March 3, 2010


tomorrow we see dr D. wonder what he will say about Miss Sophie. Ilizarov? dynamic splinting? botox? serial casting? wheelchair? what? I guess as long as he isnt of the way of thinking that this is as good as its gets and why bother trying anything because it will just relapse. hoping good hopes. thinking good thinks. He has a reputation around the state and I have heard from several people we should see him. so I hope that means he has a clue. I just dont think I can handle ONE MORE DOCTOR who doesnt have a clue!