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, April 28, 2010

I just found out there is a family in minneapolis and also of two families in St cloud(which is even closer and I go there often) who are affected by AMC. I think we should start a local support! I need it! surely others do!
bens foot in resting state was at 35 degrees. after one weeks casting it was at 22. It was casted again at 15 and will see how that goes. since we are having such great success we might do the other one too. he chose yellow for cast this week. he was a little scared of the cast cutter but did ok. being a sentimental mommy I kept his purple cast. I dont think I am going to keep them ALL! but hey it was his first! cant wait for sophie to see dr S in late may. hoping we can have some great results for her as well.

Friday, April 23, 2010

update of sorts

Ben had his first cast put on Weds. He picked purple as I knew he would. the kids loves poople. when he got to choose his afos at shriners he chose poople camo. and poople straps. he just likes poople. he is doing just fine with the cast. no problems at all, and it isnt slowing him down a bit.

We had an appointment with dr D in woodbury that shriners told us to see when the doctor at shriners wouldnt DO anything for her. but we couldnt coordinate with dr D to see him at Gillette. So we made an appointment with him in woodbury. which we later found out was his "adult office" and he didnt have a lot of support staff to talk about much with Sophie. So they said they would schedule us at gillette and we would bite the bullet and make the day work for us. I spoke with his nurse. I told her september would be perfect. While we did talk to him he was a bit misinformed and really not very encouraging. and he did wierd things with his hands to show us what arthrogryposis looks like. umm hello? do we not LOOK at her hands every single day that we dont know what AMC LOOKS like? Fast forward to today. I got a letter from Gillette with appointments for PT and PT evals and seating evaluation. I didnt know what that meant but at any rate the appointments were for may and july. so I called to change that and asked what seating means. she told me thats for wheelchair evaluation and we wouldnt likely get our chair until fall if appointment was in July. Why wont anyone give her a chance? and why should I pay hundreds of dollars to a doctor who has already decided that she needs a wheelchair? this is really difficult for me. She is very small for 4. and putting her in a chair to me says thats it we are done no one can do anything. I am not willing to believe that. I am not willing to give up on her.