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.

Thursday, February 25, 2010

bens feet

bens feet are relapsing. his shriners AFOS were too big. they were hurting him and his feet were sloshing around in them. now we have an appointment for new afos but I wonder whats the point? its our dime this time and if he is going to have to fix those feet and then get MORE afos why bother now? Not sure what to do. he doesnt even yet have a doctor to tell about the problem. for comparison his feet then and now.

Tuesday, February 9, 2010

another wall

so we have to give up on Shriners Minneapolis. The hand doctor is there but one day a month and its ALWAYS a wednesday. Which is Eric's call day and impossible to get off. We also were not thrilled with the lowers doctor. and he is only there Wednesdays too. so while we do have an appt for Sophie with Dr Dahl in early March I started calling around looking for someone in this area(yeah right) who might be familiar with AMC. I called a midmn CP place just looking for guidance. three transfers later and still no one knows what AMC is. this doesnt look good. They did offer to send me some helpful info and put me on their mailing list even if they didnt know what AMC is. they referred me to another place. I called there. first scheduling answers but doesnt know what the heck I am talking about so sends me to someone else. after waiting on hold forever she said wait whats it called ? uhh gee I dont know, I will send you to the nurse she can help you. nurse....uhh I have never heard of that. I will have to ask the doctor and of course he is not in this week. I will have to call you back. seriously how can it be this hard just to find doc/rehab?

Sophie wants to walk so bad. she is so close to crawling. not the traditional crawl but her own way. kind of like a little dolly, she swivels at the hips to push one leg forward. she is just too nervous to do it herself. She likes to use the little step stool and get herself over it hands on one side knees on the other and hold herself up. she cant go anywhere but she gains strenth and confidence in doing it. I feel very helpless and worst of all CLUELESS as to what to do for her to help her. Shriners said no amount of ROM is going to help those legs. so they didnt give us any exercises to do. She cries when I do her arms. I dont think it hurts her. I only push it till there is resistance and then apply gentle pressure to keep it there. but she fights back and pushes her arms OUT at me when I am trying to pull them up from the elbows. He foot is regressing badly. I can only imagine how bad it would be if we put on the afos they gave her at shriners. while they are cute they do not have flat feet! She cries when I put on her AFOs. I cant NOT do the exercises or afos and splints but I cant do them either. and no one to ask because they have no doctor for their AMC. Ben I worry less about because he is mobile. his feet are messed up but he functions. Sophie cant even cover herself with a blanket when shes cold at night. she cant feed herself or wiper her hiney. She cant walk and cant play out in the snow because I cant find boots that will go over her rigid feet and her thumbs cant go in mittens anyways. At least she is starting to find ways to sit herself up after she turns turtle. I am feeling like I am failing her.