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.

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.

hand doctor tomorrow. will see where that goes.

different doctor basically same speech.

tomorrow

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!

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.

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.