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, January 21, 2011

a date for osteotomies.

Mimi called today. May 3 is the date for Sophie's surgery. osteotomies. both sides. man it will be really strange to hold her and carry her and see her with legs that dont flop open all the time. she will be able to sit on the potty without peeing out. she will be able to sit in a chair without me having to puah her legs together. her legs will be TOGETHER! that will be amazing. scary getting there but amazing when its done. of this I have no doubt. I dont know when after that we will be getting fixators but I bet she wont be able to scoot any more when her legs are forward. I could be wrong though. She is pretty resourceful!

Thursday, January 20, 2011

first PT

we had our first pt appt. Sophie was nervous. but it turned out ok. she is strong willed though and wants to play what she wants to play and play it her way rather than doing what Loretta(therapist) wants her to do. she is very content to ignore questions directed to her. we have to work on that! Anyways we will go twice a week to see Loretta for now. Some weeks it will have to be once a week due to scheduling of other things(like Philly week). I asked many questions and they all came down to one thing, core strength and not enough of it. so thats where we will start I guess. She still fusses a little about that right leg but no clue why. she isnt freaking out completely every time we touch it though so I guess thats an improvement. She was also totally ok with getting her into a chair and understands when I say we have a life to live until she gets fixators. and besides by the time she is done with fixators she will be covered under a different insurance so we can revisit the need for a new chair at that time. besides I cant even get a date for the first surgery(osteotomies) which will include 6 weeks casted, much less worry about when the heck we will get to fixators! meanwhile with 10 kids I have places to be and if I am there Sophie is there, thats how it works around here. she goes where I go. overall it was a good visit and she definitely wants to get OT in there too. so here we go on a roller coaster! there are two OTs and one I have worked with before and DONT LIKE so I am hoping it will work out to get the other one.

Wednesday, January 19, 2011

stiiiilllll waiting

waiting for pt to call back and schedule sophie. hoping to push for a chair at that appointment. she IS 5 and has never walked. no guarantee she will EVER walk. and is a long time from even trying.

which leads me to another wait. I keep waiting to hear about osteotomies for Soph. while I am not looking forward to it I want to get it out of the way! she isnt getting any younger you know! or lighter! so I ask at every appointment only to be told no we dont have a date yet. Last week I called the care coordinater she was supposed to call me back. she said she would talk to the doctor and find out. only she never called back at all. and I was busy and didnt get a chance to call HER back until yesterday. except she isnt in on tuesdays I guess, someone else called me to tell me that. today? no call. seriously I know there is only 2 OR in the place but how hard is it to get a surgery scheduled? even if they said in 4 months on date x I would be happy!just get it scheduled? its already been 4 months since we discussed it and they said they would work on scheduling it. GRRRR.

Ben is in short casts and initially his knees were sort of stuck in the casted position but they have stretched out and he is starting to stand again. hope walking comes soon for him. it would be great to have him mobile! he is standing more and more. initially walking took all his strength and I did all the "heavy lifting" so basically he completely leaned on me to take even one step. that is getting much less and I can hold his hand and walk next to him or he can hold the wall down the hall.

Sophie is in short casts too. she is not doing as well. she isnt pulling up on anything. she isnt really moving around very much. she complains of pain when we move one leg. I finally took her in for xrays she complained about it so much. they came up empty. but while she was distracted with a computer daddy pulled on her leg in the very way that causes pain and got what reaction? ZERO! none at all! no pain no complaints no grimace. nothing. so why she is crying every time I move her is beyond me.I have decided to suspend moving the leg for a day or two and give her time to forget. I will just completely ignore the facial grimace every time I pick her up. every time I put her down. I will do all the things we normally do without making any kind of fuss about her leg. hopefully in a day or two she will have forgotten that it "hurts" and get back to normal. I am disappointed that she is no longer trying to stand though. will have to mention to doc when we go for AFOs in early feb. of course another 6 weeks in casts if they ever schedule her will mean no standing anyways.

Saturday, January 8, 2011

another trip to philly

kids got short casts to hold their correction until their AFOs are ready. much screaming by sophie, as is the norm. Ben got black and sophie got pink. Ben got walking boots but so far he isnt walking. his knees are stiff from being bent in casts for so long. but they seem to be stretching out more all the time. When I pick him up I let his legs hang so the weight of his feet and legs gently pull stretching his knee backs. Still no date for osteotomy.

I asked about a chair for sophie as she is getting too big and too old to be in the stroller all the time(although she never complains about it) basically I was told that since she has upcoming fixators (at some unknown date in the future) that any chair fitted for her wouldnt work then and not to do anything. soon her little legs will be too long for the stroller. then what? 30 pounds is a lot of baby to carry around all the time. and she cant really even hold on. I am frustrated. I know that if you get an electric chair you cant get insurance to give you a manual. so I wanted only a manual so that later when she gets a power chair she will have that one to fall back on. and we dont have a really accessible house right now for her to use a power chair. but I cant get one because at some date in the future she will change? wth? Maybe at home we can try to get one. Start with pt locally and see if they will work with us to get a chair. We have met our deductible for the year so this is a good time to do it. and by the time she would be ready for a power chair way down the road we would have new insurance.

their feet are looking good. bens heel is still just a bit rolled under but they werent too concerned at this point. they said if in time it becomes a problem they can do surgery to fix it but it isnt really necessary at this point. it usually resolves itself OR isnt a problem for the person.