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, 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.

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