Eve finally got her new AFOs (ankle foot orthotics). Her old ones are almost a year old and she has outgrown them. We have been waiting to get her new AFO's so she can use her stander and gait trainer again. We went for her casting in the middle of October. I'm not sure why, but it took 7 weeks to complete them (in Georgia it would take 2 weeks). We picked them up on Thursday. I'm not exactly thrilled with the results. They aren't as nice as her old ones. Her old ones (the pink ones in the picture below) had two parts and were molded better to her feet.
If you look at the toes, the pink ones have cushioning that fits under her toes. The new ones (blue) do not.
In addition, this new person who fitted Eve, did not trim the excess plastic at the toe of the AFO "so she'll fit in them longer." Well, that means we need to get shoes that are huge so they fit the AFOs and Eve ends up with sneakers like swimming flippers. *sigh* I just don't know. We put them on her and put her in the gait trainer. She couldn't really move in them. I think because she lost the flexibility to move her ankles and actually walk. We took off the AFO's and just put on her regular shoes and she went like gangbusters. I'm going to have to talk to her PT to see what she recommends. We're going to send in the gait trainer and stander to school. I think partly I am disappointed in the service (the length of time, and the quality). I think partly I am worried that I didn't make sure she got the proper AFO's (by bringing the old and specifically asking for Cascade DAFOs). I should have demanded that the guy trim the toes. (In GA, they would always start out with a long toe, and then file it down and contour it around the shape of her toes). I did ask him why there is just a thin strap on the top of her foot when her old one had a larger pad, and he said that the ankle strap is what's important to keep the foot in, and to let the shoe keep the top of the foot and toes down. I don't know. My gut is just not satisfied, but I don't know if I am expecting too much. I also don't know how much she truly needs to wear them. She really doesn't weight-bear too much anyhow. She locks her knees and then when she gets tired, she sits on the saddle in the gait trainer, or the brace of the stander.
I think I am also so crazy busy that I don't have the time (or the energy) to go back down there and ask him to fix it. I also don't know if they are good enough for now, and the next pair she needs I should just insist on getting DAFO's (like her old ones). Maybe once the semester is over for me (in 2 weeks), I'll have more time.
1 comment:
I hear your frustration and concerns. You are doing a fantastic job Duchess and your concerns are very valid. The important piece of what you said was, "I don't know if I am expecting too much..." She is your daughter and you need to advocate for her 24/7. If you feel things are not right, then get in people's faces and say so. I know its a lot of work - I truly wish I could help - but you and Jim are the only ones who can advocate for Eve. However, don't get bogged down thinking you have to do everything at once. Get the semester over, and do what you can. We love you! Love and Hugs. xoxox
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