If our ped had listened to me months ago, we could have already gotten this show on the road and she could possibly be walking. I am soooo MAD. That's a story for another day. So we had our initial appt, then our 1st PT appt this past Monday. She watched her play, stand up etc and determined she would need braces. She will get 1 for each leg. Her right foot, the least affected will get a AFO and her left one, will get a KAFO ( I think....) on the site she gave me, it really doesn't connect to the knee, but it has a piece that comes up the back/sides to help her from hyper-extending her knee apparently.
She did say that she didn't think she would need any other type of assist devices and she may not always need the braces but for now until her muscles strengthened she would. We are doing PT for the next 3 weeks and then in Aug, once a month. They showed us some stretches to do with her and also correct her "W" sitting as she does quite often.
Our PT will be back on Mon, to measure her for her braces. I am kinda sad but I am glad we have an answer and a plan. We go back to UAB in Oct for a clinic day (first one) and see 4 drs, plus she'll have her renal ultrasound recheck and a urodynamics as well.
Just wanted to update, since it's been awhile. She's doing amazingly well outside of the not walking and honestly I wasn't worried if she would be a late walker, but worried about her ankle/leg weakness. I am very irritated our ped wouldn't listen and he'll get an ear full from me soon.
