Haven’t been on in a while. Just got internet up and running again. Karly is doing well, yesterday he legs were casted from hip to toes to correct her bilateral clubbed feet. shes cruising furniture and doing very well at it. were in the process of figuring out how to get her a walker. ive been fighting ins. for a year for physical therapy and finally got the approval letter in the mail saturday!! but for the next 3 weeks she will have casts on her legs… her seizures went from about 3 a year to 40 a day for a few months starting in summer, we are now 29 days with no seizures now that she is on new meds 🙂  shes still non verbal but can sign (baby, more, no, up, bye bye, hi, uh oh, all done and a few more 😉 im glad ill actually be able to post and chat with other families this time since my husband got me a new computer 🙂 i cant wait to read everyones updates….. also, does anyone have advice on how to get the referral for a walker, i keep getting the run around, should i be asking her orthopaedic docs or primary doc? anywho, thanks for looking.

Kaylin mom to Karly

 

3 Responses to Karly Update

  1. Laurie says:

    I think the orthopaedic doc should be able to prescribe the walker…or the PT can tell you who can. It is great that she will be starting physical therapy~ I think it will make a huge difference for Karly. I cannot believe that you have had to fight for this service for your daughter~ that makes no sense at all! Kaylee’s therapist has been VERY proactive in helping me secure the supportive devices that she needs. She hooked me up with an orthotist to have Kaylee’s bi-lateral ankle supports cast, and she told me that she will be go with me to a NJ Special Needs Expo (some kind of exposition where there are vendors with lots of different equipment for kids with various needs) to help me find the best wheelchair/stroller and car seat for Kaylee. As far as who writes the scripts…my pediatrician wrote the one for her Bi-Lateral AFO’s, although I think she will need to see a different kind of ortho doctor for the walker….an orthoTRIST, maybe? Sorry I cannot be of better help, but I do think the PT will have some of the answers you are looking for. Best of luck!!

  2. cordillh says:

    With us, the PT recommended the walker, got the doctor to write a script for it, and then insurance paid for it. We started out with a Rifton gait trainer, it is heavy and not very portable. But the perfect size for Riley and has speed control which she needed. Now she is using a Nimbo by Winseltye independently and rather than waiting all the time to go through insurance, we bought this one on our own. I liked it and it was under $150 so I went ahead and ordered it online. It is the only one we use now, even after all the months of waiting we went through for the Rifton.

  3. Letty says:

    I think it’s wonderful that you’ve taught her to sign. What age did you start?

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