KAFOs and PT

   When we got back from Delaware in December, I made a phone call to our local physical therapy (PT) office to get Emma on the books. I had gotten a referral, from Colleen, Dr. Mackenzie's assistant, but the soonest availability they had for a PT evaluation was in four months!! This is another reason why Emma probably has so many physical delays; everything takes so long. But I booked it for March. 

   Finally, March 9th came around and we met with Juliet for the evaluation. I was able to call Colleen during the appointment and have her talk to Juliet because she had some questions about what all Emma was allowed to do, such as how much weight bearing (standing in her splints), etc.  At the end of the appointment she talked to us about getting Emma fitted for a wheelchair and a gait trainer. I was hesitant to hear her talking about the wheelchair because that sounds like the opposite of learning how to walk. But she and Michael reminded me that with her learning something so new that takes a lot of effort and muscle, she can get tired really quickly (especially with only one lung now) and having her be in a wheelchair instead of sitting on the floor will make her more independent when moving around.

   After meeting with the referred orthopedist in Riverview (North of Sarasota) who had previously studied with Dr. Mackenzie, he wrote Emma a script to get KAFOs: knee ankle foot orthosis. These are a more advanced version of the AFOs Emma had when we were in Orlando. When I talk to people about the new KAFOs, I often refer to them as "fancy Forrest Gump leg braces". (And one day she'll run right out of hers too! *inspirational music plays*)

   We had an appointment with West Coast Brace and Limb (the company that would make Emma's KAFOs) on February 22nd, but that turned out to be just an evaluation. When we went back the next time on March 11th they made casts of her legs. She earned the nickname "Wiggle Foot". Emma didn't like having her legs held down, but the two girls, both named Danielle, were really sweet with her.

  On March 31st, we went back to get the KAFOs fitted. That appointment took two hours because they had to keep adjusting them on the sides and also cut a few inches off the ends of the toes since her feet are short. It was so fun to see her standing. She looked so good. They told us that she needed to get the proper size shoes in order to be able to walk since the bottom of the KAFOs didn't have any traction. Michael's mom was with us this day because it was when we were getting moved into the hotel.

  The following Monday (earlier this week) I called Juliet back at physical therapy to let her know that we still had not been contacted by anyone about Emma's wheelchair or gait trainer. On Wednesday I got a call from someone saying that that company New Motion (?) could see us, and it was scheduled a month out. Juliet already told us that she doesn't have any openings, but that another therapist named Greta should have a few spots available. I'm waiting for Greta to call me back next week when she is in the office again. 

  Michael has put the KAFOs on Emma a few times this week in the hotel and had her take a few steps (we were moving her legs for her) on a yoga mat, which provides the traction needed on the bottom of the foot. He also was able to get her to stand up and balance partially on her own for several seconds at a time. She makes it look very comfortable and natural!!