Lily’s appointment last month at KKI went pretty well. We talked to Dr. Suskauer about changing up Lily’s meds and treatment plan. We feel like we’ve been stuck in a rut with everything we’ve been doing and felt it was time for some changes. The first thing we’re doing is working on improving her gastro issues. We had an appointment with a local gastro specialist for March 25, but that appointment had to be postponed and we don’t have a new date yet. Hopefully, it won’t be too long until we can get in there. After we get the gastro issues figured out, we are going to make some med changes with the goal of helping Lily become more alert. Dr. S wants to possibly wean her off of 1 or 2 meds that may no longer be benefiting her, and adding something to make her more alert. We’re excited to try these new approaches and to see what changes we might see in Lily. We’re also looking for a dermatologist for her. She has always had eczema, but she has some rash-type patches on her face and we can’t figure out what it is. It looks like it might be eczema but we’re not sure. So, it’ll be off to another appointment! 🙂
We’ve also been talking to Lily’s current PT and the PT she had while at KKI in 2011 about getting a piece of equipment that will give Lily some more movement during the day. It dawned on me recently how little actual movement she gets now. She pretty much goes from chair, to stander, to bed, to chair, to stander, to bed. That’s it. We realized that she needs a way to get some movement to help with muscle tone and to keep her bones strong. We don’t have a lot of room in the house for another piece of equipment, but there are a couple of options we are exploring.
This is the RTS 3000. http://http://www.restorative-therapies.com/rt300-legarm
Lily would stay in her wheelchair and her legs would be attached to the pedals. It has electrodes that would attach to her legs to stimulate her muscles to do the work. It probably costs a zillion dollars. Lily would have to trial it a couple of times before we would ask for our insurance to cover it. The odds of it being covered are about 60%, with “alternative funding” available (aka, loans). But, we shall see.
Today was “book character” day at Lily’s school. She went as Julie from American Girl. 🙂 I pulled the outfit together in a rare stroke of creative genius, with a top and jeans Lily had already and a purple knit cap just like the one Julie wears on the cover of the boxed set. She looked so cute!
Today we had a meeting with some of Lily’s education team. Good news!! Lily will be moving over to Landis Run Intermediate School in the fall!! This means she will be in the 5th/6th grade building with her peers! The program and teacher they have in place sound great and we are very excited that Lily will be with friends her own age. Yay!!
Thank you again for the continued support and prayers! We love you all!