Ryan playing in her "little room". He loves this thing!
Tuesday, June 10, 2014
Sorry about the super late post today (I've got to start getting to bed before midnight)! Reagan slept well last night and woke up super sweet and calm as a cucumber today. This morning we ran to the lab early to get some blood drawn for the EPI-743 study and for her endocrinologist. Reagan was perfect and the phlebotomist was great (which is good because they needed a lot of blood)! After we got back she had PT and did great with that. Then this afternoon her OT and the wheelchair guy came out and made a lot of adjustments to her wheelchair. Apparently my girl is growing...and so must her wheelchair. She was SO good for the entire process! All of the talking, getting her in and out of her chair twice, and making lots of adjustments while she was in it...she was such a trooper! They are going to "grow" her current wheelchair (which is only 2yrs old), which consists of ordering a new seating system, a new padded tray, as well as something to widen her frame. So far she has only been growing length wise, but eventually she'll need that extra width. We also discussed the need for a therapy/changing table and he mentioned the difficulty in getting those approved. Because insurance doesn't care about the caregiver's backs! The problem is, the heavier she gets, the more likelihood that someone will eventually drop her (scary)!! We're going to try our best to get one. We'll see how it goes. Despite giving Reagan a bath this afternoon, tonight I could smell "bad day smell" on her. Her temperature regulation is a bit off too (slightly sweaty back and cold hands and feet). Her last bad day was only 6 days ago, so it's way too soon to be headed in that direction. Please keep it in your prayers that she'll continue having good days.