Casey and I are trying to take advantage of this week being a slow one as the next few weeks to follow are going to be very busy for us. Casey’s new PT started this week. I like the new one a lot. She jumped right in and started working on plans for Casey’s legs and arms. I think we are going to get a lot more out of this PT than the last one. The last one did show me some good excercises to do for neck and head support that Casey and I will still work on, but she just wasn’t comfortable working with Casey’s legs.
Sometime in October an OT from Westside Region is supposed to come out and do an eval and then from that point on we should be getting weekly if not more OT sessions as well. Anyone who is wondering what OT vs PT is I will tell you what I have been told. PT focuses on the larger muscle groups where OT will focus on the smaller ones. So PT will work on Casey’s legs, arms, trunk, etc and OT will work on hand, toes, mouth and other smaller muscles. The 2 will cross over some, but we need both very much.
No doctor appointments for Casey this week. She had her GJ removed and a new G placed on Friday and so the next GI will be Wednesday next week.
While she and I were at the clinic last week I saw a posting for a research project they are doing for female caregivers with seriously ill children. I called and qualified so I am participating in a research project now. I have to answer lots of questions, get an MRI and collect urine. Nothing major, but it will pay $225. I told Tim I will become alab rat to earn my keep 🙂
Next week we have lots going on. Tuesday Casey has an appointment with her ped. She needs to check in and be sure she is in good health before the doctor will sign off for the ear tube procedure the following week. Also on Tuesday we will be going for our initial HBOT appointment. It won’t be the sessions, but just meeting the doctor and going over procedure, cost, expectations, etc. Then we have PT and Tim is FINALLY going to get allergy tests started. On Wednesday we have the CP clinic that they say is about 3 hours, followed by an appointment for my research project, then Casey will have GI clinic in the afternoon. As long as we get the go ahead during CP clinic we will go back on Thursday to start Casey on botox injections. Then PT again on Friday. A very busy week for our little pumpkin.
Still no updates on feedings. We are still at 22 an hour, and reflux is still an issue. We have been tryng some new medications that we had hoped were going to help get her bowels moving and process the volume a little faster so she could take more, but so far none of them have seemed to help. The first one just knocked her out and the second one just made her sucretions really bad.
Tim and I have a date on Saturday, respit care is a really good thing. We both hate leaving Casey, but it is really good for us to get out every now and then. We will post something late next week after all of the appointments are over.