Thursday, April 3, 2008
Reagan had a good night last night. She went to bed around 10pm and didn't wake up until right before 3am. Again...almost 5 hours...we're pretty thrilled about that. An ECI physical therapist came by today but Reagan was NOT cooperating! She worked with her for a few minutes and she'd start crying, I'd finally calm her down and we'd try again and same thing. Then the doctor's office called towards the end of the session and we just cut it short. I hate that, especially since she's getting so tight in her legs, she really needs this therapy! The nice thing about the therapy through ECI is convenience...they come out to your house, which is great because Reagan usually cries in the car. The bad thing is they only come once a week, are always short staffed, and cancel often. I can't wait for her to be well enough to go back to private therapy. There she gets PT twice a week and OT twice a week and they almost always work with her the full hour. So the call that I got during the therapy session was from the dietitian in the epilepsy clinic calling to talk to me about Reagan starting the Ketogenic Diet. When we spoke to the doctor at her appt the other day he made it sound like we could start her on it soon, we were just waiting to get her of the ACTH. Apparently that's not correct. They start the diet in the hospital so they can monitor the child closely and they usually like to do only one child/family at a time (1 a week). They are booked through the beginning of May, so it's looking like she may not start it until the end of May (unless the doctor thinks she needs to start sooner). She mentioned that they usually start babies on formula only (a special formula at a 4:1 or 3:1 ratio)...because it's easier to do. I'm not thrilled about that because 1)even with Reagan eating better as of late, she's still not drinking nearly as much as she should be for her weight 2)she's finally gotten to where she's eating solids very well, I don't like the idea of going backwards! She was going to talk it over with the nurse and doctor and get back to me. I guess we'll just have to wait and see what they decide. I'll keep you posted.