Monday, July 20, 2009
Last night went a little more smoothly. We tried Reagan out in Grandma's bed and she seemed to like it a lot (although I don't know how much restful sleep Grandma got). We found these huge bug bites on her legs and were afraid to put her back where she had been sleeping, so last night I put some tight fitting pants on her and put her in bed with Grandma and she slept pretty soundly. She woke up briefly at 2am and then at 4am she woke up crying so I got up and gave her a bottle and then put her back in bed (wide awake) with Grandma. Then at 7 she moved into bed with me where we both fell back asleep until 8:15 or so. Very nice. We needed that. No more new bites, but goodness the three she already had are quite nasty. Her skin is just so sensitive, poor thing. Today she had a session of OT with a new (temporary) therapist. She didn't seem all that skilled (but who knows, maybe it was just because it was her first time with Reagan). I think I'm glad that we'll be moving on to another, hopefully more experienced, therapist once we get into our new house. Reagan continues to be in a good mood. I can't help but think that it has something to do with the fact that she hasn't had a dirty diaper in days. I'm not looking forward to the end of that streak. Something tells me it's not going to be pretty. Seizures are still pretty rough. She took a good long nap this afternoon and when she woke up she had a TON of seizures. She's having a lot of asymmetric spasms in her legs. Where one leg will pop up, kind of like the reflex when a doctor hits you in the knee. This is fairly new for her. She used to have no involvement of her legs with the spasms (only arms) and they were always symmetric. Not so much now. I'd say she's having more asymmetric ones than not, involving one arm or one leg. It's strange how these seizures evolve, yet remain the same. In our case anyway. Nothing has even come close to stopping her seizures and only a few things have even made a dent in them. It's just so frustrating. It's like we're stuck. We've been at a complete standstill since her diagnosis. I'm ready for some forward progress. Enough is enough. So keep on praying for this one. She just couldn't be more precious and she SO deserves a break!