Friday, October 14, 2011
So...today hasn't been the best day for little Miss Reagan. She slept all night but woke at 7:30am...no smiles. This morning she was OK. You could tell she was a little agitated, but she kept it together. She would grunt here and there, we weren't really sure what that was about. I sensed she had some stomach upset. She was a little more spitty than usual and a little gurgly in her throat. We put the drain on her g-tube and lots of air kept coming out. She fell asleep at the beginning of vision therapy this morning and was still asleep when her teacher called at 11:30. I thought she was going to keep sleeping, so I told her teacher not to come. Reagan woke up, but it was probably better she didn't come, because someone had a bad attitude. She was a little squirmy while the guy took off the EEG leads, but she pulled through and somehow made it through PT. Afterward we gave her a bath to wash all the gunk out of her hair and we thought maybe she'd start feeling a little better. Nope. Things only got worse. For the last hour or so that the nurse was here, she was really on edge. She kept yelling out, kinda sounded like a laugh, kinda like a cry. Then she proceeded to cry off and on for two hours tonight. She seemed to do better when I wasn't holding her and she was just sitting in her chair. She'd be fine one second and then screaming the next. Definitely not good. I'm hoping we get away with another mildly bad streak again (although tonight didn't feel that mild). We're going to Stanford next week to start her on EPI-743, so at least she's getting this out of her system now. Hopefully she sleeps tonight...I'm playing in a tennis tournament in the morning, so I really need some rest!