Tuesday, June 30, 2009
Reagan had another good night last night. We're so sleep deprived most of the time it's hard to remember how many times we actually got up during the night. But last night Mike and I only got up once. Reagan woke crying and I had to pick her up to snap her out of it. She finally fell back to sleep and then just as I was crawling in bed, she woke again. I was so exhausted at that point I pushed Mike out of bed and made him go console her (after all she falls asleep easier for him anyway). I guess it worked because I don't remember waking again, that is not until 6am when the alarm clock went off. We were planning on leaving by 6:15am (it turned out to be closer to 6:30) to get to TX Children's for Reagan's procedure. We were there by 7am but they didn't even begin the procedure til 8:30 (apparently her doctor didn't write down a good enough reason to do the small bowel follow through and they had to get approval). They finally took an x-ray, then made her drink the barium and took pictures as it went down. Then they had me feed her some more of it and we waited for it to move all the way down into the colon, they said we would only have to wait 30min but it ended up being closer to 1hr because all of the rooms were full. They took some more pictures and around 10:30 we were finally headed back home (no word on the results, I'll probably give the doctor a call tomorrow). Reagan did pretty well with all of it. She got a little agitated and fussy (of course she was probably hungry), but she never got out of control like the other kids in nearby rooms screaming bloody murder! She took a little nap on our drive home and then was awake in time for vision therapy at noon. I wouldn't say she was totally alert, I think she was still tired and her head was a little droopy, but she made it through the whole session and was fairly attentive. One thing her therapist noticed is that her arms/hands seem to be more relaxed (her feeding therapist commented on the same thing yesterday). I wonder if it's related to the Clobazam. It would be nice to finally see some good side effects instead of all the negative ones. Of course, less seizures is always a welcome sight. Please keep that in your prayers!