Sunday, October 23, 2011
OK...so no pictures and no in depth explanation about Reagan's new medicine EPI-743...but we had a long night and Reagan's been a little high maintenance today so I haven't gotten much done. Definitely in the next couple days I'll get to it! Reagan did not sleep well at all again last night. She woke up literally the second we laid our heads down on our pillows! She was very restless and moany so I had to pick her up. She fell back to sleep fairly quickly, so I was able to get her back in bed maybe 15min after I picked her up. She woke again at 3am fussing and did not want to go back to sleep. Mike and I both got up with her at first. I stayed up with her from about 3:45-5am...when she finally dozed back off. With all the traveling and going non-stop, this lack of sleep is really wearing on us! She woke this morning still very on edge and moany. I laid her down for a second to change her diaper and she had a big throw up. Poor girl. You could just tell she didn't feel well. I have drained a ton of clear fluid from her g-tube today. She was feeling pretty lousy most of the morning and then this afternoon she started up with the crazy laughs for Daddy. She's actually preferred her Daddy today and been a little more fussy for me. She's still having tons of chorea and her hands and feet are a little clammy, but she's been less moany this afternoon so hopefully she feels a little better. Please keep it in your prayers that she can get some much needed rest tonight and that she starts feeling better soon!