Tuesday, November 22, 2011
Today has been another horrible day for Reagan. She didn't sleep well again last night. We put her in her bed and when she woke crying around 2am Mike got up with her. He was able to get her back to sleep eventually but he didn't dare try to put her back in her bed. He left her in her chair where she slept til about 5:30am. That's when I got up with her and boy was she fussy...and awake. She actually cried for most of the day today. We took her in to the pediatrician just to get checked out, but ears and throat look fine. She did have three liquidy diapers today (one of which ended up on her nurse's pants)...not sure what that's about. This morning I switched her from pedialyte to half pedialyte/half formula. She's been super nauseous all afternoon. Maybe her tummy wasn't ready for formula yet. I don't know. If all of this wasn't enough, I realized today that we forgot to do her 4wk blood draw for the EPI-743 study last Friday. So this afternoon, we had to drag her back in to the doctor's office for a blood draw. Thankfully, her mood had improved a little by this time and she was actually well behaved for the blood draw. Tonight she's been much better. She's still very anxious, moving a lot, and super nauseous...but she has stopped crying and that's a huge improvement. I'm hoping she'll be able to get some sleep tonight and have improved days from here on out. These long nights and bad days are wearing on us all.