Monday, January 2, 2012
Reagan did sleep last night. That's the good news. She woke me up with a squeal this morning around 6:50am. She was wide awake (and had a huge wet diaper...she usually doesn't go unless she's been awake)...so I'm not sure how long she had been up. Her hands were like ice, so I put her in bed with us and she snuggled with Daddy and fell back to sleep. My alarm went off at 8am (for her medicine) and she woke up about 10min later...probably my fault. She was happy, but feisty again. She's definitely a little off. This morning she had a random throw up and then I drained a good amount of fluid from her tummy. Her cheeks, chin, and nose are red (for whatever reason). And the chorea has definitely picked up (along with her heartrate). She's moving a lot and can't sit still for a second, she's squealing and super vocal (but sounding a little on edge or whiny most of the time), she's snapping those teeth like a snapping turtle, and there's a hint of the bad day smell coming from her...all signs that she's fighting off bad days. I'm hoping she'll pull through and skip over the bad days once again. It would be nice to keep this string of good days going. Although most importantly, we need her good by the end of next week. That's when we go back to Stanford for her EPI-743 follow up. I definitely think we've seen some improvement since starting it. She's been a lot more vocal since getting on it and her speech therapist has even mentioned to us that she seems a lot more aware and alert during her sessions. Of course we're hoping for long term, significant improvements...but so far so good. Please keep our feisty girl in your prayers!