Last night I reduced the Clonidine dose (Reagan hasn't been sleeping much on 3/4 pill, but I didn't want to just stop it altogether either)...and with the reduced dose she actually slept better! She slept from 11pm-5am. I was glad to just get a string of consecutive hours together of sleep. Of course, she was wide awake at 5am! It's funny she actually woke saying Ga! I haven't heard her say Ga Ga in quite a while and today all of a sudden she's said it 10+ times (even before Grandma got here)...it was like she knew her Grandma was coming today! Her mood has been pretty good, that is except when Mike takes her. The last couple days she's really been giving her Daddy a hard time. She'll be fine and then he'll take her and immediately she'll get the big lip and frowny face and start crying. No clue what that's all about...usually she's a Daddy's girl. Today Reagan's had several dirty diapers (very unlike her) and been extremely gaggy all day. She's been super nauseous, retching and making gagging faces nonstop. She's super sensitive, just giving her a kiss on the cheek can trigger a retch. She threw up three times tonight...but it didn't seem to give her any relief. How she's throwing up so much (with no food in her stomach), I don't know. And then now she sounds all junky in her throat...worries me. Poor thing. Please pray that this nausea passes. She's also still having a lot of movements. Sometimes you pick her up and she kicks her legs around so much it's hard to hold onto her...it's almost like she's having fits of the chorea where it escalates and then tapers back down. We already have the new medicine (tetrabenazine) to try for the chorea but I'm just nervous about trying anything new. We've got enough problems to deal with right now without adding a new med and side effects to the mix. I'm not sure what to do about it. I'm still on the fence.
Looking cute, but about to make a gaggy face.