Last night was AWESOME! Ryan slept from 8:30pm-6:30am, I got up and fed him and then put him back down til after 8!! Reagan slept through til just before 8 as well! Of course, I didn't go to sleep til after midnight, but I'm still excited about six consecutive hours of sleep (yes, I know, sad)!!! Reagan has been much more stable today. She was pretty nauseous this morning (makind a lot of gaggy faces) but I drained her g tube and that seemed to help a little. Overall she's been content but still having lots of chorea. And she's still really wiping at that nose. The whole left side is bright red! I'm not sure why she's doing that. I don't know if it's an allergy thing and it itches, or if it's just some weird neurological craziness. Speaking of neurological craziness...she's got an appt with a new neuro tomorrow. I've got a whole list to go over with her. I'm hoping for some good input. Reagan's EEG isn't until next week, but it's one of the short ones that's barely worth the trouble of putting on and taking off all those leads! I'm hoping she's feeling even better tomorrow...thank you for keeping her in your prayers!
(Oops! Just realized I have been making Reagan's new formula almost double strength! The nurse had told me to make it just the same as her previous formula, but I noticed it looked a lot thicker. Turns out it's a little more concentrated. Glad I figured this out now!!)