Friday, June 24, 2011


Last night we went for another walk with Reagan, but this time it did not put her to sleep. Actually, she was still awake at 11:45pm when Mike got in from the airport! She was looking a little sleepy so we put her in bed. She kept moving around but her eyes were closed, so we were hoping she'd settle down and go to sleep. I'm not sure if that ever happened. I woke up a couple times through the night only to find her awake and moving around. So maybe she kept waking up and going back to sleep or maybe she was just up the entire night. Who knows. When I got up at 7:40am, she was wide awake and squirming around in her bed (with a huge wet diaper). I'm guessing she got little if any sleep last night. On the other hand, she has been just as smiley and sweet as can be today! Super cuddly and laid back (even though her heartrate is still in the 110s-120s). This afternoon we finally took her in to get her labs done (to check her Banzel levels and liver panel since she's on so many meds now). We were going to do it last week but with the garage sale and bad days...we just never got around to it! Reagan was such a good girl! She just laid there fussing...not even a flinch! She's a pro! Thankfully the lady got it on the first try and we were out of there in no time (probably her quickest blood draw ever)! Then this afternoon her speech therapist came. She worked with her for a while on the ipad. Then she fed her some more bananas...which she seemed to like until the last two bites...when she kept spitting them back out! I guess that means she's done!! Afterward she started looking sleepy and fell asleep shortly after her therapist left! Poor thing...she was probably tired from staying up all night!! She slept for an hour or two until the dog barked and woke her up when Mike came home. Even though she's been super sweet today, there are a few warning signs that might indicate that we're nearing the end of a good cycle. At one point today her temperature regulation seemed to be off. Her back was all sweaty and clammy then an hour later it was fine. She's also been a little more sensitive and easily startled. And she's got that strong smell to her and her wet diapers (which I still think is just the l-carnitine, it's just amplified on bad days) and a little more bitey with her hand. Hopefully I'm wrong. It's nothing. But if I'm right, I'm just hoping at least we've got another good day or two! Grandma's counting on it!!! Please keep our little princess in your prayers!


Clarissa said...

love, hugs, and prayers to all! she is a sweetie! hopefully she gets some more good days in!!

Shonda said...

I love the last picture. She is really giving a cute smile to who is feeding her.