Tuesday, September 16, 2014

Sweet but no sleep

Reagan did not sleep much at all last night. She went down around 11:30pm and by 12:30am she was awake, making noise, and kicking around in her bed. I got up, gave her some Lortab, and covered her back up, but I don't think she ever went back to sleep. Around 2 or 3am I heard her vocalizing a lot so I got up and found her sideways in bed once again. I decided to just put her in her chair at that point. She did seem a little more calm in her chair, but still not at all sleepy. No rest for the weary. I got up at 5:30am for my run. Reagan was still a little kooky/vocal this morning, but she mellowed out as the day went on. She's actually had a pretty good day! She had a super busy day therapy-wise. This morning she had a session of OT/PT/speech from the school, immediately followed by her private PT. Both went very well. Her PT was taking advantage of her tone and was amazed at how well she was sitting and bearing weight. Then this afternoon her private OT came and she was good for that as well. For no sleep and all of the therapy she had, she was quite the superstar today. She was also super precious and sweet. Lots of good smiles from her today and not nearly as excitable as she has been the last several days (her brother was ALL over her this morning and she didn't even seem to mind). The only negative is that she was a bit spitty. That led to coughing/choking at times and not really tolerating her bean bag chair, but she's been great otherwise. Tonight we had another battle of the clonidine though. I gave it to her and 30min later she was kicking and fighting, thrashing and biting! I held her as tightly as I could and eventually she fell asleep. Praying she stays asleep tonight. These sleepless nights are rough on her (and their not great for us either)!


Going Green for Mito Awareness Week! 



Being silly tonight...crunching in half, nearly kneeing herself in the face!