Saturday, January 14, 2017

Grandma in charge

Reagan and Ryan were both up and at em early this morning. So much for sleeping in! Grandma drove in this morning to take over kid duty so Mike and I could head to Houston for my marathon tomorrow. Reagan has both a day nurse and a night nurse (until 11pm anyway) working today to help out. Reagan has been in a great mood today, very responsive and alert, wide eyed and content. Grandma was thrilled to see her doing so well. Vocalizing and laughing in response to interaction. Sweet girl. She's got her hand in her mouth a lot again today, which is causing quite the red nose. Tonight went very smoothly as well. She got increasingly quiet and still as the night went on, but was not dozing off on her own. The nurse gave her clonidine around 10:15pm and transferred her to bed and she was asleep by 10:45pm. Hoping she stays asleep tonight for Grandma and everyone can get some sleep tonight!
The nurse texted me this! Made me miss my girl even more! 


Kallie said...

Have you been able to determine why she puts her fingers in her mouth? My son (almost 5, non-verbal, rare large genetic deletion that causes a lot of issues) does this a lot. For the longest time we thought it was molars, but they are finally through now. He had an EGD about 3 weeks ago that showed esophageal damage from reflux, so eosphageal pain is a possibility. We are in the process of getting an IBD/Crohn's disease diagnosis as well, and I wonder about nausea, too.
Reagan is such a beauty! Best of luck on your marathon!

Reagan Leigh said...

Thank you! No we're not really sure why she does it. We know she has reflux and she's been on Nexium for years but we think she still has break through silent reflux. She's been pretty into her hands ever since her seizures were controlled. It's good and bad I guess.