Friday, May 5, 2017

A nice visit

I woke up this morning at 6am to a text from Mike (headed back home from Mexico) and then a call from the nursing agency (never a good thing). Our nurse needed to stay home with a sick kiddo. Thankfully Reagan slept well last night and woke up in a good mood this morning. No nursing and no therapies today so we just hung out with Grandma all morning. Mike got home around noon and at 1:45pm we had visitors arrive. The grandparents of one of the seven that has the same NACC1 mutation as Reagan. They are both scientists and were here in town at a conference and wanted to come by to meet us and Reagan. It was such a nice visit. They told us a bit about the mouse model they've already created with this mutation. How fortunate we are to have such great minds working on this! Reagan and their grandson are SO similar, it's crazy. I can't wait to see what they learn and hopefully we can help them out by talking to Baylor to see if we can send them Reagan's fibroblast cell line! How I'd love to be in the lab working on this! While I do miss science, I'm so lucky to have a hard working husband enabling me to stay home with my sweet girl for all these years. I wouldn't trade my time with her (and my boy) for anything. Reagan was a little groggy while they were here, but at least she was in good spirits while awake. Tonight she definitely seemed a little sensitive especially her eyes. I'm guessing it's neurological and related to the seizure she had last night. Hoping for a good weekend this weekend. We've got a 5k to run on Sunday so fingers crossed!

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