Monday, July 17, 2023

muggy, bleck

 So we had an uneventful day.  Another muggy and hot one.  I should probably have turned on the AC in the yellow room (where we are now) but didn't.  I don't know why.  

Nurse Alice called our for tonight. She hates doing that but she had a rough, painful weekend.  Seeing doc tomorrow.  I hope they can help her.  I tried a couple of times to take a rest but not very successful.  Hopefully Casey will be a good sleeper for me tonight.  

Got to do a quick Zoom with Shannon and Karen this afternoon.  Karen is pretty firm about us continuing Book Group.  She said she will be a guest reader and also visit with us.  So that's good.  It will never be the same. 

We had a tele health appointment with Casey's new neurologist.  We met her in person, maybe 6 months ago?  I figured tele health would be sufficient.  We have to keep seeing neurology so they can prescribe Everysdi.  They are still working on the MDA clinic.  I hope they set it up before germ season!  It would be nice to see all of Casey's specialists at one time in the Fall.  

I treated myself to a homemade frozen hot chocolate this afternoon.  It helped to take my internal body temperature down a bit.  

Casey is watching Night at the Museum.  Gene has to go out and get a bolt for the toilet seat that broke...I'm going to get things ready for my night nursing duties.  

….

So I need to add this. I think we had a visit from Connor today, or maybe Connor and Collie. When Casey gets flipped to his other side in the afternoon/evening, he doesn’t use his device. It gives his eyes a break from all the blinking he had to do to use his switch. Sometimes I shut the device down totally and sometimes I put it to sleep. For whatever reason, I decided to put it to sleep. This new device can be a little tricky to access the area and spot which you then touch to do a Restart, Sleep, Shutdown, etc. So I always take time to be deliberate in what I do because in the past I’ve hit the wrong one before. Casey watches me while I do this. He has eagle eyes. I hit the start menu found the area and specifically touched and slightly held the ‘sleep’ area. The machine did what it usually does and closed and went dark. Casey and I continued in our flipping ritual. More than a full two minutes later, the device started up again and loaded like I had hit restart. Casey and I looked at each other quizzically because we both saw how deliberate I was in picking Sleep. I felt a little prickle on my arms and immediately thought CONNOR EUGENE!!!  It would be just like him to mess with Casey’s device!  And then I felt a something between a prickle and a tickle and I thought COLIN EUGENE!!  Casey agreed with me wholeheartedly!  

2 comments:

  1. I can only imagine how hard it will feel to continue on with book club, but you know he'd want to see everyone still try their best to enjoy it, even with it not being the same💜 I hope you all have a smooth and restful night! I've never heard of frozen hot chocolate. Sounds good!

    ReplyDelete
  2. Oh my heart!!! They were SO making themselves known!! How incredible is that😍

    ReplyDelete