Saturday, October 31, 2020

Halloween 2020









 I felt sad all day. My heart hurt and my stomach was queasy. Halloween was Colin’s time. He loved all things scary. He would always try to get out of school work and find scary things in the Internet and he would make his scary, “raaaahhh” sounds. Priscilla and Mel had a hard time reining him in during this time of year. 

We decorated this year. I think we did last year, too. Casey really enjoys it so we do it. It’s just not quite the same. But we put out all of our accumulated decorations mainly in the yellow room and wish room.  We don’t ever do much outside.  

Nurse Julie ended up being able to work so that was good.  She hadn’t been here for about a month.  Casey was still in bed when she got here.  Within minutes of her being here she noticed that Casey’s mouth looked like it was moving up in the corner more than before; like he was smiling.  I can tell when he smiles because his eyes crinkle.  He lost his smile because of the weakness SMA causes. I would love to have him be able to show his smile with his mouth!  Then we showed her his feet.  When he’s laying down and his feet are propped in a way that they’re not touching the bed, he can move them up and down like he’s using a gas pedal :)  She said his movements we bigger and looked stronger!  Yay for Evrysdi!  

Casey dressed as a Scottish bagpiper.  

Gene, Julie and Casey carved pumpkins.  

We never get Trick or Treaters here.  I sent some little Halloween things and treats to Conor and Eddie.