Monday, April 8, 2024

Total Eclipse of the Sun, April 8, 2024, Milton, VT




 It was hyped for weeks!  TV, social media everywhere.  But we kinda rode the wave.  We didn't get overly psycho about it but we did read about it and speculate about what it would be like here in VT and all the people it would bring, etc.  

The Easter Bunny brought us all eclipse t-shirts!  Casey and Staci made a few crafts (see pics) and we made a sweet munch that Casey named "Space Junk."  We had our glasses ready.  Gene put some seating out back in the dog yard (not the poopy part). 

We got Casey in his chair in the AM and then down for a break and a rest and then back up again.  Somehow Gene managed to drive him around the side and to the back of the house without getting stuck.  We had snow last Wednesday to Thursday--and a lot of it, but it melted quickly but of course that equals mud.  We got Casey tilted in a good position in his chair.  Gene and I are kinda freaked out about Casey watching the whole time so we just had him watch here and there.  I found a craft that used a paper plate that would help block out any light that might seep around that eclipse glasses.  So we had him use that.  I worried that if his glasses got cocked that he might have his eyes damaged because he couldn't tell us that they were not in proper placement so this made me feel better.  

It was way warmer that we expected so we had a fleece blanket on Casey and he had fuzzy muk luks on his feet.  I took out Colin's blanket that MJ and Brenda sent him in Sept of 2004 that has a space theme so that was cool.  (see pic)  Of course as the eclipse creeped towards totality, the air got a lot cooler so Casey was glad for his blanket.  AND, the second that the sun was maybe 3/4 hidden, the damn mosquitoes came out!  Gene said they were still babies and probably couldn't bite but they were gross swarming around.  

Molly behaved pretty well.  Earlier, Gene was playing with Molly with sticks and somehow Molly pounced on a stick and impaled her mouth with it!  He was freaked out.  There was lots of blood and he wasn't sure if she was breathing and he thought he was going to have to bring her to the emergency vet!  But then she was fine!  She's not wanting to eat her kibble, even with the warmed water, so he's going to get her some canned food and hope she can tolerate eating it.   

Casey was very cooperative the whole time we were out there.  He didn't have his T (communication device) as he needed to wear his eclipse glasses so he couldn't wear his glasses that have his switch on them.  It's hard enough to use the device outside anyway.  And when he has it, he tends to do his own thing and not pay attention to whatever we are doing, be it a concert, in a store, or an event like the eclipse.  Without his device he couldn't talk to us, but it did enable him to pay better attention to the phenomenon.  

We listened to Alek's radio/eclipse show on his station.  Alek is Nurse Staci's son and he is blind.  He was lent a device that, in a way, allowed blind people to experience the eclipse.  He was outside on his deck and propped the device towards the sun and it would give a series of sounds as the sun became more and more covered by the moon. It's called the LightSound device.  It changes light into sounds.  Kinda cool.  He also played some of our music requests:  Sound Garden's Black Hole Sun and some of The Beatles tunes.  Casey was pleased.  

Once it got close to totality, it went so quickly!  We got brave and let Casey look without his glasses when it hit totality.  I think he thought it was cool.  It got pretty darn dark and chilly and the shadows looked weird.  I didn't really try to take any pictures-left that up to the professionals. 

I've added all pics related to our the eclipse, starting with the window decorations Casey and Staci made...





















Tuesday, August 15, 2023

SMA awareness day 15: appointments are exhausting

 

Driving with eye gaze
I’m so tired I don’t know if this post will end up saying all that I have to say. I’m tired. I was night nurse last night but I did get a quick nap in late morning after Casey had his shower and was settled in with his device with Nurse Staci. 

We had a 2 hour appointment scheduled and it’s only about 20 minutes away with easy parking so we didn’t have to leave until just before 2. We had Casey up in his chair hanging out for and all ready to go so all we had to do was roll him out the door when it was time. 

The Chair guy (Cooper) showed us a sample of a Manatee shower chair. We have the Leckey and like it but it’s old in the tooth—probably at least 10 years old. This shower chair has a trolley that is adjustable in height. That will be AWESOME because currently we have to bend down to wash him. Nurse Staci is taller than me and has a bad back so this will be very beneficial. Can’t wait!  The rest of the chair is pretty similar to what we have.  

So then it was time to try driving a power chair with eye gaze. Somehow I just thought they’d put the software on Casey’s device and hook up a wire or two and we’d be good to go. I guess it’s more complicated than that 🤷🏻‍♀️. So we had to take Casey out of his chair and transfer him to another chair that was set up for eye gaze driving already. I usually bring our sling but didn’t this time since I wasn’t anticipating getting out of his chair. But they had one that worked fine. Cooper set uk the laterals and head rest as best as he thought would fit Casey and we got him in. We fiddled some but could get him looking great, but acceptable. At this point I was trying to text Gene to see if he wanted to come in. Of course we had Molly…Texting doesn’t work down in the rehab so Sharon walked me out back and we hailed Gene and Molly. Sharon insisted that we could bring Molly in and make her a therapy dog for the day. Molly loved it!  She got lots of pats and scritches. 

Casey wasn’t very cooperative with calibrating the device and his head was kind of crooked. But we took him out into the hallway and tried to coax him into trying. He is used to using his eye blink to use his communication device and to answer yes and no questions so it would take some concentration. Finally when we left him alone he seemed to try a little more and was making some small but deliberate movements. 

We’re going to need at least another 2 appointments before we are ready to submit. At least one more driving practice and then we’ll have to nail down what brand and model chair to get.  There’s a lot to that, too. We need a chair compatible with the seat we molded and if we go with the eye gaze, a brand that will work with the software. Plus we have to make sure the chair has enough real estate to fit all of Casey’s medical equipment. Apparently double vent tray aren’t readily available. 

Plus, Gene’s insurance is changing after September 9th so there’s that to deal with. And Casey’s primary doc has left so we have to break in a new one. There will be lots of scripts and stuff for the new doc to write, etc. 

So, we are pooped. Physically and mentally pooped. And I ended up telling Sharon (PT we’ve known a long time) about Connor so I had to cry a little so I was emotionally tired, too.  

Thankfully Gene drive across the street to Cumberland Farms and got Nurse Staci and I each a super large slushee as a treat. 

I only took this one pic and zero video. He didn’t drive far enough to make a video anyway :). 

Wednesday, August 9, 2023

SMA awareness day 9-

Merry Grinchmas!


 Today ‘we’ (I say that lightly since Nurse Staci did most of it) made a sugar cookie house. BUT it’s not totally decorated and assembled yet so pictures will have to wait until tomorrow.