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 :).