VEEG
James had been doing annual VEEGs (video EEGs) for many years as a way to look at seizure activity in his brain to see if there were any changes to his meds or VNS that should be made. VEEGs are usually done in the hospital, but we skipped 2019 because of his spinal fusion surgery, and due to Covid, we opted to do an at home VEEG last year. A couple of weeks ago he did a VEEG in the hospital for the first time since 2018.
Nothing major to report. He does have these little twitches in his hands from time to time, which we thought may be seizure related spasms, but they are not. We’re not sure what is causing those twitches, but I guess if they’re not seizures, it’s a good thing, right?
While he was there, the neurologist took a look at the status of the VNS and it showed that the battery had between 11 and 25% life left it in, which means he will need to get it replaced in the near future. They didn’t see much seizure activity on the EEG, so the neuro decided to reduce the numbers on the VNS a little bit so make it last a little bit longer. If we see any increase in seizures, we can always have those numbers put back to where they were. We really haven’t seen much, if any, visible seizures since his spinal fusion over two years ago.
The worst part of the VEEG is probably taking the probes off.
School
In early December James had a rough day at school with some respiratory issues. Stacy decided to keep him home the following day for a “mental reset” as she called it. That must have been just what he needed because he’s been fine ever since. I think we all need days like that. A day to just take a step away from the normal hustle and bustle of our busy lives to just sit back and relax. I know that it’s something that I should do more often.
A couple of weeks ago we got this letter in the mail from his school:
While I am extremely proud of his achievement, I am a bit curious as to how someone like James gets straight “A’s”. He can’t do much without the assistance of others. He can’t read or write, and therefore would be unable to take a test without assistance. What exactly are they grading him on?
Is this like when they started giving out participation trophies in kids’ sports. What lesson is that teaching the kids? That you get a trophy just for showing up? That is not how life works. I can’t just show up to my job and expect to get paid. If I don’t do the job I was hired to do, I get fired.
Don’t get me wrong. I am so proud of James for all of the obstacles that he has overcome. As a matter of fact, I am inspired by him. He has taught me that the excuses I sometimes use as reasons why I can’t do something are invalid. I am just questioning how he is graded and how he made the honor roll. That’s all.
Christmas
Sometime in November I was scrolling through Facebook and there was one of those Amazon sponsored posts of “things you might like.” Most of the time there are things that would either be cool to have, but don’t need, or “why in the world would you think I would like this”. This time though, it was a Cars movie Christmas advent calendar. That would be something that James would like. I was about to order it but had to see if there was such a thing as advent calendars for dogs. I had to be fair, you know. There actually are advent calendars for dogs, so both of our kids got advent calendars this year.
Every day from December 1st through December 24th they each get to open the corresponding door of their calendar. James’ Cars Advent Calendar was kind of like a puzzle. Each morning James got a piece (a car, a part of the racetrack, tool chests, tires, etc.) and we put it together as the days went on. On Christmas Eve it was complete:
Each day of Maggie’s advent calendar contained a couple of small treats that I would give her when I got home from work. She is a good dog and probably wouldn’t get into them when we weren’t looking, but I kept her calendar on top of a bookshelf in our living room, just in case. It didn’t take her long to learn the routine, and as soon as she saw me come in, she’d come and greet me, and then go sit or lay by the bookshelf and wait for the goodies.
On December 5th we took James to visit Caring Santa at the Mall.
A week later, Santa stopped by our house. James was chosen as one of a handful of kids in our town to get a special drive-by parade with Santa being escorted by the police and fire departments.
Here is a video of the police and fire departments, and Santa stopping by to wish James a Merry Christmas:
Christmas Eve we spent with my mom and step-dad at their new condo. Their building management really goes all out with decorations.
Christmas Day it was just the four of us at home relaxing and watching Christmas movies.
James’ gifts included clothes (because he doesn’t have enough already), a few DVDs, a Snoopy stuffed animal, and a different Cars Advent Calendar that he’ll have to wait until next year to open.
For dinner we had smoked ribs, grilled sweet potatoes, and Stacy’s famous corn casserole. Okay, maybe it’s not exactly famous, but it’s a hit around here. I look forward to it every Thanksgiving, so this year when I got to have it for Christmas, too, it was a bonus.
Well, I guess that puts a wrap on 2021. Pun intended. We hope you all had a wonderful holiday season and have a safe and happy New Year. I can’t sign off on 2021 without saying thanks to all of you who had a part in our lives this past year. Even if you’re not local but follow James and keep him in your thoughts and prayers, that counts, too. Thank you all.