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We’re still here. If you’re following this blog and were expecting a post a couple of weeks ago, I apologize. There’s still not much going on over here. Not enough to write about anyway, which is why I skipped posting on February 12th. It probably would have been the shorted post I have ever written. I made the decision to hold off an additional week and post on the 19th, but there still wasn’t enough to post about. So here we are at the end of February, and I figured I finally had enough to write about. I think I will continue this way going forward. I will only write bi-monthly posts if there is enough to write about. If not, I will wait until there is. Sundays have typically been the days that I write posts so you can probably check back here late on Sundays or on Mondays to see if something new has been posted. Or maybe I’ll have Stacy put up a note on James’ Facebook page when I write a new blog post.
VEEG and VNS
This is probably the most important thing that happened this month, so we’ll start here. This past Tuesday and Wednesday James had a VEEG at Rush University Medical Center in Chicago with his new neurologist. It was much nicer when we only had to drive 10 minutes to do a VEEG with our old neuro, but since he dropped us, we found a new (and better) neurologist at Rush. The only draw back is that it’s a 40-minute drive now.
We weren’t taking any chances with the germies floating around so James wore a mask while we walked through the hospital.
This is the view we had while waiting to start the VEEG. In the distance is the United Center where the Chicago Bulls and Blackhawks play.
I always feel bad for James when they have to put on all the EEG leads, and then wrap his head in gauze to keep them all in place. That can’t be comfortable.
James was so relieved to get all of that crap off of his head Wednesday morning. I would be, too! It has to be so uncomfortable, especially when you’re trying to sleep.
A couple of things came out of this VEEG. The first one isn’t a shocker, but it did show quite a bit of seizure activity. The neuro said that most of the seizures occurred in the morning, so we are going to increase the dose on one of his seizure meds in the morning and see if that helps. We are also going to start weaning him off of Charlotte’s Web CBD oil. Stacy gave it to him twice during the VEEG and there was no difference in the seizures, so the neuro feels that it isn’t doing anything to help him. As of this morning, James is completely weaned off of Charlotte’s Web. If you’re reading this and considering starting your child on Charlotte’s Web, don’t let this dissuade you from trying it. Charlotte’s Web has worked for lot of people. James’ seizures have been extremely tough to control. We’ve had him on more meds than I can count. Some of them seem to work in the beginning, but somehow his seizures break through the meds. Just because Charlotte’s Web didn’t work for James doesn’t mean it won’t work for your child. Obviously, talk to your neurologist first before starting Charlotte’s Web or any other “treatment”.
The neuro checked his VNS while we were there, and the battery is almost dead. Stacy, being the smart ass that she is, told the neuro that we’ll call AAA and have his battery jumped. The neurologist laughed and thought it was funny. Of all of the neuros we have seen so far, this is the first one that has a sense of humor. Another point in her favor!
Unfortunately, when the battery dies in the VNS, you need to replace the whole device. You can’t just pop open the back cover and put a new battery in. Stacy called the surgeon’s office on Friday to schedule the surgery. We don’t know when it will be yet.
Birthday Party
We really appreciate when James gets invited to birthday parties. Although he is unable to do most of the things other kids can, I think he appreciates it, too. It makes him feel included, it gets him out of the house, and it lets him experience different sights and sounds. It was actually quite the experience for all of us. (Stacy and I went, too.) It kinda made me wish I was a kid again. They had video games, laser tag, and an indoor ropes course.
A Letter of Thanks
This past Christmas Stacy came up with the idea that instead of everyone giving James a gift, to bring a toy to donate to our local children’s hospital instead. James has received so much over the years, and because of his inability to do many things, the only gifts that makes sense to give James are things that he can see, such as movies or books, and clothes. While James did get a decent amount of those things for Christmas, we collected a lot of toys that Stacy, James, my sister, and her two kids took to the hospital in early January. Last week the hospital sent this nice thank you note:
We know all too well what it’s like to be stuck in the hospital. It gets kind of boring at times. We usually rearrange the room so James can watch TV from his bed, but that’s usually what he does at home anyways. I imagine that some of the other kids who aren’t as immobile as James would probably be extremely bored, maybe even sad or depressed. Hopefully these gifts put a little bit of a smile on their faces.
