Last week at James’ neurology appointment, the doc made a couple of med changes, one of which was to take James off of one of the seizure meds this week. Tuesday was his last day of that med, but his spasms are still crazy. They happen so quickly that we hadn’t been able to catch them on video…until Wednesday. James was in the middle of a physical therapy session that Stacy was filming when he had one. Here is that video, but I have to warn you that it might be hard to watch.
The video is on YouTube, but I’m not sure if it will get taken down because of some violation of their terms. The video has also been uploaded to James’ Facebook page and can be found here: https://fb.watch/aRN_e17voM/
Oh, and if you’re not following James on Facebook, you should be. Hint, hint.
On Thursday we saw the neurologist that is overseeing the ketogenic diet that he is on for the seizures/spams. Yes, James currently has two neurologists. James’ regular neurologist doesn’t deal with the ketogenic diet, so we are seeing one who does. So, we met with the keto neuro on Thursday, and she put James back on the seizure med that the regular neuro just took him off of. Really?! We were only giving it to James once a day, and she wants to try it twice a day for the next couple of weeks and see if the spasms get any better, or if they stay the same. Okay doc. You’re the expert.
I want to end this post with a shoutout to Stacy. She is the best nurse and caregiver that James could have. We were both put in a position that we never imagined. Our lives were turned upside down when James came along with all of his medical issues. It’s not easy. Sometimes we struggle to hold it together, but somehow we do. I work, so I get a break from James, but Stacy is 24/7/365 James. I don’t know how she does it. I don’t think I could do half as good of a job as she does. So Stacy, in case I don’t tell you enough, you are awesome. I hope James knows how lucky he is to have you as his mom.
