As the title suggests, James is doing well. ::knocks on wood:: Perhaps we have found that sweet spot of medications to keep his seizures under control. We finished our 7th trip to Chapel Hill last week! I believe we are close to getting these trips down to an art. However, James is now presenting with fevers after his infusions but, thankfully, they’re only fevers at this point. And they only last for a few days. I’m considering doing something special for after his 10th infusion, but not sure what it could be yet… Maybe something with excavators or garbage trucks?

Anywho, James is still in speech therapy once a week and occupational therapy twice a week. He will also be starting equestrian therapy (which I’m totally stoked about!!) on Saturdays at the end of September. Sometimes I wonder if I did that more for me than him hah! Though, in my defense, equestrian therapy is really amazing at strengthening one’s core - something James will need in the future. I’ll try and post pictures of him on a horse as well. Yes, he has sort of ridden a horse at Cory’s family’s farm (and I use the term ridden VERY loosely) and he wasn’t scared! Maybe a little like, “what are my parents doing??” but not really scared. So I hope this therapy will be a good experience for him.

Speaking of the future, y’all. Y’ALL. A while ago, I received an update from the BDSRA foundation stating the company REGENXBIO, halted their research and trials on the RGX-381 and RGX-181 gene therapy treatments for CLN2. RGX-381 was ocular gene therapy (vision loss is, unfortunately, something that will happen in the not so distant future to James) and RGX-181 was the CNS gene therapy (the one that is injected directly into the brain). Well, yesterday, I saw the news that Tern Therapeutics will be picking up where REGENXBIO left off!! I don’t know timelines, but it’s something to look forward to and I’m definitely keeping a close eye on their progress.