We are currently in our room located about 0.4 miles from the hospital as James just finished his infusion today. Our next stop is Amtrak and Baltimore! We enjoyed the train ride so much last time that we’re doing it again. Please note: we do travel first class with James in case of a seizure and so he can sleep better because travel time is 9 hours. The best part is watching the engines get switched out in DC from diesel to electric. James really enjoyed that part last time.

We are going to Baltimore for James’s 6 month check up at Kennedy Krieger Institute, who specializes in Batten Disease. It’ll be interesting to see these notes compared to 6 months ago. When we have the information, I’ll try and do a comparison blog on his symptoms. But for now, let me update you on all the things we’ve had going on!

The Zoo Trip:

Two weeks ago, we went to the zoo and, oh. my. gosh. James had the best experience (minus the yellow jacket invasion - holy cow). The weather was wonderful, the animals (except the rhino) were out and James did a fantastic job keeping up with us. We plan to go maybe once a month, but instead of walking the WHOLE zoo, walk parts of it. So we’ll do the Africa part one month, the North American part one month, etc. OH! And they’re adding an ASIAN SECTION. I’m super stoked, even though ETA for the opening is 2026.

Equine Therapy:

James is thriving in his horse therapy. He absolutely loves riding his horse, JoJo - originally he was supposed to ride Chance, the Tennessee Walking horse but they switched his times so he rides with another child closer to his age. JoJo, the sweet horse, is a draft horse. This horse is HUGE under him and so gentle with James and James rides like he’s been doing it for years, though it is in his blood!

Insurance:

Cliff notes version: UNC typically gets James’s infusion medication direct through the manufacturer. Our insurance is forcing UNC to go through a third party pharmacy to purchase the medicine (also called white bagging) and neither one of them are happy with the other. We are exploring other alternatives so we’ll see how that works out.

Overall:

Health-wise, he’s doing pretty well. We’re still working on his speech, rigorously, and he’s doing much better. We are in the throes of potty training him and he’s done remarkably well. We just need him to tell us when he needs to use the potty - still working on that part.

In 2 weeks, it’ll be Halloween and we’ll be at the hospital for his infusion. But fear not! James has a Halloween outfit he’s going to wear and it’s infusion friendly haha. I am also going to dress up (infusion friendly too) - don’t know if Cory will or not… Might have to force him hah!

Speaking of infusions, he still gets a high fever afterwards but now we know to look for it and we can stay ahead of it so he doesn’t feel too awful with the fever. He’s still doing well with being accessed (where they insert the needle in his head). He’s starting to fight taking the pre-meds (Versed, Tylenol, Benadryl), but after sampling them myself, I would too. He’s a champ for having to take them every 2 weeks!

I think that’s about it for now. I’m working on posting pictures of all the things as well so please take a look! Much love!