A (Very) Late Update — But Worth the Wait!
I’m so late sharing this, but better late than never, right? A few weeks ago, we took James to the N.C. Transportation Museum for A Day Out with Thomas event — and oh my gosh, he absolutely loved it – he especially loved his grandma showing up too!
From the second we pulled into the parking lot and he spotted the train on the tracks, his whole face lit up. We spent the day exploring all the trains, checking out every nook and cranny of the museum, and of course, riding Thomas himself (multiple times because we got the all-day pass). He was grinning ear to ear — clapping, laughing, and totally in his element. It was one of those days you just don’t forget. Although, there was one time we weren’t sure he was going to ride Thomas anymore. The museum set up a play station of sorts with nothing but Thomas tracks for the kids to play with. I’ve got to admit – it was a good marketing strategy! Worry not, we have pictures of James with Thomas and Percy.
Switching gears to how James is doing:
On the medical side, we’ve been feeling a little more hopeful lately. James’s ocular injections are going fairly well, and while we can’t say for sure yet, we honestly think there’s a chance his vision could be improving (knocking on all the wood). Every tiny bit of progress feels huge to us and to anyone who’s unfortunate enough to be in the same situation. So we’re asking you, please, please, keep those prayers and good vibes coming. We can certainly feel them and literally see, at least with his eyes, what they’re doing. We cannot thank you enough for all of your prayers.
And despite everything that comes with CLN2, this boy keeps surprising us. His speech is getting better, and his personality is shining through more than ever. He’s coming out of his shell, finding his confidence, and showing the world exactly who he is — sweet, funny, full of life and having his own opinions! Oh yes, he’ll tell you if he doesn’t want to do something.
Oh, and after weeks of begging us, we’re finally taking James back to the beach soon! He’s been asking nonstop! Every time we get in a vehicle to go somewhere, James will ask, “Beach?” And we’re just so happy to be able to take him again. (I may or may not be updating this from the beach currently!)
We also have some really awesome news — James will be featured in UNC’s Health Talk blog! We’re so grateful they wanted to share his story and help raise awareness for Batten Disease and for CLN2. As soon as it’s posted, I’ll share the link here.
So yes… I might be super late on updates, but I promise it’s because we’ve been soaking up all these good moments. Days like our train and beach adventures remind me just how far James has come — and how much joy there still is to be found in between the tough stuff. 💙
Much love from all of us! Again, please keep those prayers and good vibes coming our way!