10/01/2026
Boston, you were worth the trip. ❤️
Today we head home, and while we didn’t leave Boston with a diagnosis or all the answers, we left with something that has been just as important to us — fresh eyes, a team, and a plan.
Ashton was seen by multiple specialists through Boston Children’s Pediatric Diagnostic Program, a program specifically built for complex cases like his. And honestly, we heard exactly what we already know:
He is a puzzle.
Which, of course, Ashton being Ashton thinks it’s cool because to him that means basically he’s a “shiny” or “rare Pokémon.” So apparently this whole medical journey has just been preparing him for his true calling. 😂❤️
We had bloodwork (never fun!), more conversations, and more pieces of his story looked at from different specialties. His genetics/metabolism team is also working on paperwork for the Undiagnosed Diseases Network (UDN) and another specialized program, so there are still doors being opened.
There are also more GI investigations ahead. They want to repeat some scope work and are looking at a capsule study to get a better look at his small intestine — particularly the lower portion that hasn’t been reachable with previous procedures because of how small and narrow things are. That will likely be coordinated between Boston and Cincinnati depending on which team feels most comfortable performing it.
And maybe the biggest thing we are bringing home with us is this:
For once, an entire team looked at Ashton and agreed that there is more going on than simply “he needs more calories.”
They feel his pancreatic insufficiency may be secondary to something else, rather than necessarily being the entire explanation for everything we’ve been seeing.
We still don’t know what that “something else” is.
And we knew going into this trip that we probably weren’t going to walk out with a neat little answer. Ashton is not an easy case, and we’ve known that for a long time. But having a team whose entire purpose is to take the complicated pieces, put them on the table, and look at the whole child instead of one isolated symptom feels like a really important step.
So we’re coming home tired, emotional, still monitoring, prioritizing his happiness, hopeful… and still searching. ❤️
We don’t know where this road is going yet. But we finally feel like we’re moving forward instead of just going in circles.
One more step closer to understanding our shiny little Pokémon. 💙
Thank you to everyone who has prayed, checked in, followed along, encouraged us, and cheered Ashton on through all of this. We feel every bit of it. This will I’m sure be one of many trips back here but all worth it.
The search continues. And so does he. ❤️
