In other words, his story - about a boy with a heart of gold and a thousand tricks up his sleeve - feels all but impossible to write .
Sam's medical history is long and complex. I could go into it here, but it's just something he lives with, not who he is, so instead I'd like to focus on some of the things he enjoys, despite the medical.
Sam loves people, and seems to be able to make friends wherever he goes. He likes playing Minecraft and other video games, is learning how to make stop motion videos, and wants to be a famous YouTuber one day. He enjoys roller coasters (especially ones with sudden drops or that go upside down), flight simulators, playing frisbee, riding mules, and proving people wrong. When he grows up he hopes to work at Costco with all his friends (and do YouTube videos on the side).
He currently has a central line (HPN dependent), G tube, J tube, and appendicostomy tube - all of which he's happy to show or explain to anyone who asks. No shame because each one has helped make him as healthy and strong as he is today, allowing him to do and be more, not less.
Currently, he's followed by more than a dozen docs, from 4 hospitals, and in 3 states - working together as needed to form a solid and supportive team.
There's so much more I could include here, but I won't. Not now. The only other thing I'd like to add is that as of now, he's stable, fun to be around, and if you ever have the chance to meet him, guard your pits, because he likes to tickle. 🤦♀️