March 22, 2017
When T has a meltdown at school, she can’t learn. Takes hours sometimes to get her mojo back. And there’s one person there who we look to, to sort it out.
Growth hormone, week one. It is already making changes in our girl. Not all of these are welcome changes.
We embark on a new chapter: the era of giving growth hormone to Tess. But she has some stuff in her past that makes us nervous.
A huge bummer for Tess's greatest protector. Not even frisbee could cheer him up.
It's the Special Olympics, year two. Tess carries a certain torch. And if snuggling were an olympic event, Tess would totally medal.
A long day in the hospital. Running a marathon is easier. For real.
Christian delivers a piece of unexpected but thrilling news. News that makes us leave the conference with a new purpose--in which we're gonna need help from you.
In Houston we families have gotten to know each other, and now we get to work. A man from Memphis unveils three secrets about USP7. All of which blow our minds.
We've been waiting for almost Tess's entire life to meet someone like her. To meet a family like ours. And it finally happened.
Tess is getting there. In her eyes these days we can see the wheels turning.
Two big things Tess taught us this winter, about her life as a skier.
I'm learning about education. Man, it's complicated. But Tess deserves this.
A simple game on a couch. In the endless enigma of Tess's communication, we unlock a huge piece.
A small thing proves to be Tess's undoing. A small thing emblazoned with the 13th letter of the alphabet.
Bad stuff is happening at a blindingly fast rate. And I have to stand up for Tess. Because if I don't, no one else will.
We got kicked off our state's Medicaid. It wasn't our fault. And it showed me just how broken and dumb and insulting and backwards our system is.
Why isn't Tess growing? Is there anything we can do?
I've said that in genetic testing, we really ought to isolate the gene that makes me leave my wallet and keys in public places. Here's a story about a day involving that unfortunate tendency, as well as other colossal failures.
Crazy pills aside, my wife and I do a complete 180 on the best way to talk with our Tess.
We've done something--brought an event on ourselves--that causes severe TBE. I can't figure out why the TBE, until a visit from a friend makes everything clear.
Five years ago, Bo Bigelow quit his law job to stay home with his kids. Turns out his daughter Tess has special needs. She is almost entirely nonverbal and is only just beginning to walk at nearly age 6. She just started kindergarten, but functions at the level of a 1.5-year old. She's different. And now, so is everything else.
Follow their family's journey as they navigate Tess's relationship with her older brother, deal with school and special education, and try to solve the genetic mystery of Tess's ultra-rare disease.