A snowstorm blankets Maine. And one of Tess's favorite places opens back up for business.
Read More#367: Relax This Instant
There are times when Tess becomes a ball of tension. Jaw clenched. Brow furrowed. Fists of fury. How can we help her chill out?
Read More#366: Back and Forth
Our convos with Tess tend to be short. Usually they end after one word. But today was different.
Read More#365: I'm Walkin Here
A fresh set of eyes looks at an activity Tess does every day. There are some surprises, including one that Miss Tess springs herself.
Read More#364: Sneakiness
As our year draws to a close, we stay in and watch the snow fall. And Tess has one more surprise up her sleeve.
Read More
#363: Happy Holidays
Let's do one final 2021 check-in with our girl, shall we?
Read More#362: Things We Know (about Tess's Language)
What can we know for sure? Are we in a simulation? Is anything real? And what exactly are Tess's abilities with language?
Read More#361: MetroMetroLand
Once upon a time, three men had an idea. It was completely insane. It probably shouldn't have worked at all.
Read More#360: A New Kind of PT
There's one symptom we see often in kids with Hao-Fountain Syndrome. It can cause major issues. And in our house we're trying to do something about it.
Read More#359: Grateful
The forecast: 35 and couch-y. Please join me in some holiday loafing.
Read More#358: Lady Man Club
I felt pretty spoiled last weekend. Because I had some QT with Tess.
Read More#357: Sleepless
I'm feeling rather broken at the moment. And I'm stumped about how to get out of it.
Read More#356: Vaxxed
We've all been feeling it. Time is behaving strangely, no question. But one especially long wait for the T-Bird has finally come to an end.
Read More
#355: That's the Breaks
You know those punch cards? You've seen 'em at your local cafe, maybe, or your favorite sandwich shop. Buy 11 and your 12th one is free? I think we need that for hospital trips.
Read More#354: Uh-huh
I got in fights. In France. Mostly because I was American. So I did my best to blend in.
Read More#353: The Tess Army Gathers
Ninety minutes. A soccer field. And a gathering of some of Tess's greatest champions.
Read More#352: Hello My Friend
One of the hardest things about raising a kid with a rare disease is raising their neurotypical sibling at the same time.
Read More#351: Can't Check the Box If You're Rare
Check the box. Yeah, it's on the form there. Hao-Fountain Syndrome. Should be under H. Oh, it isn't there?
Read More#350: Getting Old
I have these routines with Tess. Things that we do together that always work. Okay, maybe not always.
Read More#349: Take It to the Bank
Taking a major step in moving toward a cure for Hao-Fountain Syndrome. Starting something up that will let us collaborate like never before.
Read More