#422: A Million Times Better Than Stuff

February 15, 2023

I'm a year older. Blowing out the candles on this year's cake, what's on my mind?

#421: Oh Say Can You See

February 8, 2023

CVI stands for Cortical Visual Impairment. Tess has it, as do many people with Hao-Fountain Syndrome. But did you know that there's something you can do about CVI?

#420: Nu Shooz

February 1, 2023

Let's hop into the car and head out, shall we? We're going on a shopping trip. Let's find Tess some new shoes.

#419: Tess Knows How to Deal

January 25, 2023

Life with Tess can be pretty darn challenging sometimes. When things go south, there's one method we have that always makes everything better. It requires no equipment, it travels with us wherever we go, and it costs zero dollars.

#418: Start Here

January 18, 2023

So you or someone you love has been diagnosed with Hao-Fountain Syndrome. Now what?

#417: The Box on Our Doorstep

January 11, 2023

A return to skiing. We heard about something amazing from Tess a week ago, and we had to see it for ourselves.

#416: Slide Slide Slippity Slide

January 4, 2023

Tess hits the slopes for another season with Maine Adaptive, her ninth year of skiing. Only this time she decides to make a massive change.

#415: Have Sequins, Will Travel

December 28, 2022

The mud room. It's our point of departure when we leave our house. And in that room, post-Christmas, Tess unleashes a neat-o surprise.

#414: Fidget

December 21, 2022

Certain handheld objects give Tess a sense of peace. They keep her from getting bored.

#413: Germany Part 3

December 14, 2022

The phenotyping study begins for our girl in Germany. How does Miss Tess do?

#412: Germany Part 2

December 7, 2022

We explore Heidelberg, getting some z's but not a lot. And we finally meet up with the scientist who knows more about Hao-Fountain than anyone else.

#411: Germany Part 1

November 30, 2022

Tess takes her first voyage across the Atlantic. At long last, we begin our trip to Germany for the phenotyping study.

#410: A Crucial Waypoint

November 23, 2022

Germany, take two. Let's go see Dr. Schaaf.

#409: Evaluation Exasperation

November 16, 2022

Evaluations. They're a huge part of our life with Tess. They aren't really fun.

#408: Thirteen

November 9, 2022

We have a birthday girl in the house. This week, Tess turns the big one-three.

#407: Tess Clams Up

November 2, 2022

Tess is such a talker. Not with words exactly, but a complex system of sounds and gestures. And one thing that can sometimes cause us a bit of concern is this: when she clams up entirely.