Two fans and a laptop. Tess discovers a new musical genre. What's the verdict?
We explore Philadelphia-based band Remember Sports, specifically the track "Otherwise," from their 2018 record Slow Buzz.
Read MoreTwo fans and a laptop. Tess discovers a new musical genre. What's the verdict?
We explore Philadelphia-based band Remember Sports, specifically the track "Otherwise," from their 2018 record Slow Buzz.
Read MoreI'm a year older. Blowing out the candles on this year's cake, what's on my mind?
Read MoreCVI 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?
Read MoreLet's hop into the car and head out, shall we? We're going on a shopping trip. Let's find Tess some new shoes.
Read MoreLife 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.
Read MoreSo you or someone you love has been diagnosed with Hao-Fountain Syndrome. Now what?
Read MoreA return to skiing. We heard about something amazing from Tess a week ago, and we had to see it for ourselves.
Read MoreTess hits the slopes for another season with Maine Adaptive, her ninth year of skiing. Only this time she decides to make a massive change.
Read MoreThe 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.
Read MoreCertain handheld objects give Tess a sense of peace. They keep her from getting bored.
Read MoreThe phenotyping study begins for our girl in Germany. How does Miss Tess do?
Read MoreWe 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.
Read MoreTess takes her first voyage across the Atlantic. At long last, we begin our trip to Germany for the phenotyping study.
Read MoreGermany, take two. Let's go see Dr. Schaaf.
Read MoreEvaluations. They're a huge part of our life with Tess. They aren't really fun.
Read MoreWe have a birthday girl in the house. This week, Tess turns the big one-three.
Read MoreTess 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.
Read MoreA call for help. A bat-signal in the night sky of life with a rare disease. One man sees the signal. And he answers.
Read MoreWhat is Tess's favorite item from the lavatory? Raise your hand if you think you know the answer.
Read MoreIt's time once again for the great powwow among experts to work on Tess's education. I'm talking, of course, about her IEP.
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