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Our family just took our first big trip in over three years, to Montreal and Quebec. We learned a lot. And I'm gonna give you some tips about traveling with autism, so you know what worked for us with our Tess. Tess did great on this voyage. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of …
 
You may know that Tess didn't walk until she was five. She wore orthotics, or braces, for years. And now, at age 12, she's back in braces. Working on helping Tess walk better. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few vide…
 
Does the word travel instill fear in you? Do you wish you could benefit from the brilliance of others who have hacks for traveling? If so, you're in luck. This week: more travel hacks for ya. More tips for your voyages. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100…
 
Travel. Remember that? Been a while since we went anywhere, but I have some favorite hacks that have helped our family in voyages past, and I'd love to share them with you. Skip. The. Line. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, includ…
 
On this holiday weekend, something extraordinary happened with our Tess. I wish you coulda seen it. Tess's pain threshold is something else. We think it could be part of her genetic disease, Hao-Fountain Syndrome. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film …
 
We head to Germany in a month. We're trying to plan for everything. And there's one potential outcome that has us a bit concerned. What would it look like to keep Tess in a hotel room--in Europe, not the US--for a week or more? Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. …
 
If you access the American health care system 40-50 times in a year, you're going to have to deal with some nonsense when it comes to insurance companies. Up until recently, I woulda said I'd seen it all. But now our insurance company has created an issue I've never witnessed before. Stronger Every Day is sponsored by The Disorder Channel. It's ded…
 
This is your captain speaking. We're gonna be cruising at 35,000 feet here. I note that today we're happy to welcome aboard Miss Tess Bigelow. She's been seated in a snacks and videos row. Our trip to Germany is coming up. Number of times Tess has left the United States: 0. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to …
 
Let's check in with the T-Bird and our new pup. How goes it so far? Tess and Penny are getting to know each other. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available for free right now on R…
 
I recently had more time away from Tess than I've had in several years. Upon my return, we decided to listen to a distant city together. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Available f…
 
Tess has a certain favorite activity. She's loved it for years. But as soon as you start doing that activity with her, she shuts it down. What is up with this? What happens with Tess and books? Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, in…
 
Another year, another IEP team meeting. Our Tess is in sixth grade, and we learned something new. Something that we shoulda known a long time ago. Why isn’t there a SportsCenter-style clip show for the best IEP moments? Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100…
 
We're on a mountainside. Tess is raring to go, to get going on skiing once again. Dressed and ready. How does she do? This episode includes: a great escape, some laughs, and another installment of Where Does It Go? Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases and other types of disabilities. Over 100 film…
 
A snowstorm blankets Maine. And one of Tess's favorite places opens back up for business. Sit back and I'll tell you all about Tess skiing with Maine Adaptive, on a mountaintop. Ever thwarted by car key gnomes? Yeah, me too. This week: a brand-new segment called WHERE DOES IT GO??? Stronger Every Day is sponsored by The Disorder Channel. It's dedic…
 
There are times when Tess becomes a ball of tension. Jaw clenched. Brow furrowed. Fists of fury. How can we help her chill out? When Tess is tense, it affects everything--her mood, posture, and behavior. We're looking for ways to help her relieve that tension. Stronger Every Day is sponsored by The Disorder Channel. It's dedicated to rare diseases …
 
Our convos with Tess tend to be short. Usually they end after one word. But today was different. Talk, talk. Great news! You can get your very own Stronger Every Day merch right now. T-shirts, mugs, masks, you name it, you can get it. Tess's smiling face and this podcast's logo, or a message telling the world I'm in the Tess Army. Head to my storef…
 
As our year draws to a close, we stay in and watch the snow fall. And Tess has one more surprise up her sleeve. This podcast is sponsored by The Disorder Channel. It’s 100% devoted to programming about rare diseases and other types of disabilities. You can add it for free right now on Roku and Amazon Fire TV. The Disorder Channel—the most rare stor…
 
Let's do one final 2021 check-in with our girl, shall we? Happy holidays! This podcast is sponsored by The Disorder Channel. It’s 100% devoted to programming about rare diseases and other types of disabilities. You can add it for free right now on Roku and Amazon Fire TV. The Disorder Channel—the most rare stories in the world. https://www.thedisor…
 
What can we know for sure? Are we in a simulation? Is anything real? And what exactly are Tess's abilities with language? Tess has been stuck in the same place for about four years. This podcast is sponsored by The Disorder Channel. It’s 100% devoted to programming about rare diseases and other types of disabilities. You can add it for free right n…
 
Once upon a time, three men had an idea. It was completely insane. It probably shouldn't have worked at all. The birth of Metro Metro, back in '02. This podcast is sponsored by The Disorder Channel. It’s 100% devoted to programming about rare diseases and other types of disabilities. You can add it for free right now on Roku and Amazon Fire TV. The…
 
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. Dealing with a common symptom of HFS: constipation. The answer? Pelvic floor PT. This podcast is sponsored by The Disorder Channel. It’s 100% devoted to programming about rare diseases and other typ…
 
I felt pretty spoiled last weekend. Because I had some QT with Tess. Solo time with the T-Bird. This podcast is sponsored by The Disorder Channel. It’s 100% devoted to programming about rare diseases and other types of disabilities. You can add it for free right now on Roku and Amazon Fire TV. The Disorder Channel—the most rare stories in the world…
 
You know those punch cards? You've seen 'em at your cafe, maybe, or your favorite sandwich shop. Buy 11 and your 12th one is free? I think we need that for hospital trips. I don’t have a ton of answers. But one thing I do know is that it’s good to set Tess’s brother Dana free to do his own thing sometimes. This podcast is sponsored by The Disorder …
 
Ninety minutes. A soccer field. And a gathering of some of Tess's greatest champions. It's extraordinary to assemble members of the Tess Army in person. This podcast is sponsored by The Disorder Channel. It’s 100% devoted to programming about rare diseases and other types of disabilities. You can add it for free right now on Roku and Amazon Fire TV…
 
Check the box. Yeah, it's on the form there. Hao-Fountain Syndrome. Should be under H. Oh, it isn't there? A frustrating afternoon of trying to get Tess's blood into our USP7 biobank. This podcast is sponsored by The Disorder Channel. It’s 100% devoted to programming about rare diseases and other types of disabilities. You can add it for free right…
 
Taking a major step in moving toward a cure for Hao-Fountain Syndrome. Starting something up that will let us collaborate like never before. We're starting a biorepository through COMBINEDBrain, a consortium of other foundations trying to cure neurodevelopmental disorders. This podcast is sponsored by The Disorder Channel. It’s 100% devoted to prog…
 
For us fall is about new beginnings. New school year. New teachers. And new pursuits ahead for our foundation. Let me tell you all about it. What's the one thing we make sure to tell Tess's new teacher each fall? Tune in to this ep and find out. This podcast is sponsored by The Disorder Channel. It’s 100% devoted to programming about rare diseases …
 
Every month or so, we find an average of two new USP7 patients. And those add up over time. And eventually, there are a lot of patients. How many, you ask? Good question. A major milestone for our patient group. Tune in, and buckle up. We're in for quite a ride together over the next year. This podcast is sponsored by The Disorder Channel. It’s 100…
 
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