Stronger Every Day: For Parents of Children with Rare Diseases

Tess has come a long way through physical therapy. Learning to walk. Loosening her upper body and reaching upwards over time. Going up and down stairs. But there's one thing she just won't do. New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever .   My blog about our life with Tess More information about Hao-Fountain Syndrome or USP7  

Tess is out of school for the summer. Let's go do something fun with our girl. New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever .   My blog about our life with Tess More information about Hao-Fountain Syndrome or USP7

It is our long-awaited week off in the summer. It's our turn at the island house we share with my wife's siblings. And just about every moment Tess is trying to tell us something very specific. New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever .   My blog about our life with Tess More information about Hao-Fountain Syndrome or USP7  

We're concluding our series about travel with our girl . She attends a party, tries to sleep, and at the end of it all gets back in the car. New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever .   My blog about our life with Tess More information about Hao-Fountain Syndrome or USP7  

Over the years, we've learned about what works when we travel with Tess. We're still learning. She shows us new ideas all the time. And this voyage is no exception. New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever .   My blog about our life with Tess More information about Hao-Fountain Syndrome or USP7  

Along the highways and byways, there are quagmires wherever you look. The filthy bathroom in Hampton, New Hampshire. The police speed trap in Chicopee, Mass. And heck, there's an entire stretch of over 130 miles that couldn't be less friendly to our Tess . Our journey to upstate New York begins.  Rest stops between Portland, ME and Skaneateles, NY On this road trip, I'll definitely be playing Eagl...

It's 448 miles to Syracuse, we got a full tank of gas, half a pack of Larabars, it's dark...and we're wearing sunglasses. Hit it. What's the difference between a trip and a vacation ? And which one will this voyage be?  On this road trip, I'll definitely be playing Eagle Eye in the car. It's a highway travel game I invented. The cost: $0.00. Put down your phone and play too. https://www.portlandro...

This episode is decaffeinated , much to our chagrin. And a small creature will make an appearance.  ICYMI:  last week's episode, SED 441, " Tess's Power Plant ," is available here . New to the show and not sure where to begin? I gotcha. Check out the Top 5 Most Downloaded Episodes Ever .   My blog about our life with Tess More information about Hao-Fountain Syndrome or USP7    

With five minutes before go time, Tess makes a move. And all hell breaks loose.  

On the road with the lad. A special trip that I took this week.

Tess is ready to eat. I don't know what time it is, but that statement is true regardless of day or time. Check out my blog post about Tess's diet:  " Here's what we feed Tess. Her diet seems to help with autism, intellectual disability, GI issues, and her speech disorder ."     

Tess's hyperphagia makes an appearance at a birthday party. No zone or man-to-man defense can stop her.  

Certain items have meaning for Tess. They are positively loaded with meaning, so much so that they're like full paragraphs for her. Checking in with Tess and communication.  

You unfortunately hear from time to time about bullying in schools. But one thing you don't hear enough about are the anti-bullies . The people working, day after day, to prevent bullying.  The Cromwell Center of Maine is doing super important work.   Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities. Over 200 film and video t...

I haven't done this in a while, but I am calling upon you , Tess Army. I need you to do something for me. Help us get more patients . You can do it.  Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon...

Tess isn't feeling well . This is highly unusual . Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollecti...

What happens if you go quiet for four years ? Is speaking like riding a bike ? I spend a day with the fine folks at Charles River Labs .  Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. Th...

I take the two girls, Tess and Penny, to a dog park. It is one of Tess's least favorite locations in the greater Portland area.  Ruff! Rough! Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV...

Let's talk about diagnosis day . Daniel made a new film about that day. It's a big day, really.  It's a mix of joy and grief .  Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder...

Spring is in the air. I'm back from a trip, and I got some key USP7 updates for ya, including a check-in with Miss Tess .  What does it mean to miss someone ?  Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku...

In our house is a very  large and extremely heavy object . Tess has found it utterly fascinating for most of her life.  Tickling the ol' ivories .  Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon F...

Tess heads to the eye doctor . For a lonnnnnng appointment. How's this gonna go?  Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world....

It's the end of an era . The final shift of someone who knows Tess and has helped her immeasurably.  Nothing lasts forever, right?  Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Diso...

Counting our chickens before they have hatched. Got an update for ya this week on how Tess fared with her recent bout with Covid .    Sad Tess.  Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire...

A week has just been 86'd . A big, big change of plans in our house for Tess. We've been through this before . Stronger Every Day is sponsored by The Disorder Channel . It's dedicated to rare diseases and other types of disabilities. Over 200 film and video titles, including a few video versions of this podcast. Available for free right now on Roku and Amazon Fire TV. The Disorder Channel. The mos...