Stronger Every Day: For Parents of Children with Rare Diseases

Someone new has joined our family. She's about ankle height, has boundless energy, and is slowly making friends with Tess.

Tess loves dogs. Well, maybe not all dogs.

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 Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/

Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. Click here to join: discord.gg/7UFUPAFs8K

You're muted. Those two words. Part of every zoom call you've ever been on, amirite? If you're on mute, no one can hear what you're saying. Except this one time. Someone definitely heard.

More about Tess's Mixed Receptive-Expressive Language Disorder. And a day when she busted right out of it.

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 Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/

Are you on our Discord server RARE & RELATABLE? It's a 24/7 chatroom for people dealing with rare diseases and other types of disabilities. Click here to join: discord.gg/7UFUPAFs8K

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 for free right now on Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/

To check out Eric Eberhardt's You Are Listening to Los Angeles, head to NTS on YouTube:

https://youtu.be/GsbETaaMWuk

Check out my YouTube Channel: https://www.youtube.com/bobigelow

Learn more about our life with Tess on my blog: http://www.portlandrootsmedia.com/stronger-every-day-blog-1

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, 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.thedisordercollection.com/

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 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.thedisordercollection.com/

Life with this disease can be pretty overwhelming for families. Especially on that day you first get your diagnosis. If that's you, and this is that day, you've come to the right place.

This episode is a great starting point if you or someone you love has just been diagnosed with Hao-Fountain Syndrome or USP7.

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 Roku and Amazon Fire TV. The Disorder Channel. The most rare stories in the world. https://www.thedisordercollection.com/

If you or someone in your family has just been diagnosed with Hao-Fountain Syndrome or USP7, please join our private groups on Facebook or Discord. Click below and then request to join the private group.

Facebook: https://www.facebook.com/groups/969399453182041/

Discord: discord.gg/7UFUPAFs8K

Check out my YouTube Channel: https://www.youtube.com/bobigelow

Learn more about our life with Tess on my blog: http://www.portlandrootsmedia.com/stronger-every-day-blog-1

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 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.thedisordercollection.com/

Join our Discord server, Rare and Relatable! We're chatting on there most days, about all aspects of rare diseases and other types of disabilities. We're having a LIVE event on Rare Disease Day, Feb 28th, at 12pm ET. Click here to join us on Discord: discord.gg/7UFUPAFs8K

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 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 Roku and Amazon Fire TV. The Disorder Channel—the most rare stories in the world. https://www.thedisordercollection.com/

Join our Discord server, Rare and Relatable! We're chatting on there most days, about all aspects of rare diseases and other types of disabilities. We're having a LIVE event on Rare Disease Day, Feb 28th, at 12pm ET. Click here to join us on Discord: discord.gg/7UFUPAFs8K

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 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 Roku and Amazon Fire TV. The Disorder Channel—the most rare stories in the world. https://www.thedisordercollection.com/

Join our Discord server, Rare and Relatable! We're chatting on there most days, about all aspects of rare diseases and other types of disabilities. We're having a LIVE event on Rare Disease Day, Feb 28th, at 12pm ET. Click here to join us on Discord: discord.gg/7UFUPAFs8K