Our family is totally packed, ready to jet off to Germany for the phenotyping study and a massive family conference. And at the eleventh hour, there's a slight curveball.
A large disappointment, but many many silver linings.
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. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K
It comes around every year. At the very beginning of summer, and also at the end. It strikes fear into the hearts of parents everywhere. The blank space in the calendar.
What can Tess do when she's not in school?
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. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K
The weather in Maine has been all over the place lately. One day it's in the 80s, next day you're putting on a fleece vest and wool socks. Let me tell you about some quality time I had with Tess one rainy day recently.
Kick off your shoes for a minute and watch the rain with Tess and me.
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. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K
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 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. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K
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, 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. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K
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 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. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K
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. 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. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K
There's not a parent alive who doesn't wistfully talk about the day when their kid used to nap. All the laundry that they used to be able to do, the household chores, et cetera. This week, Tess hit the hay in the middle of the day for the first time in many years.
What effect does the COVID booster have on our Tess?
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. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K
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 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. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K
Spoiler alert: Tess likes shopping. Still not a fan of waiting rooms, though.
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. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K
Où est la bibliothèque?
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. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K
I like pickles. Pickled things of all sorts, but definitely your standard dill pickles in the jar. Key phrase being: in the jar.
Fun with Tess and hyperphagia.
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. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K
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 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. We even have a closed channel for Hao-Fountain / USP7 families. Click here to join: discord.gg/7UFUPAFs8K
We're hitting the 5-year mark for our foundation. I'm running a virtual 5k in honor of Tess and the other patients, to fund our 2022 research grant. Please donate today--no amount is too small. You've been gracious in supporting our phenotyping study and our 2021 grant (both of which are funded and underway.) Thank you so much!
https://usp7.salsalabs.org/haowewalkhaowerun2022/p/bobigelowsteamtesspage
Tess Army! Who's up for a virtual 5k (walk or run) in the next 2 months? Join my team and help raise money for us. We need to raise funds for our 2022 grant, and YOU can help. Please click to join today! #TessArmy #USP7 https://usp7.salsalabs.org/haowewalkhaowerun2022/t/teamtess
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 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
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