Stronger Every Day
338 episodes - English - Latest episode: 4 days ago - ★★★★★ - 71 ratingsI quit my law job to be at home with my kids. Turns out our daughter Tess has a rare genetic disorder called Hao-Fountain Syndrome, or USP7. She's different. And now, so is everything else. #USP7 #HaoFountainSyndrome #autism
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Episodes
#388: The Rain Song
June 22, 2022 05:43 - 4 minutesThe 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. Av...
#387: Travel Hacks - Part 2 of 2
June 15, 2022 05:48 - 6 minutesDoes 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 C...
#386: Travel Hacks - Part 1 of 2
June 08, 2022 05:36 - 6 minutesTravel. 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...
#385: The Reaction
June 01, 2022 05:25 - 10 minutesOn 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 Channe...
#384: Prepping for an Extended Stay
May 25, 2022 05:10 - 7 minutesWe 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 Dis...
#383: Sleepytime T
May 18, 2022 05:48 - 5 minutesThere's not a parent alive who doesn't wistfully talk about the days 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 vid...
#382: Thanks for Thinking of Me but I Already Have a Job
May 11, 2022 05:12 - 12 minutesIf 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. Avai...
#381: Decked Out
May 04, 2022 05:47 - 9 minutesDid you know that there are five seasons in Maine? There are. This one, the one after winter and before spring, is called mud season. It's a great time to take Tess shopping for summer clothes. 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 ...
#380: Shhhh
April 27, 2022 05:13 - 6 minutesLet's take a field trip with Miss Tess, shall we? It's spring break, and she knows just the place she wants to go. 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...
#379: Pickles
April 20, 2022 05:25 - 6 minutesI 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.thed...
#378: Tess Has a Passport
April 13, 2022 05:16 - 7 minutesThis 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 f...
#377: Four Seven
April 06, 2022 05:43 - 5 minutesFour parents hatched a plan in the state of Texas in 2017. We've come a long way since then. And we need your help this week. 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/haowewalkhao...
#376: Laugh It Up, Fuzzball
March 30, 2022 05:34 - 5 minutesLet'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 Discor...
#375: Penny
March 23, 2022 05:44 - 9 minutesSomeone 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://ww...
#374: Homeroom
March 16, 2022 05:17 - 10 minutesYou'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 podca...
#373: Tess Is Listening to Los Angeles
March 09, 2022 06:24 - 9 minutesI 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/ T...
#372: The NeverStarting Story
March 02, 2022 06:04 - 6 minutesTess 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 stori...
#371: An IEP Revelation
February 23, 2022 06:06 - 6 minutesAnother 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 ...
#370: Start Here
February 16, 2022 06:00 - 13 minutesLife 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 versi...
#369: Skis to the Kingdom - Part 2 of 2
February 09, 2022 06:55 - 12 minutesWe'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 Channe...
#368: Skis to the Kingdom - Part 1 of 2
February 02, 2022 06:26 - 17 minutesA 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 dedicated to rare diseases and other types of disabilities. Over 100 film and video titles, including a few video versions of this podcast. Availab...
#367: Relax This Instant
January 26, 2022 06:45 - 7 minutesThere 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...
#366: Back and Forth
January 19, 2022 06:52 - 8 minutes - 11 BytesOur 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 storefront now and get your merch of choice. Thanks in advance for supporting this show. Click here to get your merch now: https://bit.ly/tesspod ...
#365: I'm Walkin Here
January 12, 2022 06:37 - 12 BytesA fresh set of eyes looks at an activity Tess does every day. There are some surprises, including one that Miss Tess springs herself. We make an exciting discovery at PT. Okay, *two* discoveries. 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.thedisordercollection.com/ Me...
#364: Sneakiness
January 05, 2022 06:21 - 6 minutes - 8 BytesAs 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 stories in the world. https://www.thedisordercollection.com/
#363: Happy Holidays
December 29, 2021 06:35 - 4 minutes - 6 BytesLet'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.thedisordercollection.com/
#362: Things We Know (about Tess's Language)
December 22, 2021 06:27 - 6 minutes - 9 BytesWhat 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 now on Roku and Amazon Fire TV. The Disorder Channel—the most rare stories in the world. https://www.thedisordercollection.com/ Join our Discord...
#361: MetroMetroLand
December 15, 2021 06:07 - 15 minutes - 19 BytesOnce 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 Disorder Channel—the most rare stories in the world. https://www.thedisordercollection.com/
#360: A New Kind of PT
December 08, 2021 06:04 - 11 minutes - 14 BytesThere'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 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...
#359: Grateful
December 01, 2021 06:32 - 6 minutes - 9 BytesThe forecast: 35 and couch-y. Please join me in some holiday loafing. We've solved Thanksgiving. And this year we've got lots to be grateful for. Merch! You can get your Stronger Every Day merch right now. T-shirts, mugs, masks, and more. Click here to buy your swag now: http://tee.pub/lic/UFJwMSVtdUU 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...
#358: Lady Man Club
November 24, 2021 06:35 - 7 minutes - 10 BytesI 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. https://www.thedisordercollection.com/ Check out my YouTube Channel: https://www.youtube.com/bobigelow Learn more about our life with Tess o...
#357: Sleepless
November 17, 2021 18:03 - 6 minutes - 9 BytesI'm feeling rather broken at the moment. And I'm stumped about how to get out of it. I am pretty sure I have PTSD. Here is what it looks like. 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.thedisordercollection.com/ Check out my YouTube Channel: https://www.youtube.com/b...
#356: Vaxxed
November 10, 2021 06:07 - 8 minutes - 11 BytesWe've all been feeling it. Time is behaving strangely, no question. But one especially long wait for the T-Bird has finally come to an end. Someone finally got her coronavirus vaccine. 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.thedisordercollection.com/
#355: That's the Breaks
November 03, 2021 05:38 - 12 minutes - 16 BytesYou 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 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 A...
#354: Uh-huh
October 27, 2021 05:25 - 9 minutes - 12 BytesI got in fights. In France. Mostly because I was American. So I did my best to blend in. Tess is using her skills to blend in, language-wise. 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.thedisordercollection.com/ Check out my YouTube Channel: https://www.youtube.com/bo...
#353: The Tess Army Gathers
October 20, 2021 05:50 - 8 minutes - 10 BytesNinety 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. The Disorder Channel—the most rare stories in the world. https://www.thedisordercollection.com/ Check out my YouTube Channel: https://www.you...
#352: Hello My Friend
October 13, 2021 05:42 - 11 BytesOne of the hardest things about raising a kid with a rare disease is raising their neurotypical sibling at the same time. I talk to other parents of kids with rare stuff or other kinds of disabilities, and there's this pattern. The siblings grow up fast. Way faster than we want them to. They see things and hear things. They feel the stress in the household, even if you try to hide it. This podcast is sponsored by The Disorder Channel. It’s 100% devoted to programming about rare diseases an...
#351: Can't Check the Box If You're Rare
October 06, 2021 05:57 - 10 minutes - 11 BytesCheck 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 now on Roku and Amazon Fire TV. The Disorder Channel—the most rare stories in the world. https://www.thedisordercollection.com/ Check out my ...
#350: Getting Old
September 29, 2021 05:12 - 10 BytesI have these routines with Tess. Things that we do together that always work. Okay, maybe not always. This week: a story of how Tess is like pretty much all other 11-year-olds on earth at this point. 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.thedisordercollection.co...
#349: Take It to the Bank
September 22, 2021 05:12 - 9 minutes - 12 BytesTaking 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 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—...
#348: Here Are Your Friends
September 15, 2021 05:32 - 8 minutes - 11 BytesFor 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 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 t...
#347: One Hundred
September 08, 2021 05:39 - 7 minutes - 9 BytesEvery 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% 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 ...
#346: Done-zo
September 01, 2021 05:28 - 8 minutes - 11 BytesIf you've come to hear a cute story about Tess being a sweetie and us learning something new about her as summer ends, well, you've come to the wrong place. Taking a page from my friend Effie Parks this week. Telling it like it is, and I don't have a lesson or moral for you. The end of summer is one of our hardest times with Tess. 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 ...
#345: Taking a Tour
August 25, 2021 05:30 - 5 minutes - 8 BytesWe've reached the last days of summer, but we're not quite back to school yet. Let's check in with Miss Tess. Tess tours her new school, where she'll be starting 6th grade. Stronger Every Day is sponsored by The Disorder Channel, now available for free on Roku and Amazon Fire TV. The Disorder Channel - the most rare stories in the world. https://www.thedisordercollection.com/
#344: Twenty Percent More Tess
August 18, 2021 05:09 - 6 minutes - 8 BytesThis podcast is sponsored by The Disorder Channel. The best rare stories in the world. thedisorderchannel.com After her seizure last week, we're seeing a different Tess. What does our girl's behavior look like after the seizure? One week out. Some major differences in our girl.
#343: Tess in the ER, Redux
August 11, 2021 05:53 - 15 minutes - 18 BytesTess hasn't had a seizure in over three years. Until this week. We are back in the ER with our Tess.
#342: The Big Kid
August 04, 2021 05:53 - 5 minutes - 7 BytesIn spite of how we sometimes feel frozen in time, we're kind of flabbergasted to realize that Tess will enter sixth grade this fall. What we're working on right now to get her ready for the big leagues (middle school).
#341: No Thanks, Olympics
July 28, 2021 05:16 - 5 minutes - 7 BytesThe Olympics. The stories of the athletes and how they got there. Their families rooting them on. The medal ceremonies, the whole deal. Everyone loves the Olympics. Well, maybe not everyone. Tess gets bored. Looks around. Decides to say something. Yeet!
#340: Back in the Saddle
July 21, 2021 05:28 - 13 BytesI return to one of my favorite places in Portland. And I get a troubling text about Tess. This week, I relate the components of a freakout.
#339: The Hour
July 14, 2021 05:53 - 5 minutes - 8 BytesA fresh pot of coffee. The sun is coming up. I'm about to sit down for an uninterrupted hour of solid work. And then, it gets interrupted. The early morning hours are sacred for my wife and me. We guard them fiercely. Hey! Play my travel game on the road. It’s called Eagle Eye, and you can find it here: http://www.portlandrootsmedia.com/eagleeye