Stronger Every Day
345 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
Homepage Apple Podcasts Google Podcasts Overcast Castro Pocket Casts RSS feed
Episodes
#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
#338: Take a Dip
July 07, 2021 05:22 - 5 minutes - 8 BytesTess thrives on routine. Places she knows well. So when we take her on the road, there's one thing that she reliably responds to. Tess goes on a long trip, of almost 1000 miles. Here's how we kept her chilled out while on the road. 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
#337: The John Wilson Pyles Memorial Award
June 30, 2021 05:04 - 8 minutes - 11 BytesA sunny June day in Maine. A parade of 11 and 12 year olds. Tess mixing it up, in line with everyone else. And a special award, just for her. Tess finishes fifth grade and makes a permanent mark on the school. 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
#336: There Are No Days Off
June 23, 2021 05:04 - 13 minutes - 16 BytesGrit. It's a quality that kids need in order to make things happen in their lives. But of course, you can't teach it. What happened this spring. On a series of fields. In Portland. 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
#335: This Is Gonna Cost Ya - Part 2 of 2
June 16, 2021 05:16 - 12 minutes - 16 BytesYou're at work. Can't focus. Need a coffee. Just drank a full cup, still can't focus. What exactly is your deal, man? A look at the INdirect costs of Hao-Fountain Syndrome. What impact does it have, and does anyone other than economists care about this sort of thing? (Spoiler alert: they should.) 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
#334: This Is Gonna Cost Ya - Part 1 of 2
June 09, 2021 05:50 - 15 BytesEver try to do a big math problem on an old-school calculator? You type in a bunch of huge numbers and multiply them, and you get that weird E off to the side? Yeah. A look at the direct costs of Hao-Fountain Syndrome. How does it hit our wallet? 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
#333: Astute Traveler
June 02, 2021 05:48 - 9 minutes - 12 BytesIt's valuable to take a little break from travel and then see what you notice. This week, we took Tess across state lines. What we saw was fascinating. 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
#332: Let's Get (a) Physical
May 26, 2021 05:32 - 10 minutes - 13 BytesTess has a bunch of doctors. This week I took her for a checkup with her pediatrician. Let's check in with our T-Bird, shall we? I take Tess for her annual physical. We attempt to take her blood pressure. Hilarity ensues. 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
#331: Miss Behaving
May 19, 2021 05:17 - 5 minutes - 8 BytesIn our house, we have two things we've started to say much more often during the pandemic. I share our two pandemic sayings, and during our weekend getaway, Tess presents a few challenges. 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
#330: Shellshocked
May 12, 2021 05:59 - 11 hours - 14 BytesThis is not a drill. Nor is it a dream. I'm outside of my house. And I'm surrounded by people. I re-enter the world, after being on pandemic lockdown for fourteen months. It's a bumpy re-entry. 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
#329: The Funny Lady Returns
May 05, 2021 05:48 - 6 minutes - 8 BytesIn these times, we all gotta laugh more. Laughter's good for ya. Almost like some kind of, I don't know, best medicine. And this week we were thrilled to see Tess go into peals of laughter.
#328: The Machine Is On
April 28, 2021 05:11 - 6 minutes - 9 BytesBuncha new stuff happening. An emerging sign of Tess's overall happiness, a plan we've hatched to meet up, and recent discoveries around the globe.
#327: The Lion's Paw
April 21, 2021 05:05 - 8 minutes - 10 BytesYou know the old story of Androcles and the lion. Remember? The lion, arguably one of nature's fiercest creatures, has been laid low by a thorn in his paw. And Androcles helps him get it out.
#326: No Soup for You
April 14, 2021 05:06 - 9 minutes - 12 BytesWe took something away from Tess. Something she deeply loved. We hope she can forgive us eventually.
#325: Shot
April 07, 2021 05:04 - 7 minutes - 10 BytesOrange Julius, Chess King, and KB Toys. Today I'm thinking of all these mainstays of shopping malls from my childhood. Because my travels today are taking me to a totally 80s mall.
#324: It's Go Time
March 31, 2021 05:45 - 13 BytesI have a thrilling announcement that I've been waiting for months and years to share with you. At long last, after many false starts, it's go time.
#323: Tess Gives Us a Scare
March 24, 2021 05:21 - 10 minutes - 13 BytesFor Tess, you gotta have a safety system. Plus a backup. But what do we do if both fail--the system and the backup?
#322: Nacho Nacho Man
March 17, 2021 05:48 - 8 minutes - 11 BytesShe's been a paragon of patience. A real gem. But it's safe to say that Tess has had enough.
#321: The Endocrine System
March 10, 2021 06:54 - 10 minutes - 13 BytesThe fine folks at Feedspot have featured this podcast among the Top 15 Stay at Home Dad Podcasts You Must Follow in 2021. Not sure if they're in any order, but I'm coming in at 2 on the list of 15. https://blog.feedspot.com/stay_at_home_dad_podcasts/
#320: RDD in the 207
March 03, 2021 06:13 - 8 minutes - 11 BytesOnce a year as a planet, we take a day to honor all rare diseases. It's traditionally been a time for us to climb up to the highest tower we can find and shout USP7 for the entire day. Until we lose our voices, basically. But in 2021 we did something different.
#319: The T-Bird Learns from Marvel Villains
February 24, 2021 06:14 - 10 minutes - 13 BytesTess's disease makes a bunch of her systems go a bit haywire. But there's one system that we're doing okay with managing. And it all comes down to getting a certain test for our girl. A test that hasn't always been easy.
#318: Level Up
February 17, 2021 06:20 - 9 minutes - 12 BytesWe've often said that vacations are the times when Tess takes steps forward. When she unleashes a new skill or ability. When she levels up. And this week was no exception.
#317: Tess Makes Two Sounds
February 10, 2021 06:35 - 8 minutes - 10 BytesPart of Tess's disease is challenges with language. But our girl made two sounds this week that made it very clear what she was trying to say.
#316: Being There
February 03, 2021 06:41 - 11 minutes - 14 BytesHave you, Tess Army, ever thought about the title of this show? Let's do that together today, shall we?
#315: The First Words of the Morning
January 27, 2021 06:48 - 7 minutes - 10 BytesTess has some favorite places in the world. And this week she returned to one of them after a long absence.
#314: Sriracha
January 20, 2021 06:16 - 6 minutes - 8 BytesI like food. I like spicy food. And this week I whipped up a bowl, brought the heat, and watched a certain someone steal my eats.
#313: It's a Mistake
January 13, 2021 06:41 - 7 minutes - 10 BytesAs a result of all this, all this that's happening, well, we're all kinda sloppy. Yes, even you. But it's okay.
#312: B and P
January 06, 2021 06:18 - 8 minutes - 11 BytesTwo special people. They live not too far away but also not close. They thought about our Tess this week and it meant a lot to us.
#311: See Ya, 2020
December 30, 2020 06:55 - 7 minutes - 10 BytesPeople have some choice words for this year of 2020 as it ends. Most of which I shouldn't repeat on this here podcast, in case your kids are listening. But despite this year's challenges, we're choosing to look at a different side of it all.
#310: Better Than a Walkman
December 23, 2020 06:19 - 5 minutes - 8 BytesSometimes you're tired. And sometimes, when you're tired you just try something because you don't know what else to do. And once in a while, that thing you try turns out to be just right.
#309: Olfactory Adventures
December 16, 2020 06:11 - 5 minutes - 8 BytesVery few things are as precious in our household as our morning cup of coffee. And very few things are as sad as when it gets spilled. Nevertheless, these days we're bringing our cups as close to Tess as we can.
#308: Tested
December 09, 2020 06:46 - 11 minutes - 14 BytesSince March 13, Tess has gone almost nowhere. She's been on total pandemic lockdown. Except there's one place she's been going, in person, fairly regularly.
#307: The Place to Be
December 02, 2020 06:17 - 5 minutes - 7 BytesTess seems to have figured out one of the secrets of getting through this pandemic. Let's check in with her.
#306: The Reservoir
November 25, 2020 06:55 - 7 minutes - 10 BytesAt Thanksgiving time, I feel like the world's divided into two--you either watch football or you don't. And in case you're looking for something to watch other than the big game, I got something for ya.
#305: Choppin Broccolay
November 18, 2020 06:13 - 12 minutes - 15 BytesOur kitchen's where we spend about 90 percent of our waking hours. It's Tess's fave place for sure. What exactly is our girl doing there, when she's not eating?
#304: Oddly Satisfying
November 11, 2020 06:38 - 7 minutes - 9 BytesAnother week and Tess has just celebrated another birthday. She parties in style.
#303: Sorry, I Have to Ask
November 04, 2020 06:45 - 8 minutes - 11 BytesA fire with some friends warms our bones. And our hearts. And then we have a rather complicated phone call.
#302: Halloween Is Cancelled
October 28, 2020 05:54 - 8 minutes - 11 BytesWe've finally figured out an annual Halloween activity that works great for Tess. When it's cancelled this year, what can we do instead?
#301: The Questions Never End
October 20, 2020 05:54 - 10 minutes - 13 BytesIf you don't have answers for a really long time, you come with questions. And those questions multiply as the years go by.
#300: Chicago, in Your Living Room
October 14, 2020 05:13 - 13 minutes - 16 BytesWe shoulda been in the Windy City this week. And we weren't. But we did go to a place that made a difference and moved the needle.
#299: The Square Package
October 07, 2020 05:43 - 9 minutes - 12 BytesOne thing happened this week that boosted my mood and helped me immensely. And it began with a square package.
#298: Old Man Sounds
September 30, 2020 05:20 - 8 minutes - 10 BytesThis week we're walking up steps, counting days, giving ourselves a break. And I'm making old man sounds.
#297: Baba Ganoush
September 23, 2020 05:23 - 10 minutes - 13 BytesLet's get real. Let's talk eggplant. And also about ways that I can feel better in my head.
#296: All the Cool Kids Are Doing It
September 16, 2020 05:54 - 6 minutes - 9 BytesTess succumbs to peer pressure. In the best possible way.