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SED 588: Beach Plus Pica

April 22, 2026

This week, Tess goes somewhere she hasn't been in many years, a place we've avoided for a very good reason.

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SED 587: You Answered - A Project Centauri Update

April 15, 2026

This week, I called, you answered. An update on Project Centauri, our effort to get 100 new families on Matrix.

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SED 586: A Critical Mistake

April 8, 2026

This week, a critical mistake lands Tess back in the emergency room.

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SED 585: How We're Using AI to Help Cure our Rare Disease

April 1, 2026

This week, I want to tell you about how I'm using AI to help with our foundation's work in our quest for a cure or treatment for Hao-Fountain syndrome.

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SED 584: Tuning In

March 25, 2026

This week, we're delighted as Tess expands her video library into uncharted territory.

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SED 583: Project Centauri

March 18, 2026

This week, we're launching a new initiative that's going to make our Hao-Fountain crew a million times stronger.

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SED 582: Tess Skips Breakfast

March 11, 2026

This week, it's an earth metal, a chemical element, a thing you can use when making fireworks. And hey, maybe we should drink it.

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SED 581: IEP Meeting - All About the Coffee part 1

March 4, 2026

This week, the three letters that have often invoked dread in many a parent are instead making me feel positively gleeful about our girl.

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Tags IEP, special education
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SED 580: Mystery Tess

February 25, 2026

This week, we're working hard to manage some new factors in Tess's life.

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SED 579: Get On Matrix Already

February 18, 2026

This week, we know what we need in order to get to a cure or treatment for Hao-Fountain syndrome. And you can help.

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SED 578: Get Well Soon

February 11, 2026

This week, a couple fun updates about Tess's re-entry after her seizure.

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SED 577: Many Moons

February 4, 2026

This week, Tess has had a life-threatening event, at a time when we're very far from the closest medical facility. Part 5 of 5.

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SED 576: A New Record

January 28, 2026

This week, Tess has had a life-threatening event, at a time when we're very far from the closest medical facility. Part 4 of 5.

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SED 575: Shark Fins

January 21, 2026

This week, Tess has had a life-threatening event, at a time when we're very far from the closest medical facility. Part 3 of 5.

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SED 574: The Woods

January 14, 2026

This week, Tess has had a life-threatening event, at a time when we're very far from the closest medical facility.

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SED 573: Into the Woods

January 7, 2026

This week, Tess has a life-threatening event, at a time when we're very far from the closest medical facility.

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SED 572: Holiday Break

December 31, 2025

This week, we're away on a ski vacation as a family. Let's check in with Tess.

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SED 571: Waiting

December 24, 2025

This week, we're on pins and needles, waiting for a very special milestone. 

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SED 570: Still Ill

December 17, 2025

This week, the illness continues, believe it or not. We'll check in on our girl.

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SED 569: The Cup Is Already Broken

December 10, 2025

This week, someone in our house is considerably under the weather.

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Start at the beginning.

I've been writing about Tess since February 2014.

If you want to read more about my life with Tess, head over to my personal blog, bobigelow.com, and start with the first post.


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