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Featured Articles
There are seventeen posts here — you do not need to read them in order. If this is your first visit, these four will tell you what this site holds.
- 1 Love Is Not Rare: Why I'm Writing About My Son's Tracheostomy Why this site exists at all
- 2 More Than Success: A Startup Executive on Raising a Child With SMARD1 The whole story, from the beginning
- 3 The Children Who Never Leave the ICU (Part 1): A Tracheostomy Decision, and the Choice No One Mentions There is another option besides a tracheostomy
- 4 The Children Who Never Leave the ICU (Part 2): Karma, Blame, and What People Say to Rare Disease Parents What people actually say to rare disease families
Tracheostomy: Full Information
- Tracheostomy Suctioning: Every Two Hours, and Every Hour When He's Sick August 2, 2026
- Privacy in the Sunlight: Why I Won't Tell Any Family What to Choose August 28, 2022
- What Is Intubation? Why Can It Eventually Lead to a Tracheostomy? April 2, 2020
- The Children Who Never Leave the ICU (Part 1): A Tracheostomy Decision, and the Choice No One Mentions February 17, 2020
Daily Care
- Four Years to a Christmas Party: What It Takes to Get a Ventilator-Dependent Child Out the Door December 13, 2022
- Bath Time with a Tracheostomy: The Portable Tub Trick That Solved It February 14, 2021
- Our NT$170,000 Custom Stroller: From a Mother's Day Gift to Finally Going Outside October 7, 2020
- Heart Rate 30, After CPR: What Actually Separates a Hospital Ventilator from a Home Ventilator June 7, 2020
- Day 76: A First Birthday Spent in the ICU April 22, 2020
Emotional Coping
- The Doctors Said He Wouldn't See His First Birthday — Here's How Old He Is Now November 2025
- Caregiver Depression: What a Public Confession Taught Me About Getting Through the Dark Days July 12, 2021
- More Than Success: A Startup Executive on Raising a Child With SMARD1 May 1, 2020
- The Children Who Never Leave the ICU (Part 2): Karma, Blame, and What People Say to Rare Disease Parents February 26, 2020
- Love Is Not Rare: Why I'm Writing About My Son's Tracheostomy February 8, 2020