One in a Million: Life Inside Paige’s Bucket
As a child, I did so many wonderful things — road trips, visiting friends in their homes, sleepovers, big vacations. These were the experiences I always imagined I would share with my own children. My husband, who is from another country, dreamed of going back one day and spending long stretches of time there. Before […]
One in a Million: The Energy You Don’t See (ATP1A3 Explained Simply)
As I write and share more about Paige—g-tube formula, parenting a medically complex child, and training a service dog—I’m realizing that many of you have very little idea what Paige’s life is actually like day to day. Paige’s diagnosis is complicated. It’s the kind where you might see a picture of her and think, “Wow, […]
One in a Million: Discovering Paige’s Diagnosis
January 25th, 2023 January 25th, 2023 — three years ago, something happened to my 9-week-old baby girl.I almost lost her in my arms. Paigey—my sweet little girl, who somehow already had sass even as a newborn—was rushed into a Level 1 trauma room at Texas Children’s ER. I didn’t even know this hospital existed. I […]
Unfelt Feelings: What It’s Like Raising a Medically Complex Child
This past week there was a morning I couldn’t keep myself from crying. I was emptying the dishwasher. Every time I looked up at my girl, I felt it—sorrow, worry, fear—all at once. The tears fought, like they always do. I tried to keep moving. I tried to stay busy. But eventually I sat down […]
Home Together with a G-Tube Baby: Learning the Infinity Pump
Bringing a medically complex child home can feel like a second hospital discharge with a newborn all over again. You’re learning things that you never thought you’d have to learn, you’re sometimes confused, and very often overwhelmed. In this blog I will try and alk you through the basics of gtube care at home using […]