One in a Million: Life Inside Paigeโ€™s Bucket

As a child, I did so many wonderful things โ€” 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 […]

7 mins read

One in a Million: The Energy You Donโ€™t See (ATP1A3 Explained Simply)

As I write and share more about Paigeโ€”g-tube formula, parenting a medically complex child, and training a service dogโ€”Iโ€™m realizing that many of you have very little idea what Paigeโ€™s life is actually like day to day. Paigeโ€™s diagnosis is complicated. Itโ€™s the kind where you might see a picture of her and think, โ€œWow, […]

6 mins read

One in a Million: Discovering Paigeโ€™s Diagnosis

January 25th, 2023 January 25th, 2023 โ€” three years ago, something happened to my 9-week-old baby girl.I almost lost her in my arms. Paigeyโ€”my sweet little girl, who somehow already had sass even as a newbornโ€”was rushed into a Level 1 trauma room at Texas Childrenโ€™s ER. I didnโ€™t even know this hospital existed. I […]

6 mins read

Unfelt Feelings: What Itโ€™s Like Raising a Medically Complex Child

This past week there was a morning I couldnโ€™t keep myself from crying. I was emptying the dishwasher. Every time I looked up at my girl, I felt itโ€”sorrow, worry, fearโ€”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 […]

6 mins read

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 […]

7 mins read