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One Step Forward, Another Step Backward

Austen, my 6-year-old daughter with Dravet syndrome, went to the neurologist at the end of September. It was the first time we’ve seen her in the office since the COVID-19 pandemic started. The appointment went smoothly, and Austen barely cried during her lab work. We were so excited when…

We Experienced a COVID-19 Scare

Over the last year, we have pretty much kept our family in a constant state of quarantine, fearing what would happen if Austen, our 6-year-old with Dravet syndrome, caught the coronavirus. When something as small as the adenovirus sends her to the PICU, the idea of the COVID-19 virus…

Why Austen Is Not on the Ketogenic Diet for Seizures

“Have you tried the ketogenic diet?” I’ve been asked this question more times than I can count. When people learn that we tried cannabis therapy with Austen, my 6-year-old with Dravet syndrome, before medications like Onfi (clobazam) and Fintepla (fenfluramine), they always want to know if we have tried…

We Take Another Step Toward ‘Normal’

Ever since I have become a mom, I have always chosen to safely co-sleep with my babies until they were weaned. It might not be what works for every family, but for my family, it was the best choice. My oldest daughter, Addisen, 13, weaned when she was 2…