The Trials Have Begun! – and “How to Toddler-Proof Your Hotel Room Door”

Thursday night last week, I received a distressing phone call.  My grandmother had been taken to the hospital, and my aunt was told that “it didn’t look good” and that she should “call the family in”. As it was late, the kids were asleep, and Darrel and I were both … Continue reading

FPIES and Nature Apparently Don’t Mix

On Monday I talked about Zac’s ongoing FPIES reactions, and how he’s had some “unidentifiable somethings that LOOK like they might be food, but really, I don’t know” in his diaper that were our only clue as to what might be causing his current acute/chronic reactions. And we really did … Continue reading

Little Boy Blues

It’s been a while since I really just wrote about what is happening with the boys, so here’s the latest: Jed is doing well on our Fructose Malabsorption diet, and we’re trialing him on different foods to see how he handles them.  So far, we’ve tried coconut shreds, coconut milk, … Continue reading

Rare Disease Day

  Today is Rare Disease Day. This is a worldwide initiative to bring greater awareness to those who suffer with rare diseases.  Rare Disease Day in the United States is sponsored by NORD (National Organization for Rare Disorders) and Rare Disease Day Worldwide is sponsored by Eurodis (Rare Diseases Europe). … Continue reading

FPIES Eyes

Over the weekend, one of the other FPIES Mama’s on the boards mentioned taking her children to the circus.  She had received special permission to bring food for her FPIES kiddo, but her kids really really really wanted cotton candy! Fortunately, she remembered to check the ingredients first, which was … Continue reading