Last week, I wrote an article about thriving as the parent of special needs. In it, I talked about “finding your tribe”; a group of people in the same situation as you that you can share, commiserate and celebrate with. I said they would make your life better, even if you never … Continue reading
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
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
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
…at least, when their Mama doesn’t pay enough attention to what they are teething on! As a modern, good mother, I made sure to get lots of solid wood toys for my boys to play with. Like Jed’s Thomas Trains, and the entire wooden layout. Zac has been delivering tiny, … Continue reading
Sunday night was a bad one, y’all. Despite our new Food Protocols, at 6:00 p.m. on Sunday night Mr. Happy found a piece of breakfast sausage on the dining room floor and put it in his mouth. I immediately started swiping, while he gagged and coughed around my finger. … Continue reading
Do you know one of the worst things about FPIES? It renders you completely helpless. Impotent. Yesterday I changed 8 bloody, mucousy, smelly diapers for Mr. Happy. He screamed in pain immediately after pooping each time; by the end of the day, he was screaming in pain on the … Continue reading
It’s been a little “heavy” around here for the last couple of days, so I thought I’d lighten things up a bit. Sometime last year, the Geek and I were discussing all the random things we’ve said since becoming parents that we NEVER thought we would say. Not so much … Continue reading
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
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
