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Rory’s May Apraxia Update

on May 5, 2018

It has been the best of times and the worst of times for Rory for the past few months.  Thankfully not in that order.  I’d say we’ve had the BEST few weeks we’ve ever had in a row recently, and I’m attributing that success to Rifaximin. Rory has been on the Nemechek Protocol since last September, a biomedical protocol I wholeheartedly believe in that helps heal the gut and the brain by reducing inflammation using inulin fiber, fish oil and extra virgin olive oil.  We saw gains for the first few months she was on it, and then she plateaued.  It was kind of a major bummer. During that plateau, we had been working on getting more information, so we independently had a micronutrient profile (everything was good except a slight CoQ10 deficiency), full IgE and IgG food allergy testing (allergic to basically EVERYTHING, but especially gluten, soy, eggs, dairy, pork,...

Microduplication 15q:11.2 The Road Not Taken

on Mar 10, 2018

Collin and I were cutting vegetables for a salad on Wednesday evening, making a quick dinner before yet another baseball game in the sea of baseball games that have become our life lately. I was chopping the tomatoes into little pieces when the phone rang and I answered with my clean hand and heard Dr. Sankey’s diminutive voice on the other end. “We got results from Rory’s blood work including the chromosomal microarray analysis and she has a duplication of her 15th chromosome.” It was one of those dividing moments in time when your world gets split into before and after.  One minute you’re doing something so normal and banal and the next your ears are ringing and you are trying to process something so monumental you feel yourself unraveling around the edges. Our 3-year-old daughter has what we now know is an interstitial microduplication of chromosome 15q11.2. Quite a mouthful, huh? ...

Lucky 13 Tips for Surviving Disney World With Special Needs Kiddos

on Feb 11, 2018

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The Nutrition Matrix

on Feb 11, 2018

We’ve all watched the movie The Matrix.  Good ole Keanu (whoa!) as Neo realizes that he has been living in this made up world and everything he knows gets completely flipped upside down.  The deciding moment is this scene: You take the blue pill—the story ends, you wake up in your bed and believe whatever you want to believe. You take the red pill—you stay in Wonderland, and I show you how deep the rabbit hole goes. Remember: all I’m offering is the truth. Well hello, my name is Neo (Je-Nni-eo?), and I have officially taken the red pill and gone down that rabbit hole. I spent a solid 37 years of my life living the standard American life, eating the standard American diet (for which the acronym is appropriately SAD).  It was easier–and way less scary–than the world we’ve been occupying for the past few months, where I’ve started to feel like some...

Apraxia, Autism and “Neurological Gumbo”

on Jan 5, 2018

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