Facebook

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

...

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

...

Dear Carter at 8, Collin at 6, Rory at 3 and Owen at 1

on Nov 24, 2017

Hello my sweet children.  It has been YEARS since I wrote one of these state-of-the-union family posts, and I figured it was about time to do another one. Carter Glenn, how in the world are you already 8 years old??  You have grown so much, physically and mentally, since my last update.  You’ve always been tall for your age, but now you stand a head taller than everyone on your baseball team, and you’re going to pass me by sooner than I would like.  Your hair grows like crazy and you always manage to have that cool surfer boy look since you refuse to cut it short.  And your brain, oh my goodness, you blow me away every day!  We arranged for you to go from 2nd grade to the 4th grade advanced math class every day and you are loving that and handling it quite well despite our nerves.  (You could probably go to the 6th grade class, but I don’t think ANY of us are ready...