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Welcome to Growing a Person

on Jun 23, 2013

Hello! I’m Carter, Collin, Rory and Owen’s Mama, known to some as Jenni. I started this blog when I was, quite literally, growing our first person in my belly, and now that I have grown four kids and continue to “grow” them every day, it’s where I record the thoughts and moments I want to make sure I remember someday when these crazy kiddos of mine are all grown up. In my spare time I run Perceptivity Studio, a small graphic design firm, from my home, with the four most demanding “bosses” I’ve ever had. Life is all balls up in the air, all the time, but it’s always interesting, and I wouldn’t have it any other way!

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,...

dup15q: 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

Our son Carter is 8, and up until this past Friday, despite the fact that we live in Florida, he had never been to Disney World.  Of course we’ve had good intentions of taking him there, but first it was “we have to wait until baby Collin is old enough to enjoy it too” and then it was “we have to wait until baby Rory can” and then we’d finally picked a date for our first trip when I got pregnant with baby Owen and had the world’s worst morning sickness that made us postpone it again, then another year while he was tiny, and then finally we decided to surprise them with tickets for Christmas and make 2018 our first family trip to meet the Mouse.  After much debate, we got the three-day Florida resident passes, but we decided that starting with just one day at the Magic Kingdom with no hotel stay involved was probably the smartest thing to try,...

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

As any good “biomedical parent” does, I have been doing a lot of research over these past few months since our 3 year old daughter Rory was diagnosed with apraxia.  I’ve learned a lot about apraxia, sensory processing disorder, autism, vaccines, chelation, gut health, inflammation, food intolerances and how our bodies and especially our brains work. I’ve learned about nutrition and vitamins and supplements and how these things can heal so many illnesses just by adding or removing something to or from our diets.  It’s seriously like magic and I wish I could shout the things I’ve learned from the mountaintops…but even just shouting them on Facebook is probably driving a lot of my friends crazy. I’ve become that cuckoo lady who is always talking about things like the Nemechek Protocol…SIBO and olive oil and omega 3-6 balance, birds and...

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...

Rory’s November Apraxia Update

on Nov 19, 2017

When you take on the role of “special needs parent” it’s rarely something you planned for or expected.  I hear all the time, “I don’t know how you do it!” and honestly some days I don’t “do it” very well.  I yell (sometimes very loudly), I say things I regret, I mess up.  But as most special-needs parents will tell you, you have to fight for your child and be their advocate.  Even on my bad days, I know I do this part very well. So that’s what I’ve been doing since my last post.  I’ve been refusing to accept that therapy is the only thing we can do to help Rory, so while spending a crap-ton of time in the therapy waiting room while Rory gets speech and OT for three two-hour blocks a week {with my crazy one year old} I have been reading books, researching, and talking to other moms who are in a similar {lovely} boat...

Ode to Irma

on Oct 4, 2017

By Jenni, Carter and Collin McKay   In early September, twenty seventeen, Something in the Atlantic loomed huge and mean. Hurricane Irma, a category five, A catastrophic threat to property and lives. Over the coming days we predicted and guessed. Denis Phillips (with suspenders) was truly the best. Spaghettis and Euros and NHC tracks, Pretty soon we were all stressed to the max. Irma, Irma the hurricane, Did her best to drive us insane.   Panic! Off to Publix we fled, To buy non-perishables and loaves of bread. To Mobil! To Shell! To Cosco! To Walmart! For gas in our tanks and water in our carts. Evacuation, do we go or stay?! The track says east coast so we’ll be ok. But then a shift west on that fateful Euro. Our stomachs flipped and our eyebrows furrowed. Then another shift west up Florida’s spine. Not the best case, but we’ll still be fine. But then that...