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!

Stem Cells & Apraxia: Rory’s Journal

on Jun 19, 2018

So as I mentioned in my last post (you can learn more about stem cell therapy and Rory’s treatment here) my plan is to journal here once a day to note any potential gains we can attribute to Rory’s stem cell therapy through each of the 65 replication cycles.  Note that there is a decent chance that NONE of these gains are the least bit related to her stem cell treatment and very well may have happened all on their own.  But I want to have a record of everything so at the end of the replication cycle I can go back and compare from start to finish how much she has hopefully changed, fingers crossed.  If you are curious to follow along on our journey, bookmark this post and check back every now and then.     Cycle 1: Saturday, June 16th Today Rory wasn’t feeling great, not sure if it was related to the stem cell treatment or the enormous quantity of germs she...

Believe in Miracles: Stem Cell Therapy & Apraxia

on Jun 19, 2018

I debated whether to write this post, and as I type it now I’m still debating whether or not to publish it because outside of my circle of parents with special needs kiddos, I just don’t know how people will react. I mean, I know I’ve already stepped out of mainstream medicine and into the biomedical world with Rory’s care. Most people who don’t live in that world every day like I do most likely think I’m at least a little bit nuts for at least one of my beliefs about how we are trying to heal Rory. It’s ok, I get it.  I used to think a lot of this stuff was kind of nuts, too. But Rory’s latest intervention steps over the line from natural supports like fish oil, fiber and olive oil and into a very futuristic, almost science fiction, even magical intervention.  Our big trip last Thursday and Friday?  Was to take Rory to get HUCT, human...

Flying With Special Needs: The Rumble at 40,000 Feet

on Jun 16, 2018

Sometimes the worst experiences in the moment become some of my favorite memories, because they make the best stories.  Like Rory’s meltdown on Small World at Disney World and then subsequent meltdown on Living With the Land (another boat ride) at Epcot, on which I started singing the Small World song.  Both rides were AWFUL when they were happening, but looking back I can laugh and be proud of myself for surviving.  Because let me tell you, having a special needs kid is HARD.  Having three typical kids as well, I can say that our Rory is most definitely different in how we can deal with her.  When she is having a meltdown, or spiraling as we call it, there is literally nothing we can do but ride it out.  And if you have a special needs kiddo as well, you likely know what I mean.  There is no bribery, no rationalizing, no yelling or spanking or time out or disciplining that is...

Medium-Term Goals

on Jun 6, 2018

I met with a very cool speech therapist today who (among many other things, and in between me vomiting information at her as I am prone to do) asked me what our long-term goals are for Rory.  It kind of took me aback, because of course our long-term aspirational goals for Rory are for her to catch up to her peers with speech, mainstream in school and go on to live a perfectly normal life.  As I’ve been thinking about it though, I’ve come up with some more medium-term goals that I think are more attainable and I wanted to share them here: 1. I want Rory to become more of a “complete” person.  Right now she is very centered on what she wants or doesn’t want, and being happy or mad because she has or doesn’t have whatever the current desire is.  She doesn’t really care about anyone else but herself, which in some ways is typical for a young child,...

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...