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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!

Stem Cell Therapy & Apraxia: Rory’s 3-Month Report

on Sep 17, 2018

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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 Despite getting home at 3am from our trip, we were up bright and early for ballet because it was our first day of summer session and Rory loves...

Believe in Miracles: Stem Cell Therapy & Apraxia

on Jun 19, 2018

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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,...

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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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

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Ode to Irma

on Oct 4, 2017

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Nemechek Protocol and Apraxia

on Sep 23, 2017

The journey we’ve been on with Rory since figuring out a few months ago that she officially has apraxia has been such a learning experience including driving through a tropical storm to get a diagnosis and successfully navigating the Medicaid application process to get her CMS insurance to cover the extensive therapy she needs. Throughout these few months I have read a lot of books that have opened my eyes to apraxia, sensory processing disorder, behavior modification, and the latest, the Nemechek Protocol.  Neme-what, you might be thinking?  This was certainly new to me, too. I really do believe that there are “signs” put out there from the universe that we really need to see, so I tend to fall down rabbit holes quite frequently in the various Facebook groups I’m a part of, exploring various disorders, treatments, and especially success stories to see if they...

Tropical Storm Apraxia

on Aug 3, 2017

Our daughter Rory has apraxia.  Finally we know for sure it’s what we are dealing with, and we literally drove through Tropical Storm Emily for that confirmation.  Sometimes metaphors are ridiculously obvious and kind of cliche, but just so true you have to expand upon them, so can we just talk for a minute about how the tropical storm and apraxia are so similar? Emily came out of nowhere and took everyone by surprise, just as apraxia caught us off-guard.  Sure it’s hurricane season in Florida, so duh, you should expect it, but the storm really did organize and appear overnight unlike most named storms.  Apraxia, too, has been a possibility since last April, but since none of the therapists who’ve worked with Rory really thought it was apraxia, we didn’t think so either.  When I read The Late Talker, BAM, it hit me just like Emily walloped the coast. But also...

Starting Rory’s Apraxia Journey

on Jul 22, 2017

We have been trying to “unlock” our three-year-old daughter Rory’s speech for the past year and a half. While apraxia has been on the table as a potential diagnosis since the beginning, I never really felt like that was “it” and I hoped that even though it wasn’t likely, that she would be one of those late talkers who just woke up one day and started speaking in full sentences. You know, like Einstein. When she turned three and still had only a handful of words, we took her to the developmental pediatrician, who pulled out her copy of The Late Talker to go through the symptoms of  apraxia with us.  When we got home I checked the book out from the library and joined the Facebook group of co-writer Lisa Geng where I read article after article about her experience with her son’s apraxia.  But it was this article about the soft signs of apraxia...

Owen’s Birth Story: Part 2

on Nov 21, 2016

One of the questions I hear the most from first-time moms is “how will I know I’m in labor?” and usually it’s pretty obvious.  However, when you have been having contractions for a few days–yes, REAL ONES, not Braxton Hicks–you definitely start to question yourself.  So here we are on Monday evening and Glenn just took Collin to his t-ball practice.  As soon as they left, my contractions went from every 30-45 minutes to every 10-15 minutes to every 4-5 minutes apart and the intensity was definitely increasing.  I was chatting with my mom on Facebook and timing the contractions on my app while trying to determine if this was really “it” and had pretty much determined that I needed to take another trip in to triage to at least get checked out.  Being 0cm dilated and not effaced at all that morning was making me feel pretty ridiculous...

Owen’s Birth Story: Part 1

on Oct 30, 2016

Dear, darling Owen, my beautiful fourth child who finds his first blog mention in his birth story post.  Get used to it, kiddo.  You have joined a wild and wonderful circus of a family and as our caboose, this sort of thing is bound to happen often.  I promise that despite our being busy and scattered, we will love you just as much as we love ALL of our children, and that infinite amount of love for each of you is something you will never understand until you have children of your own. My pregnancy with you was overall delightful with a few bumps along the way. The first was morning sickness, which once again reared its ugly head and turned me into a useless lump of nausea huddling on the couch for weeks on end.  Dada completely took over as Super Dad, driving kids to and from school, feeding and bathing everyone and generally being amazing while I read about 20 books and tried not to...

Palm

on Sep 14, 2015

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Woodcrest

on Aug 2, 2015

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