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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!

Klebsiella Bacteria and Th1 Immune Dominance

on May 12, 2019

Who else has had moments when things just start clicking? When you start recurrently seeing the same things through various research tracks you have taken? I don’t know whether to get excited or cry right now! We recently got the results of Rory’s uBiome Explorer test, and while Rory’s gut is actually in pretty good shape with a lot of really positive things happening, the Klebsiella bacteria has reared its ugly head again. It showed up on her stool test as dysbiotic last June and while I can’t compare apples to apples to see if it’s higher or lower now because the tests are very different (her POOP is definitely better now than it was then), it’s definitely still there in higher quantities than the average person (0.36% compared to around 0.01% from what I have seen from friends). I have fallen down a Klebsiella rabbit hole. Turns out it can cause...

Puzzle Pieces

on May 8, 2019

I hear many parents talk about how they wouldn’t change their special needs child, and while I always look at them in awe of their patience and steadfastness, I am not that parent.  I spend hours, days, weeks and months researching, talking to other parents, obsessing over and learning everything I can about treatments…that will change Rory.  I fully believe that she can and will improve–and is proving that every day–and that just accepting her the way she is would be doing her a disservice.  Realistically I know that I am doing at least close to everything I can possibly to do help her be her best Rory.  But as a parent who also has three other children who do NOT struggle with the same things she struggles with, here’s what I would really love to do. I would love to take a shred of Carter’s brilliance…his prodigy, a few of the extra IQ points...

Stem Cells and Apraxia: Rory’s 10 Month Update

on May 4, 2019

Rory had her first stem cell therapy on June 15, 2018, so as we crossed over the 10 month mark and just did her fourth stem cell treatment on April 29, 2019, I wanted to give an overview of the gains she has experienced. If you would like to know more about our experience with stem cells, you can click on the Stem Cells category in the menu or…read our stem cell introduction here, read a  daily journal of the three months following her first stem cells here, read her three month update here, read her in-between 1 and 2 report here, read daily journal of the three-ish months following her second stem cells here, read her 7 month update here, read daily journal of the 2.5 months following her third stem cells here, and see a cool video comparison of before and after stem cells here. I also wanted to point out again that we are not doing stem cells in isolation, and so many other...

Stem Cells and Apraxia Round 4: Rory’s Journal

on May 3, 2019

It has been such a busy week that I haven’t had even a few minutes to sit down and blog about Rory’s latest stem cell therapy, sheesh!  She had her fourth round of stem cells on Monday, April 29th.  We used Stemell cord blood, the 2cc+ 30 million TNC dose.  We primarily chose this product because it has the highest CD14 content of any of the US lab products, and after watching Dr. Kurtzberg at Duke talk about how they’ve isolated CD14 as the most important component of cord blood because it is actually able to heal damaged brain cells, it was my goal to get as much of it into Rory’s body as possible and see what happens.  Note that the dose Duke gives is SIGNIFICANTLY higher than anything you can get outside of Duke, but we still got about 6.5 million CD14 cells from this round and have fingers and toes crossed that they are working hard in her brain right now....

Stem Cells and Apraxia Round 3: Rory’s Journal

on Feb 14, 2019

Time to start tracking another round of stem cells for our sweet Rory!  We did 2cc Predictive Corecyte for this round.  After trying several weeks ago and having a big fat fail getting the IV for her and then having to reschedule when our family got the dreaded norovirus on the reschedule date (and giving the virus some time to work its way out of her system), we finally got her third SCT on Monday, February 11th. They tried to get an IV one time and while they almost had the vein, it blew on us.  I had approached the doctor before we went about using IM (intra-muscular) instead of IV as a backup plan since we know plenty of friends who have done well with it, and they agreed.  So to avoid futher IV torture, Rory got an injection in her gluteus (actually two jabs since she is freakishly strong) and the stem cells are hopefully hard at work in her body.  We are expecting the gains to...

Stem Cell Therapy and Apraxia: Rory’s 7 Month Update

on Jan 12, 2019

Rory had her first stem cell therapy on June 15, 2018, so as we cross the 7 month mark and are about to do our third stem cell treatment next Monday, 1/21/19, I wanted to give an overview of the gains she has experienced. If you would like to know more about our experience with stem cells, you can read our stem cell introduction here, read a  daily journal of the three months following her first stem cells here, read her three month update here, read her in-between 1 and 2 report here and read daily journal of the three-ish months following her second stem cells here. I also wanted to point out that we are not doing stem cells in isolation, and so many other things have contributed to the progress she has made: a crap-ton of therapy, most notably PROMPT speech therapy (plus the introduction of her AAC “talker”) and ABA-VB that both started right after her first stem cell...

Before and After Stem Cells: Videos of Rory

on Nov 22, 2018

Before Stem Cells 9/26/17 Rory had been on Nemechek Protocol for a few weeks and this was the first time she would actually cooperate so I could film her. You can see how basic her approximations were. This is the best “before” I have for what her speech was like prior to stem cells.   After Stem Cells 11/21/18 Three weeks after Rory’s second stem cell therapy, she has so many new words, and look how cooperative she is!

Stem Cells and Apraxia Round 2: Rory’s Journal

on Nov 1, 2018

Stem cells have been Rory’s most successful intervention thus far.  So we were extremely excited–and a little nervous, but mostly excited–to take her for her second stem cell treatment on Monday, October 29th. If you would like to know more about our experience with stem cells, you can read our stem cell introduction here, read a  daily journal of the three months following stem cells here, read her three month update here and read her in-between 1 and 2 report here. This time we were able to stay local in Tampa, FL instead of flying across the country, which made me happy since flying with special needs is hugely stressful.  We were able to drop our big kids off at school, drop our toddler off at his grandmother CeeCee’s house and drive 30 minutes to her appointment.  She even went to therapy that morning! We met with the doctor first (and I’m not going...

Stem Cell Therapy & Apraxia: In Between Round 1 & 2

on Oct 28, 2018

We are beyond excited to take Rory for her second stem cell treatment on Monday, October 29th, and the best part of all is that we get to stay in Tampa, FL for this round instead of traveling across the country.  We will take the big kids to school, Owie over to CeeCee’s house, Rory will go to her physical therapy and occupational therapy just like normal, and then we will head across the bridge to Tampa for hopefully a quick and easy IV push of magic, and then home again to finish up the rest of our usual Monday, including picking the boys up, a Halloween party and baseball practice.  You know, the usual, then potentially life altering, then back to usual again. I wanted to capture some of the exciting gains Rory has had since my last post, honestly some of the most exciting ones we have gotten.  If you haven’t read my other posts, I recommend starting with our intro to...

Colors

on Oct 19, 2018

When we are born, everything is black and white.  Happy or sad.  Good or bad.  We quickly find red, too–the love of our parents–but the palette of a newborn is very basic and pure. As babies grow, explore and interact, more colors emerge.  The first smiles and giggles bring yellow for joy.  The outside world shines in sky blue, and the warmth of sunshine glows in orange.  First jealousy burns a vivid green.  The adoration of family is a royal purple.  The colors of infancy are primary, bright and simple. Young children gain an explosion of color with the emergence of curiosity and imagination. Instead of only red, there is a full spectrum from ballerina pink to angry crimson.  Blue ranges from the sheen of a bubble’s curve to the rich cool of the ocean. There is subtlety and shading giving a complexity to a child’s being.  It’s what gives them spark and...

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

on Sep 17, 2018

I can’t believe it’s already been 3 months since Rory’s stem cell therapy!  In some ways, actually in many ways, it feels like not much has changed, but when I stop to think about it, I can see how far Rory has come in such a short time. First, you might want to read a summary of what I initially learned about stem cell therapy and Rory’s first treatment, and click here to read through my daily journal where I tracked her gains for two months after the stem cells.  And then read on for how she has done.   Communication Expressive speech was our most-wanted gain, and while I certainly wasn’t expecting her to burst out with soliloquies, I was very hopeful that she would make some progress in this area.  And while I really didn’t notice anything much from the first few months, lately I feel like she is finally starting to make progress.  She is making...

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

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,...

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

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...