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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...

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...