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 <very loooong> daily journal where I tracked her gains for two months after the stem cells. And then read on for how she has done.
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 new sounds…for years it was just buh, muh, puh, duh…now she’s added additional vowels like ahhhh, aaaah, eeee, and many combinations of other sounds too. She can say things like potty and talker, differentiate between Minnie, monkey and Mickey, and most importantly she will actually TRY in speech therapy. Don’t get me wrong, she’s still not cooperative by any means, but she will actually make sounds and follow directions <sometimes> now, and that is new. But the biggest communication gain has been with her talker, which she got right before we left for our trip and she used sporadically but hadn’t really taken off yet. Once we got back and switched her from Proloquo2Go to LAMP and her speech therapist started working with her on it, her ability to communicate has increased exponentially! She can tell us what she wants to eat, watch, play with. She can identify colors, label soooo many different things when we are looking at books or pictures, and is learning how to have basic conversations (hello, how are you doing, etc.), how to use verbs and prepositions and how to put together complete thoughts (e.g. pull me in wagon Nicole). I still can’t ask her things like what she did at school today and get an actual response from her, but I feel like we are getting close to that point now. Before we left, I wondered if she would ever really be able to communicate with people if she didn’t learn to speak. Now I don’t fear that. Even if she doesn’t speak, she will be able to communicate. That is the biggest and most important gain we have gotten.
If I ask what her name is, she can tell me (with her talker) Rory. If I ask her how old she is, she can tell me 4. If I ask who her brothers are she can tell me Carter, Collin and Owen (verbally they are still all Bubba, but I LOVE that they have names on her talker now!), and she can identify Mama, Dada, CeeCee, Grampy, her teachers, her therapists, her friends, her neighbors, characters and more. Also, she can ask for hugs and tell me “I love you” now. Huge.
In this picture I had just taken a huge fall in the street and hurt my knee pretty badly (Note that I was carrying Rory and managed to keep HER completely safe! Hooray for ninja mom skills!). When we got home, I got this from her on the talker and despite my knee hurting like crazy, I felt much better!
Rory’s gut issues have always been and will likely continue to be very complicated, frustrating and a two-steps-forward-two-steps-back cha cha that makes me crazy. After years of unformed stools, we finally saw some success when we added Rifaximin from the Nemechek Protocol, but it didn’t stick and soon we were back to the same awful poop again. After stem cells, we finally started seeing consistently formed stools…MOST days. We ranked them from 1-Awful to 3-Formed every day and just when I would finally start to feel like it was all better, we would get another setback. I think many of these setbacks have been from the foods that she truly has issues with, like gluten, soy and dairy, versus foods her leaky gut was just causing her to react to (zillions), but I’m not really certain. After eating more gluten than she has since last December on her brother’s birthday (she had a So Delicious ice cream sandwich that despite both me and Glenn reading the label multiple times, we both managed to miss the WHEAT in it, face palm) 10 days ago, her poop has just been awful. I think, keyword think, that her gut is still in much better shape than it was when we started, but I’m also not ready to call it done.
Rory has sensory processing disorder, which is responsible for a lot of the things that made life difficult and continue to make life difficult. And while it’s still torture to brush her teeth and cut her fingernails (though very slightly less awful), she has come a long way in what she will wear. She’s still super picky and often (like right now) runs around in just her undies, she will now wear things like cute dresses that she wouldn’t even try on before. She hasn’t even fussed about wearing her leotard and ballet shoes every week to dance class (we did work on that a LOT in occupational therapy before stem cells even came into the picture, but I feel like this is a new level) which is exciting. And while she doesn’t like it, she’s tolerating letting her speech therapist touch her face to do PROMPT speech therapy with her. Baby steps here, and honestly I feel like sensory was better in the first few weeks after SCT and a lot of bad habits are sneaking back in again lately, but overall, she is slightly less frustrating than she used to be and the world is slightly less frustrating to her than it used to be.
Before stem cells, nearly every day was a bad day, measured on how many times I felt completely exasperated and overwhelmed by life by the end of the day. Directly after stem cells, Rory’s behavior improved dramatically. She was still difficult but I was able to enjoy her much more and life actually felt manageable, like a weight had been lifted from my chest, and we had a solid three weeks of good days with only a few bad days in the first two months. I should also add that she started ABA therapy 7 hours a week when we got back from our SCT, so I think that has been helping with some of the behavior issues too, but they really don’t work on behavior much there (she’s in ABA-VB so a lot of it is based on encouraging verbal behavior, imitation, small group participation, etc.).
Right around the 2 month mark I feel like a lot of the bad behavior started to come back again, which I think is likely due to inflammation starting to rear its ugly head again once the stem cells stopped replicating. We had a few really rough days/weeks lately, and I felt like I was starting to lose my mind again, but looking at where we were compared to where we are now, there is definitely a positive difference and while the days that she doesn’t nap have very difficult afternoons with spikes in aggression, her behavior in the mornings including school and therapy, has been pretty darn delightful. And she is a total energy vampire too, so when I get frustrated and angry, she follows suit, but if I keep my cool, she usually does, too. I try very hard to remember this.
This past week or so has been mostly good again. We’ve added some new supplements based on testing her MAPS doctor ran prior to the SCT and I feel like they are continuing to help with the inflammation we battle every day and making life better. She has been less aggressive with Owen this week and just sweeter overall. All the time? Absolutely not. But more often than not.
When you have apraxia and global motor planning issues, potty training is often super difficult. Especially paired with gut/poop issues. We tried to potty train Rory last summer and it was awful. After weeks of working on it, we finally had to give up and put her back in pull-ups to save my sanity. But this year, she needed to be potty trained for school, so we had to work our butts off to make it happen. We had our ABA therapy company come into our house for a 3-day intensive potty training session and we have spent the past two months continuing to work on it with varying levels of success. The good news is that in a month of school (granted she is only there 9-12:15 two days a week) she has only had ONE accident, and she finally makes it out of therapy without a costume change or multiple costume changes every time. Poop is still kind of kicking our butts. Especially since the gluten incident on 9/5, her poop has been awful and I think that makes it harder for her to know when she has to go. IF she goes poopoo in the potty, it’s first thing in the morning. Otherwise, it’s in her pants. But also on the glass-half-full side of things, she often tells me potty after she goes instead of just not noticing it like she used to. So we will just keep on trying! We have wanted to give up many times, but seeing how happy school makes her, it has helped us keep our eyes on the prize. I’d say she’s mostly pee trained and mostly not poop trained, but she is exclusively in undies during the day and our accident laundry has decreased dramatically. Compared to being in diapers, that’s a win!
Gross and Fine Motor
Rory has been in occupational therapy since last September and physical therapy since February, but just like all of her therapy, progress has been slow. Since stem cells, I feel like she has finally started making progress and actually meeting some of her goals. In PT she has started jumping, is about halfway there to riding a tricycle, and finally starting to throw balls and try to catch a balloon when it’s thrown at her (previously she wouldn’t even pay attention to it). In OT, she is finally going willingly on swings and allowing her vestibular system to be challenged more. They are working on her core strength. And most importantly she is cooperating more. Her therapists have all noticed a difference recently. I didn’t tell her OT until she brought up how well Rory had been doing a few weeks after we got back and still haven’t mentioned it to a few therapists.
Overall she has been happier! She smiles more. She laughs more. She and Owen play together more…even if that means they are ganging up on me and getting into trouble together, I have to appreciate that they are more of a unit now than they used to be, and I especially love when they hop on their Minnie and zebra ride-on toys and zoom around the house faster than I thought was possible! She gets excited about things. Her grandmother CeeCee got her a Doc McStuffins doll, and the happy dance she did when she opened it was one of the sweetest things I have ever seen. We also got her some Doc McStuffins puzzles and got the same pure excitement from it. She also got very interested in the Pet Vet set at speech, so we got her one for home, AND a monkey to take care of. She can actually pretend-play with it now, which was never something she did before. Things like this are delightful!
Speaking of puzzles, her OT had always told me how good she was with puzzles, but every time I tried to do one with her she got so overwhelmed by wanting to grab the pieces that we would both get frustrated and were never able to do them (her OT would cover the parts she’d put together to stop her from taking them apart, but whenever I tried this it ended in exasperation). Now she is the puzzle QUEEN! She requests which one she wants on her talker, puts them together methodically and patiently (as I type this she is even sharing with her brother!) and then when she’s done she puts the pieces back into the ziploc bag we keep them separated in and brings it back to me. This isn’t something that would have even remotely happened in our house before stem cells and now it’s an everyday thing.
So now that we are three months out, what are my thoughts on stem cells for apraxia? I think as long as you keep your expectations realistic (e.g. they will not wake up a completely different child) like I did, it is absolutely something can help your kiddo. Rory is not completely recovered, don’t get me wrong. She still has a ridiculously long way to go with a ton of therapy, more biomed, and likely many more stem cell treatments. But I can see a glimmer of what is possible now and I am hopeful that if we all keep working our butts off for the next few years that we can get her on a much more typical life path. We are planning to do her second treatment here in Tampa sometime in the next few weeks, trying Predictive cord tissue for this round (versus flying halfway across the country to do Invitrx cord blood/CD34 for her first treatment).