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 cells, then if you want details, read my super long every day post, and/or if you want an overview, read her 3 month update.
Expressive Speech (!!!)
Pinch me, my baby is starting to talk!! We have been waiting for this for years now, and slowly but surely it’s finally starting to happen. She has been working with our amazing speech therapist Nicole since a few days after we got back from our first stem cells, and her combination of PROMPT speech therapy paired with building language through Rory’s AAC device (her “talker”), and the stem cells replicating in her body have been a magical combination for Rory.
Recent new words: me, hi, bye (she used to say bayh-bayh, kind of like she had a Southern accent, but now she annunciates properly), huggy, back, out, punky (pumpkin), Hallie (from Doc McStuffins), Mikey (friend from therapy), Marty (neighbor), and I’m sure there are more, especially words she has said once and wouldn’t repeat. But essentially the girl who used to get a new word every once and a while (and would usually lose another word when she got it) is now getting at least one new word per week and keeping them.
Her sounds have also increased drastically. Before she could only make bilabial sounds /m, p, b/ and now she is moving into alveolar sounds /n, t, d/ too and I don’t know what the heck KIND of sound it is, but she can also do G now. And H. She could only make the uh vowel sound before, and now she can do ahh, aah, aye, ee, iye…still can’t do oo or oh because the rounded vowel sounds are the hardest to motor plan, but she is getting there. If you ask her to say O, she will find “oh” on her talker! So she gets it, just can’t get her mouth to cooperate. Getting her to mimic ANYTHING before was nearly impossible. In speech she finally started mimicking CV sounds (like muh, ma, buh, ba) and now has moved into CVC sounds (bat, back, Mike) where she has to make a finishing sound at the end of the word. Still not doing any difficult two-syllable words (aside from throwing the ee sound on the end of a word like ducky) but again with the getting there. She has also started using some two word sentences, like “me monkey” when she was getting ready for her school’s Noah’s Ark Parade the other day!
She has met nearly all of her initial speech goals, which literally never happened before, and it is so fun to watch! Don’t get me wrong, it is still sloooooow progress compared to typical kids, but for Rory, it’s huge.
Rory continues to rock it with her talker. She is using LAMP Words for Life on an iPad right now and it is just amazing to watch! She is a little sponge soaking up new words and very quickly learns and motor plans how to get to them. She is super fast on the ones she uses frequently!
Nicole teaches her a word of the week every week and shows her how to use it with other words on her talker (for example, put: put in, put up, put down, put it back, put away, all in a little book with pictures), which I think is just wonderful. Her goal is to develop Rory’s language so when she is able to talk she isn’t stuck with “I want this, I want that” like many kids who are late speakers. While she still tends to use one or two words for convenience most of the time, if I ask her to, she will use multi-word sentences on her talker now, like: “get blue lemon muffin please mommy” for the muffins that come in a blue box or just now, “get Sophia puzzle” paired verbally with “me, me, me!” and now she and Owen are working on it together.
It’s always interesting to see what she comes up with! Nicole was asking me if she could get any allergy-friendly snacks to keep at her office so Rory could have something, and I was telling her about the chips I usually get at Sprouts. Rory brought over her talker that said “chips brussels sprouts grocery” which made me confused for a minute since she’s never even tried brussels sprouts, but then we realized she heard us talking about Sprouts and that’s how she was able to verbalize it. So cool! She can also frequently be found, since it’s Halloween time, using her talker to tell us about “skeleton car speech therapist” (the speech therapist at one of her therapy centers has a skeleton wearing sunglasses buckled in the back of her Jeep and Rory loves him!), and “Frankenstein ghost dinosaur” paired verbally with “huggy!” to tell me she wants to go outside and visit with our Halloween decorations on our front porch, something we do at least a few times a day! She also verbally says hi and bye to them when we drive past our house, super cute! Oh, and when Rory gets mad, she tends to scratch people, which doesn’t go over terribly well to say the least. Nicole taught her “scratch no” on her talker, and since then, any time she gets frustrated with Nicole, like when she tries to touch her face to use PROMPT cues, Rory will say “scratch no” with her talker like she is reminding herself not to scratch! She will also sometimes come over to me and use her talker to say “scratch no” and then “scratch yes” and look and me and smile. It’s her first joke, and she thinks it’s so funny!
We also often argue now. She will ask me to do something, like “get cookie” and I will say no, then she will use her talker to say “yes”….no, yes, etc.
Before stem cells, I would explain apraxia to people that Rory could understand everything you are telling her, she’s just not able to make her brain and mouth communicate so she can talk to you. But honestly, I didn’t really fully believe that when I said it. Because sometimes it just really didn’t feel like she was understanding us. Now that she has her talker, we know that she IS understanding us, and she knows way more than we were previously giving her credit for. It. Is. Amazing. I fully intend to write a whole talker post at some point when I have time, but again I will say here that if your child is non-verbal, pre-verbal or even moderately verbal but struggles with articulation and gets frustrated because of it, a talker is an amazing thing if it is used correctly! I talked myself out of it for a long time, but it has been hugely positive for Rory and I wish I’d gotten it for her sooner because we could have saved a lot of frustration. Any time she can’t tell me what she wants now, I tell her “go get your talker!” and off she runs to get it and of course she can tell me right away what she wants or needs.
Lest you think it’s only the stem cells that are helping, Rory has been in occupational therapy since last August, physical therapy since February, ABA therapy since right after we got back from stem cells in June, and of course speech since right when she turned two. She has had a ton of evaluations and a ton of goals in those evaluations, and I honestly don’t think she had ever met any of them. She was just such a tough case, and while occasionally she would make a little bit of progress, it was always so insignificant that her goals would just roll over at re-eval time. Since stem cells, she has met goals in ALL of her therapies!
It OT, she used to HATE unstable surfaces and it was difficult to get her on swings or anything that challenged her vestibular system. Now she loves it! She is working with two great OTs, Tammie and Amy, and they have finally been able to challenge her more and push her. Same with her PT Alyssa. She is finally jumping and starting to catch balloons and balls, and riding a tricycle with help.
While we don’t have pre-stem-cell data to compare with for ABA, it has been amazing to watch her blossom with the programs she is working on. They keep so much data there that we have been able to watch her percentages climb on everything she is working on. She’s mastered the three colors programs using her talker to identify colors. The girl would would NEVER mimic everything is now doing motor imitation and verbal imitation. It’s still hard for her and she gets kind of cranky about it, but she’s doing it! ABA-VB (verbal behavior) is focused on developing language, and I think it has definitely helped with the progress she is making with her speech.
Do I think she would be doing as well post stem cells without all of the therapy she is in? NO! Her therapists are all amazing and I completely credit them with helping Rory make progress. I believe the stem cells are making her READY to make progress. And while I’m not really sure where this fits in, I also wanted to point out that she is on other biomed supplements too, which I know I’ve mentioned before, but just want to be completely transparent that we do NOT just rely on one thing for Rory. Based on results from tests her awesome MAPS doctor performed, to correct imbalances in her body, Rory is on Liothyrinine (free T3) for thyroid issues, recently finished a round of Diflucan for yeast, Iron, CoQ10, Zinc, D3-K2, NAC, CDP Choline (for elevated sPLA2 inflammation markers), and Inulin prebiotics (we still love us some Nemechek Protocol, and Rory was very briefly back on fish oil and olive oil too before we stopped it again to prep for round 2 of stem cells, but we kept the inulin this time around since I think it is helping with her poop).
Behavior, which was one of the most drastic gains for the two months after stem cells, has been hit or miss, literally, since she does tend to hit! Rory has always been a bit aggressive, or “handsy” as her teachers have nicely put it, especially toward her little brother Owen. Lately she will have some moments where she is sweet with him, shares, hugs him, they play nicely together…and some moments when she is awful, snatching things from him, scratching him, pushing him. The norm is that they play very nicely together when they are running around the house, terrorizing our cats, wreaking havoc, climbing on things and just being crazy toddlers. When there are toys involved, that’s when it gets dicey. We are hopeful that this will get better in a few days when she gets the new stem cells.
Rory’s gut issues make. Me. Crazy. I feel like we have been so close so many times to figuring them out but we are just not there yet. After stem cells her poop was a “3” on our 1-3 scale where 1 is awful and 3 is formed for a solid few weeks at least. With good poop comes good behavior, and with bad poop comes bad behavior…it’s a generalization but it is often VERY TRUE for Rory. Honestly since we did the Diflucan for yeast on her OAT, it got pretty awful again. I feel like this is something that normally helps bad poop for a lot of kids, but it was not a hit here. And it could be completely coincidental that her poop got worse when she was on it, but it’s not something I’m anxious to try again. We also briefly tried some Bravo non-dairy yogurt drink despite my distrust of probiotics (thank you, Dr. Nemechek), but that did not improve things so we moved on. I started her back on inulin powder again, and while it’s certainly not a 100% improvement, I do think that it’s helping (she is generally a 1.5 to 2 versus the 1 she was holding at for weeks) so we are keeping it in the mix.
One thing we know for sure is that gluten is definitely a problem. Every time she sneaks gluten, she has diarrhea for at least a few days, maybe more. It’s awful! While we can’t officially test her for Celiac without doing very invasive testing (she was off gluten when we wanted to do the Celiac blood test so we could only do the genetic component which showed that she has the gene that causes a small number of Celiac cases…so we didn’t rule it out but couldn’t confirm for sure) we are just assuming that she will be off of gluten forever and hoping that a lot of the other issues she has are just temporary. We plan to do another round of food allergy blood testing before the end of the year to see how she is doing with all of the foods we have eliminated or limited for nearly a year now and keeping our fingers crossed that we can add a few back in again.
I have said this before and I will say it again: stem cells are not an instant miracle cure, but I still do believe they are a miracle. Rory didn’t instantly turn into a typical child when the stem cells entered her body for the first time, and I certainly don’t expect that this round either. What did happen and what I expect to happen again are slow, subtle gains as her body very slowly heals itself. Rory is not a drastically different child. She is still difficult in many moments of our life, but she has come so far in so many other ways.
With her first round, Rory had 1cc of Invitrx cord blood product which had a higher CD34 content with lower MSC count, and with this next round she will have 1cc of Predictive cord tissue product, which has few CD34, but higher MSC count (MSC are mesenchymal stem cells, which are largely believed to be the best for helping our kiddos). We honestly don’t know whether to expect similar gains or different gains since all children are different, but there are many kiddos within our stem cell Facebook group that have been trying Predictive and doing well with it, and that’s what the doctor in Tampa uses. With our first round we were very uneducated about stem cells and while we knew the basics of how they worked, we didn’t understand all of the different labs and their benefits and drawbacks. Now, thanks to some very smart people I associate with, I have a better understanding of exactly what she will be getting and how it has been working with other kids. We are excited to see what cord tissue can do for Rory.
Of course I am still nervous and taking deep breaths until the treatment is done and we can see it start working again. I will try to keep another post updated with gains every day for this round, too, but no promises since this time it’s not summer vacation, and our life has been SO hectic lately (school, work, baseball and so. much. therapy.) that finding time to write means I am definitely neglecting at least a few other things I should be doing instead!
So wish us luck! Round two is tomorrow morning at 10:45am!