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 <super long and detailed> 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 to share his name here since he doesn’t advertise that he treats kids, though I am glad to share if you message me) and went over Rory’s medical history, checked her vitals and chatted about stem cells a bit. Since this is something I have spent a lot of time researching, it’s important to me that the doctors we work with are knowledgeable and able to keep up with me, and this doctor knew his stuff. He uses Predictive cord tissue exclusively and has a small cryo-freezer so he is able to buy it in bulk and store it. He mentioned that the stem cell industry is changing at such a rapid pace and he believes that exosomes may soon replace stem cell therapy, something our stem cell Facebook group has been discussing quite a bit lately. Since it is so new, he recently injected one knee with stem cells and the other knee with exosomes to compare how they work, which I thought was a very interesting experiment! I’m curious to see which one he recommends for Rory’s next treatment (because yes, it is likely that our kiddos will need multiple treatments, and we are tentatively planning for 6 total, every 3-4 months).
We told them that we wanted to see the cells being thawed just to ensure they had been stored/thawed properly–last time the clinic we visited did this as soon as we arrived, but this office didn’t thaw the cells until they had secured her IV line, which was smart because that way the cells didn’t go to waste if they couldn’t get it, but also a bit scary since that meant we had a lag time between getting the IV and having the cells injected. We mentally prepared ourselves for lots of screaming! There were two people in charge of completing the actual procedure, and while I’m not sure what their job titles were, I know that one of them is on the flight team for the local hospital, which made me feel secure if Rory had any weird reactions (as the doctor put it, if anything bad happens, he’s the guy you want around). Since my mom has a sulfite allergy, we have been nervous about the DMSO preservative in stem cells, so we gave her chewable Benadryl prior to each of her treatments as a precaution, and I made sure there was IV Benadryl also available. It’s important to note that of all of the US stem cells available, Predictive has an extremely small amount of the DMSO preservative, and actually, the cells were clear versus the Invitrx cells that were red…though she definitely had the “creamed corn” smell that is associated with the DMSO preservative (seriously one of the weirdest things ever!) after both treatments. Also of note, Predictive is a cord tissue product versus Invitrx which is a cord blood product.
But anyway, back to the experience! One person held Rory’s arm while I bear hugged her and controlled her legs and other arm, and the other person was in charge of the IV. The clinic doesn’t treat many children, so I know it was nerve wracking for them and of course Rory screamed! It took her a few minutes to get the line in, and just when they were about to switch positions, she got it. At that point, Glenn went with her to get the cells out of the cryo-freezer, and she thawed them by rubbing them between her hands. Somewhere during the few-minute thawing process, Rory calmed down, so by the time she drew them up into the syringe, she was calm and I was able to talk her through what she was doing and cheered as the stem cells went in. She got a pink band-aid, we paid, and we were done!
The actual stem cell treatment was amazingly simple, and went similarly to a blood draw. Since Rory has had a ton of blood drawn for various tests over the past year, we know that it’s not fun, but it’s also not a big deal and she recovers and forgives quickly! I know it seems that something as complex as a stem cell treatment should be more complicated, but it really truly is a simple procedure.
Afterward Rory fell right to sleep in the car and slept until we got to IKEA, because yes, every time we go over to Tampa, we end up needing something from IKEA. Glenn carried her into the store and we attempted to lie her down in the cart on a pillow we were buying (multi-tasking!) but woke up when he put her in. She happily rode around with us while we were there, sat nicely while we waited for a part at customer service, and stayed awake for the rest of the day. We went to a Halloween party at the park and she beat up on Owen a bit, and trying to supervise Rory, Owen and (sort of) Collin was enough to make me crazy! But aside from crazy mama, there is nothing crazy to note from the day of the treatment, including no crazy bad reactions, which was a huge relief!
So, with all of that being said, the second stem cell treatment is officially in the books and now we wait to see what amazingness it will bring over the next few months! No guarantees that I will write every day like I did last time, because let’s be honest, that was summertime and summertime is over! Our life is constant school and therapy drop-off and pick-ups, baseball, ballet, birthday parties and craziness. But having this record is invaluable to me and I hope to other people as well, so I will do my best!
Day 1: Tuesday, October 30th
Rory was calm and happy all day. She didn’t have any meltdowns, which was exciting. Morning poop was the first #3 (on a 1-3 scale where 1 is awful and unformed, 2 is semi-formed, 3 is formed) she has had in months, though her afternoon poop was part 1, part 2. I KNOW she snuck some gluten on Sunday, so it very well could have been from that. Will be interesting to see how it is over the next few days. She said “Frankie” for the first time today for Frankenstein. She absolutely adores our Halloween decorations and I have been trying to get her to say Frankie for a few weeks now. Overall she seemed more aware and insightful with the things she was communicating with her talker. She is in my face right now (verbally) saying “huggie, huggie, huggie” wanting to go say (with talker) “goodbye please please please” to the “ghost Frankenstein dinosaur.” And she is getting aggravated with me that I’m typing instead of taking her to say goodnight to them, so I’m out! No potty accidents all day.
Day 2: Wednesday, October 31st
Happy Halloween! This morning Rory verbally said “Hi ducks” on the way to school and “Bye Bubba” when we dropped off Collin. Combining words is new, hoping we get more. She also had a HUGE meltdown when we got home from therapy, paired with Owen having a HUGE meltdown at the same time, it was pretty epic. When Glenn got home from picking up the boys, he took Rory while I took Owen and we got them calmed down. Rory and Owen played reasonably nicely together all afternoon though, getting themselves into plenty of trouble (e.g. pulling all of the books off of their bookshelf). Rory did as well as could be expected for trick or treating. Our neighbors drove their awesome huge golf cart around while the big kids went from door to door and Rory, Owen and I just hung out on the golf cart the WHOLE TIME! So I didn’t have to fight with her about eating candy she couldn’t have. I brought some safe fruit snacks and chocolate and fed that to them the whole evening. Another interesting gain for the day…our cat Sophie has been sick, and we don’t think she is going to last much longer. Yesterday Rory was sitting next to her and said with her talker “sick sick sick worried” and pointed at Sophie. Aside from chasing the cats, she has never shown much interest in them, so that was an interesting way to express concern. I don’t think she pooped today?? No potty accidents all day. We put her in a pull-up for trick-or-treating just in case but she stayed dry the whole time. Go Rory!
Day 3: Thursday, November 1st
Big one today! When I picked Rory up from her classroom at school, her teacher came in close to talk to me. Actually I kind of assumed she had done something naughty! She said that Rory went and got the orange, green and brown markers, started scribbling on the paper and then said pumpkin! (Well, “punky” is how she says it, but it was verbal and understandable!) She produced actual artwork, labeled it, and it LOOKS LIKE A PUMPKIN! Her teachers were so excited for us and I practically lost my mind. Rory has scribbled on paper before, but never anything meaningful, so this is the WOW gain I have been hoping for. Can’t wait to see what’s next! Poop this morning was a #3 this morning. No potty accidents all day.
Day 4: Friday, November 2nd
Not a big wow kind of day. Two of Rory’s favorite friends came over, and she wasn’t terribly nice to them. Sharing has been SUPER hard lately and she just can’t handle people touching her stuff! They continue to work on it with her in ABA, so I have to assume it will come. And speaking of not being terribly nice, Rory has not been terribly nice to Owen lately. Last time we did stem cells that was something that took a few weeks to kick in, so I’m hoping maybe soon she can be a nice big sister again soon. She also had a poop accident at therapy today, but in good news, it was a #3. Also a pee accident when we got home this afternoon. She has been doing reasonably well with potty lately but there are certain times of day that someone needs to take her and make her go, and getting home from afternoon therapy is one of those times!
Day 5: Saturday, November 3rd
Started off the morning with a #3 poop. And no, I never thought I would be so fascinated with my kiddo’s bathroom habits, but the ability of stem cells to, within one day, turn her awful poop into normal poop is just astounding to me. I am very curious what that says about the root cause of her issues, since last time it improved for two months and then got bad again. What is it about stem cells that can instantly fix her issues but not fix them permanently? I need to talk to her MAPS doctor about this. We got through most of the day without anything too exciting. Before bed, she went and got the 5 Minute Snuggle Stories Disney book and was flipping through it on her own. I could hear her repeatedly saying something but didn’t understand her. I looked and she was pointing at a picture of Flower the skunk from Bambi. She was saying “stinky” over and over again, a word she actually picked up a while ago and just recently started saying again (her speech therapist Nicole also heard it yesterday). Then she pointed at her feet and said “stinky” again, since I always tell her she has stinky feet. She thought this was funny and found “feet” in her talker. I showed her where “skunk” is too and then she found it again, all the while saying “stinky.”
Day 6: Sunday, November 4th
Today is the most “verbal” I have ever seen Rory! She is really trying to talk more, and there is actual back and forth dialogue with her now where there never was before. (Not conversation, but dialogue is a step in the right direction!) She went and found her Snuggle Stories book again. Said “Minnie” then flipped through the pages with me and actually told me the story in her own way. “Minnie Daisy cupcakes” on her talker, then I showed her where “make” is and she used that too. “Afraid” on her talker when they got scared by a noise. “Night night” she said verbally, then “asleep” on her talker when they went to bed. “Sad” in a picture where they are scared with little water drops coming off their head that look like tears. And at the end they find out the scary noise was coming from “cats” she said verbally. So cool! And then she found the picture of Flower from Bambi, repeated “stinky” verbally and found “feet” and “skunk” in her talker like yesterday. She also found Mike from Monsters Inc. and said “Mike” verbally. New word today too: she got Owen’s milk cup out of the refrigerator and said “milk” and tried to say “juice” but those are three sounds she isn’t anywhere close to being able to make, but at least she is attempting it. There is so much coming out of her mouth lately, it’s exciting! Potty wise she had two poops, one in her morning diaper (#3) and one accident (#2) so boo, but she did go peepee in the potty and told me she had to go.
Day 7 – 8: Monday – Tuesday, November 5th – 6th
What a cool two days! My dear friend and her husband and two kiddos came to visit our family from Australia. They flew into LA, then took an RV across the country and finally ended up here in Florida to hang with us. The coolest part is that her son has a similar chromosome issue as Rory (same chromosome, different issue), but he is seven and doing amazingly well, and more verbal every day. So it was inspiring to see the possibilities for her future through our human crystal ball. My friend and I met on Facebook and have been talking back and forth for months, but it was lovely how easy and natural our friendship was in person. I am so grateful for the friendships I have made through Rory’s journey!
While her behavior left a bit to be desired (hello hair pulling!) it was cool to see some of the new words that kept popping out when I least expected it! We got “truck” and even “me truck” for their awesome RV that Rory just wanted to live on. I took a picture and told them to say cheese and Rory said something that sounded remarkably like cheese! I know there were a few more too, but my mind is mush and that’s all I can remember. We also went to an awesome trampoline park (seriously, so cool!) that we just happened to have entirely to ourselves, and it was awesome to see how well she negotiated it. Rory used to be terrified of unstable surfaces, but after freezing when she first set out on the trampoline floor for the first time like “what the heck is happening?!” she was an absolute champ out there. Running all over the place, laughing delightedly, easily ducking under the nets that separated the zones, jumping in the foam pit and really just being a normal kid. It let us just sit and enjoy watching and chitty chat as grownups, so it was really, really nice for a change instead of having to hover over her. No poops on Monday, but she had a pee accident at therapy, a pee accident in the car, but was convinced to go potty in the “truck” so hooray! Tuesday brought a #2 poop in her morning diaper, then another #2 poop accident and another pee accident. I think being off of her routine just really threw her for a loop with her pottying.
Tonight we were playing with the Elmo alphabet letter toy and I was asking Rory to say the letters for me and I successfully got A (which she had done before), E and I. Also B, C, D, she said Frankie for F, T, Y, Z. I love that she finally has an interest in letters!
Just remembered one more from Monday. We were driving in the car and someone cut me off. I said “f***!” loudly and Rory totally parroted me! A time-tested toddler milestone, her first swear word! Usually this would be mortifying, but I was so proud!
Day 9: Wednesday, November 7th
After playing dress-up with her friend Rosie for the past two days, Rory picked out her blue tutu skirt on her own this morning and put it on herself to wear for the day! Hooray for fun, girly outfits for my sensory-challenged girl. This morning when I was dropping Rory off at ABA therapy (something I do twice a week and she LOVES) she burst into tears, like real crocodile tears, when I said goodbye. This was something new and different. I hate to see her cry, but it is nice to know she misses me sometimes! She had a great day in ABA and has been doing really well on her programs lately, increasing her score every time she goes. I would be curious to see this data on a chart to see how stem cells are affecting her scores. She also didn’t have problem behavior at ABA today and had a pee potty success. On the way to speech I continued quizzing her on letters, and from A-K, she attempted a verbalization for all of them! Got quite a few actually right, and she TRIED for all of them. (L+ she said NO! Then a few minutes later she fell sound asleep.) She would never mimic me before, so actually cooperating for half of the alphabet was kind of amazing. At speech therapy, Nicole is bringing in a senior level PROMPT specialist to help figure out next steps for Rory, so Nicole was using some of her recommendations today and trying to do more of the face touching PROMPTS with Rory. Rory HATES having her face touched and will try to scratch Nicole when she does them. Nicole taught her “scratch no” a while back which Rory uses quite often on her talker. (I think I’ve mentioned this before, but she also will do “scratch yes” and then look at me with a smile, her first joke!) Today Rory had to tell her “scratch no” multiple times, which is her way of saying “woman, I hate this and I want to scratch your face off, but I know I shouldn’t, but I just want you to know I want to.” She also got mad and threw puzzle pieces, and Nicole told her no, she needed to say she was sorry. Rory said on her talker “no throw Nicole sorry” and she was thrilled! What a complete thought! She just tried to say “tutu” and “letters” for me. And she did have a poop accident, but it was a #3. Here’s hoping we can get back into a potty routine. If she doesn’t poop in the potty when she first wakes up, there’s almost always a poop accident. She still doesn’t seem to be able to feel when she has to go poop, sigh!
Day 10: Thursday, November 8th
Rory had a super rough morning with behavior. She can NOT handle sharing with Owen right now and has been super aggressive with him these past few days. Add to this that he reacts the same way when she touches him gently and when she pulls his hair out, so it certainly makes things interesting trying to manage the two of them and know when she’s actually being awful and when he’s just overreacting! As often happens, she was naughty, I yelled, she freaked out crying, and she had a pee accident because she loses control of her emotions and bladder at the same time. (She thankfully had already pooped in the potty, #3!, that morning!) Once she snapped out of her meltdown, she had a great day at school and then as usual, we went to Chick-fil-a to pick up lunch on our way to therapy. It’s the one fast food Rory can eat with her food allergies, and she looooves it. She was getting cranky waiting for her food as she always does, so I tried to distract her. First I was trying to get her to say “eat” since she is making the E sound so well now, and she did it. Then I thought about their tagline and said more and she approximated more. Then I said chicken and she approximated chicken! Woo hoo! Her first three-word phrase! She did it twice for me, too. On the way to therapy, I got her to repeat approximations for A-K again (once again she refused to go past K). Getting Rory to mimic me has just been SO COOL after she had refused to do it for so long. I can’t tell you how many times now she has imitated something someone says and I almost fall over from it. It’s becoming more and more usual to hear words out of her, which is a HUGE change! Glenn just took Rory to Home Depot with him and as they were walking into the store, she said “bye bye truck!” Saying hi and bye to people and things in 2-word phrases is also becoming usual.
Day 11: Friday, November 9th
Nothing too crazy to report today. Rory had a great session at ABA. She played (mini) basketball with some of the other children happily for about 10 minutes, something she has never shown interest in before at all, so that was cool. She again got her highest scores on some of her most difficult programs, verbal and oral motor imitation. Getting a child to imitate is such an important skill when you are trying to teach them speech skills and she just wouldn’t do it before. I feel like this alone is the foundation she needs to learn to talk, and now we can all build upon it. Speech session she had an “off” session. She was hungry and distracted and had no attention span. Oh well, can’t win ’em all. #3 poop in the potty in the morning. One pee accident at ABA but otherwise a good potty day.
Day 12: Saturday, November 10th
Started the day with a #3 poop in the potty. While we were eating breakfast, Owen dumped out his cup of cereal (thankfully no milk) and I said “no, no! That was naughty!” and Rory said “naughty” with a big smile and repeated it again. COOL! Had some rough behavior today, being especially antagonistic with Owen. Owen finally fell asleep in my lap and I made Rory come into my room with me where I proceeded to will her to sleep because I seriously needed a break! She never naps at home anymore, Owen either, so it was pretty much a miracle that they both napped at the same time! After her nap, she went into the holiday section on her talker and found the word “merry.” I just looked at her funny since she’s never used that word before, and she went into the friends section and found our neighbor Meridith, who has told Rory she can call her Meri since it’s easier to say. Then she pointed at her house. It was such a clever find in her talker! Tonight she grabbed her Doc/Disney coloring book and found “color” in her talker, so we got her a few crayons and she sat next to me. We went through the coloring book and she labeled all of the characters from Doc (verbally Doc and Hallie, Lambie and Stuffy on her talker), Mickey Mouse (verbally Mickie, Minnie, Duck, Daisy, Doggie and Goofy on her talker), Jake (verbally Izzy and Cubbie, Jake on her talker), and Handy Manny (ok just Manny for that one, but it was verbal!). She also snuck at least four Dunkin’ Donut Munchkins so it will be interesting to see how her body reactions to a bunch of things she’s allergic too.
Day 13: Sunday, November 11th
Started the day with a #3 poop in the potty (so far so good with the donuts). Dicey behavior with Owen this morning, but a GREAT afternoon. We went over to CeeCee and Grampy’s house to visit with our cousin Megan. Typically this would have been a hugely stressful event, but Rory did great! We were there for about 3 hours and she was so good the whole time. She was chatting up a storm, repeating words, and pushing a button on a toy to make music and dancing to it. On the way there I got her to repeat “me CeeCee house” (well, “me DeeDee how” but close enough!) twice. Getting Rory to mimic anything, let alone stringing words together, is just so amazing to me, and actually getting used to her regularly putting two words together on her own is so cool. She is so much more interactive with us and the ability to have actual back and forth dialogue with her is so different. We had a few friends stop by earlier today who hadn’t seen Rory in a few months and it was so fun for her to say Hi to them and chatter like a normal little kid (note she is not developmentally her own age yet, but she is GETTING THERE!). Rory and Owen were playing in their room last night, nicely and quietly, and it was such a relief to have them give me a break that I didn’t check on them as often as I should have….so they pulled all of the clothes out of four drawers from their dressers today and mixed them all together on the rug. So annoying! But such a normal kid thing to do.
Day 14: Monday, November 12th
Started the day with a #3 poop in the potty but the donut attack struck at OT today with a big, awful poop accident. Part of me was starting to think maybe the gluten allergy was going away, but that’s a hard no. We had a really great, agreeable morning though. Though of course as I was typing this, she was playing in her bedroom with Owen, started peeing, and came all the way out to the living room to tell me she had to go potty, peeing and putting peepee footprints all across the house, sigh! Someday we will get potty training wrapped up!
Day 15: Tuesday, November 13th
Catching up so this is a quick one. Yep, gluten is still the enemy. #1 poop in the potty this morning. No accidents for the rest of the day! Said “hungry” for the first time. When Rory gets upset now, I feel like it is a much more “normal” toddler reaction. I can see real tears and sadness out of her whereas before her meltdowns were just frustration.
Day 16: Wednesday, November 14th
No poop today, but also no accidents. Best score ever on her verbal imitation program at ABA. We had a Skype with a PROMPT certified SLP today to give our SLP Nicole some guidance on how to best proceed with Rory. Of course Rory was a total bear the whole time, but they were able to get sounds and responses from her too. She told me that she absolutely believes she will be verbal and that she’s capable of way more than she is producing right now. So that was good to hear! On the negative, Rory bit our neighbor Jack tonight at baseball (she was mad because he took one of the other kid’s iPads away from her). Usually when she does something naughty, it doesn’t help to yell at her or discipline her because she doesn’t get it. I got down in her face and talked to her, and while she refused to make eye contact with me, I told her that she hurt Jack and she needed to say sorry. I gave her her talker and she used it to say “sorry Jack sorry” on her own, so while of course I’m not happy that she NEEDED to apologize, I am happy that she actually did apologize.
Day 17: Thursday, November 15th
#3 poop on the potty this morning and no accidents. Rory had her school Thanksgiving Feast and they dressed up in native American vests (Rory wouldn’t wear her headdress and feather, but then again, neither would Collin at this age!). We got to come in and watch them do their Pow Wow song, and while Rory didn’t sing or do the hand motions, she had a HUGE smile on her face the whole time and was just loving being there. So sweet to watch! We had to do carline to pick up the boys today and since we were there early, Rory was sitting in the front seat with me. Glenn called and Rory said “Hi Dada!” and he couldn’t tell if it was Rory or Owen saying it! Today at lunch we went to Chick-fil-a and next door at the tire place there was a big inflatable blue monkey outside. We said “hi monkey” and “bye monkey” and I was trying to get her to say “blue monkey” and/or “big monkey” but no go. I just looked at her talker from therapy though and saw that she said “chick-fil-a blue blue monkey” with her talker. Cool!