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!
Day 18: Friday, November 16th
No poop today and no potty accidents, four days in a row, go Rory! Had a blood draw today and did well. New word: bandaid. Pretty decent behavior. She is really enjoying watching Frozen. She requested Elsa twice with her talker today.
Day 19: Saturday, November 17th
Two new words at baseball today: pretty when she was putting on CeeCee’s lipstick, and yucky when she and Owie kept playing by the garbage cans. She got aggressive with Owie and CeeCee at one point but said “sorry” with her talker to both of them. This is such a nice new gain! We separated Owen and Rory for a few minutes and she calmed down and was good for the rest of the game. Today she fell out of her dining room chair and the dining room chair fell on my big toe and broke it. Waaaah! Mama needs stem cells too now!
Day 20: Sunday, November 18th
#2 poop this morning in the potty and no accidents all day. New word of the day: messy. She is trying sooooo many more words these past few weeks and they are actually sticking! I am encouraging her to put more words together too. Today at lunch she actually ate her turkey, which is also a new gain as she has refused any cold meat at lunchtime for months. She asked for turkey, and actually played along with me when I was making her say/sign different combinations of me, more, turkey, please. Owen participated too, which was helpful. The two of them finished off the rest of the package of turkey, too! She did have one huge spiraling meltdown today but I just ignored her and distracted until she finally settled down. Being stuck at home with a broken foot is going to make us all go stir crazy this week! One other thing I wanted to point out is her interest in letters. Before stem cells she wasn’t able to show us that she knew colors, shapes, letters, numbers, really anything with those pre-school basics. Now she knows all of her colors well, knows most of her shapes, is starting to show signs of counting and is learning her alphabet! They are working on A-J in ABA therapy right now and she is doing great! I have never known if she would be able to participate in a mainstream classroom and am still not too sure about it, but I have much more hope that after the rest of this school year and next school year, that maybe??
Day 21: Monday, November 19th
#3 poop accident this afternoon. She told me potty afterward though, so at least she is understanding that something is happening now, whereas before she just wouldn’t even notice. Before stem cells she wasn’t anywhere close to potty trained. So progress. Doing well with pee again today so far, will see how the rest of the day goes (one accident after dinner). Glenn and I were talking about her next two rounds of stem cells today, since we will be doing one more round in December and then shooting for every 3-4 months in 2019. On the surface, it seems like the Predictive has been significantly better for Rory than the Invitrx was, since we are getting so many speech gains out of her since the treatment 3 weeks ago today. But is that because the Invitrx laid the groundwork for it? Because the supplements she’s on now have helped? Because she’s getting much more therapy? It’s obvious to me that the stem cells are working, but it’s still not quite obvious to me what our future path should be. I think we are likely to stick with Predictive again in December, but maybe try 2cc versus 1cc? Will keep thinking about it for sure!
Day 22: Tuesday, November 20th
What a great day today! We started out with our family picture session with my best friend LeShayne, and usually family pictures are drama. Actually the last ones we took Rory screamed the whole time, and during the many sessions she has participated in, she has very rarely cooperated. Today she did awesome! She wore her pretty blue ruffled dress without complaint (aside from taking it off a few times before we went outside), was sweet to Auntie LeShayne and used all of her new words to impress her, and amazingly enough we appear to have gotten some great family pictures with very little drama. Actually Owen, our 2 year old, was the most dramatic family member today! We did have an almost-poop accident afterward. Rory told me potty and froze, so we ran (well, I gimped quickly!) to the bathroom and I got her there just in time for a #3 poop. And then she had a pee accident in the therapy waiting room which has <thankfully> never happened before. She had a good session at OT, and then Rory and I went grocery shopping alone after, where she was super well behaved and sweet. But when we got home and settled down on the couch to look at the Elmo alphabet toy she brought me and say the letters (seriously, this is huge!), I realized she was toasty hot and definitely has a fever. But then I realized we are 3 weeks and 1 day post-cells, and after the first round we had, she ALSO got a fever (and threw up) at exactly 3 weeks and 1 day post-cells. So I am assuming that she is not actually sick, just having some sort of immune event as her body heals. Last time it only lasted one day, so we will see if she follows that pattern…hopefully, so we don’t have illness for Thanksgiving! We gave her the talker and she immediately told us “sick.” So we are chilling on the sofa watching a Mickey movie on Netflix and taking it easy. At dinner we didn’t want to give her anything big in case she threw up, so I got her some dry Rice Chex to munch on while we ate. During dinner I asked if she wanted some turkey and clear as day she said “no turkey!” I asked if she wanted more Chex and she approximated Chex!
Day 23: Wednesday, November 21st
Pretty low-key day today. Since Rory has a fever and cough, we cancelled ABA and speech and just stayed home. We did puzzles, watched TV, played with letters and chilled out. It was kind of nice to not have anywhere we needed to be or anything we needed to do. I got a great video of Rory this morning saying a bunch of her new words.
I was stressing a bit that she hadn’t had any other new words today and was making her dinner. She gestured to the package of raspberries on the counter. I asked if she wanted raspberries and she said clear as day “raspberries.” Glenn was in the next room and called out “did she just say raspberries?!” Couldn’t get her to repeat it, but I know it’s in there! Also party and dark. #2 poop, I think??
Day 24: Thursday, November 22nd
Rory definitely has a cold. Her fever is pretty much gone, but she is coughing a ton and her nose was a faucet today. We almost had Glenn stay home with her instead of coming to Thanksgiving, but instead we all went and she just shared her germs with everyone. She also had two awful #1 poops and we kept her in a pull-up all day since she was so unpredictable. Word of the day was Santa (“Tanta”) looking at pictures from last year. Behavior was dicey, just as it almost always is when we go over to CeeCee and Grampy’s house. She definitely had moments of good, and actually was very well behaved at the dinner table, but once again just couldn’t handle sharing with Owen.
Day 25: Friday, November 23rd
Sick Rory today. Mid-grade fever has her wanting to snuggle with and sleep on me all day. She is pretty pitiful. Last night she freaked out after she woke herself up coughing and was completely inconsolable for a long time. She finally settled but I ended up sleeping in our “nest” next to our bed with her to keep her settled. Having her sick all day was actually a really nice break for me from the constant Rory-ness, the cycle of having to cater to her every whim, protect Owen, etc. Carter and Collin hung out with Owen for most of the day while Rory and I snuggled and she slept.
Day 26: Saturday, November 24th
Rory’s fever is gone, but today it’s Owen’s turn. So far he does not have a runny nose or nasty cough like Rory (hers is awful) but definitely the fever. Rory was obviously feeling much better so she was back to beating up on Owie and scratching me all the time when she doesn’t get her way, too. I didn’t get to snuggle with him nearly as much as I got to with Rory because I had to keep up with her. I was cranky and short-tempered all day. Cabin fever is making me crazy. #1.5 poop in the potty. New word: napkin
Day 27: Sunday, November 25th
Get us out of this house!! Fevers are gone for both littles thankfully but I can tell Owen still feels rough. I am already losing my mind at 9:07am, so that’s not a good sign. Rory is relentless and cranky and mean, and so am I right now. No poop today. Behavior was pretty darn awful whenever Owen was around. He took a long nap, and while she was still frustrating, we were able to do puzzles, look at pictures, watch TV, etc. since I have limited mobility right now. If she didn’t have a little brother, Rory really wouldn’t be all that difficult to deal with in general, but trying to keep peace between them is seriously wearing on my sanity. But I digress. Being sick, Rory wasn’t making huge gains the past few days, but she seems to be getting back to her pre-sickness self, laughing more and talking more again.
Day 28: Monday, November 26th
It was so nice to get back to normal life today! Big boys went back to school, Rory went back to therapy…and poor Owie is sick. Fever, coughing, runny nose, same as Rory. He went to CeeCee’s house while I got Rory from PT/OT and took her to speech, so I got to sit in on her speech session. She’s been out of speech for 4 sessions between conferences, illnesses and holidays, so I was anxious to get her back there today, especially since she hasn’t seen Nicole since we Skyped with the PROMPT specialist. Today was the first time Rory cooperated with the PROMPTing, which was exciting! Nicole got Rory to approximate “yeah” (it’s currently dah and she’s working on the y at the beginning). Hearing Rory be able to answer questions affirmatively was HUGE, as she’s never been able to say yes, nod, or anything! I think this will be a big one for us. She also said “Doc bag” about Doc’s doctor bag in the puzzle she was doing. #3 poop on the potty this morning, the best one she’s had yet, actually (and can I add how nice it would be for poop to just happen this way normally moving forward so I can stop thinking and talking about it!). Behavior has been much better since we haven’t been cooped up in our house!
Day 30: Wednesday, November 28th
#2.5 poop in the potty this morning. I tried giving her a beef hot dog last night, which was the first time she’s had any beef since January, and so far so good. Am trying to introduce some of the foods we’ve been cutting back into her diet again so it’s not quite as restrictive. Would like to get beef, pork, eggs and maybe even some limited dairy, like cheese, back. Pretty sure gluten and soy are gone forever though! Good days in therapy. She said “reindeer” at ABA and “out” at speech, and has continued letting Nicole touch her face with no complaints, which is huge. Once we were home though, she was SO aggressive with Owen, as she has been for the past few days. She keeps trying to scratch his feet when he’s sitting on my lap and I’m not paying attention, and she bit both me and Carter yesterday. When she’s happy and getting full attention, she’s been such a pleasure, but as soon as someone has something she wants or someone else is getting attention (like her sick baby brother), it’s the end of the world. Trying to say “Alexa” but it’s coming out more like “Dedda” so she’s not responding yet, but I think she will get there soon.
Day 31: Thursday, November 29th
No poop today. Rory had a pretty rough day at school. She was “handsy” and while they said they didn’t think it was malicious, she was just trying to get their attention, she scratched several of her friends on the face today, big sigh. Incident report at pickup. Then we went to OT and PT and while I’m not sure how she did in OT, she was just out of sorts at PT. Alyssa said she just seemed tired and not feeling great, so they played with legos and took turns stacking the legos and then taking them apart, which may not sound like a huge deal, but that is pretty big for Rory. We had such a busy afternoon. Picked up bubbas from school then came home quickly to change and headed out to go see Santa! Now let me start by saying we were a hot mess when we left our house. I realized we were running late so I was in a panic trying to get everyone wearing clothes that didn’t make them look like ragamuffins, get snacks so everyone would stop being hangry, and get on the road. Our Santa pictures were 30 minutes away when there WASN’T traffic, so we were stuck in traffic all the way there and it took forever. Rory and Owen were yelling at each other for most of the trip. We were ridiculously late getting there. But somehow when we walked in the door, the magic of Christmas presided, and we had an AWESOME Santa visit! Everyone was happy, no one was scared, and while I don’t think we got the world’s best picture, I’m confident we got at least one with all four kids looking reasonably content in it. Rory used her talker with Santa, and even verbally said “hi Santa!” and told him she wanted “Doc” for Christmas. Yay! (Although I don’t think she quite understood that she was ASKING for Doc, not GETTING Doc today, whoops!) Rory and Owen hollered all the way home too, but we picked up Outback takeout on the way home since it’s Glenn’s birthday, and we had a pleasant dinner at home and the littles are dancing around to kid music on Amazon Music happily right now. New words: hat and bug.
Day 32: Friday, November 30th
Worked with Nicole on “more” for their speech session. Rory has NO lip rounding so she can’t make oh or ooh sounds that require you to move your lips into that position so Nicole is trying to shape the sound with PROMPT now that Rory is cool with her touching her face. More was always “mah” and by the end of the session it was “moh.” She was using the Minnie and Doc puzzles that Rory likes to encourage her to say “more Doc” or “more Minnie” so also putting together the two words, so double gain there! #1 poop in the potty…from the hot dog? This girl’s gut is such a roller coaster! We got some blood test results back that I had requested from our MAPS doctor: immune and viral panels, plus a few levels we were checking or re-checking. We found that her vitamin D levels went from the 30s to the 80s, which is great for her immune system. Her ferritin (iron) levels have also gone up. We’ve been supplementing both of these plus others. She also does NOT have high ammonia, which was one theory I was pursuing, but DOES have extremely low (almost non-existent) Lithium levels, so we ordered a lithium orotate supplement (not to be confused with he pharmaceutical) to try since we know several friends who have done well with that. Hoping it can help stabilize her mood a bit. Her immune panel didn’t show any huge red flags, but her IgG, IgM and IgA levels were definitely on the low end of the normal range, which makes me wonder where they were before these two rounds of stem cells. There is a theory that immune modulation is one of the biggest things affecting “our” kiddos, and my suspicion is that while Rory is NOT one of those sick-all-the-time kids (she actually went a full year in between illnesses this year) that her immune dysfunction is the root cause of her gut issues. So I will talk more with our MAPS about this but I think stem cells are the best thing we can do for her immune system right now and we will plan to recheck these levels after another round or two to see if they go up. Another interesting number was a high absolute CD19+ level, which is a white blood cell count that can be a response to a food allergy. I checked the dates and the DD Munchkin incident was 6 days before this blood was drawn, so I suspect that’s where that came from. Finally she has a 1:80 (normal is 1:10, so 8x normal) IgG number for HHV-6 which is a herpes/roseola virus. The official ruling on this is that it shows a past infection, but the current theory among the biomed world is that any IgG numbers that are higher than 5x the normal range can indicate that this can be a virus that is hanging out in the brain causing neurological issues. So she could have caught roseola but never actually “had” (pretty sure she didn’t) and the virus could have been just there all along. So that’s another thing to talk to our MAPS about and we might pursue some anti-virals to see if we can knock that number down. SO MUCH TO THINK ABOUT!
Day 33: Saturday, December 1st
We had a busy and good day today, which I really needed (the good part, it’s been dicey lately!). Back to ballet class after two weeks off. No sure if I’ve mentioned it here, but our dance school has a special needs creative movement class and it is just the most joyful 45 minutes you will ever see. There are more assistants than there are kids, so everyone gets plenty of one-on-one attention, and they just have so much FUN! Rory has decided she loves to color now, so <after Owen colored red crayon on our tan linen shades that will not come off> I got a bunch of new washable crayons and they have really been enjoying using them, which is a relatively new development. She said “black” clear as day repeatedly and then pointed at Minnie’s ears on her jammie pants and said Minnie, which I thought was really cool, showing that she understood what black means. She also is only capable of drawing vertical lines right now because developmentally she hasn’t been able to make those other pathways. We have been working with her to try and get horizontal lines and today we got some diagonal and even one horizontal line. Hoping for some circles and scribbles soon! We also had our big neighborhood holiday festival at our lake, which are always questionable to Rory because there are a lot of people, a lot of food she can’t have, and it’s just a LOT for her to manage. I left Owen at home with Dada since trying to manage the two of them in these situations is even that much more challenging, and just took the big kids and Rory, planning to only have her there for a little while. She actually did really well and stayed for way longer than I’d planned! They had a <bubble> snow machine and she was just delighted by the snow and said “Elsa” when she saw the big Frozen cutouts they had as decorations. Her friend Rowan was there (they are a few days apart) and the girls played together so happily (aside from Rory pulling Rowan’s beautiful curly hair multiple times, which I apologized to Rowan and told her to let me know if Rory was being mean!) together. They played tag even, and there was so much giggling! I could tell Rory was getting tired and had pulled Rowan’s hair again, so I started to walk her back to our house and Rowan didn’t want her to leave, so that’s always a good sign! I’ve honestly never thought Rory would be able to keep up with Rowan since she is so verbal, but today showed me that she might actually be able to have a friend who lives right down the street, which makes my mama heart happy. She hung with Dada and Owen while we finished at the party, then the big boys and I left to go to ANOTHER party in our neighborhood after that, so she spent her evening with Dada. She was in a good mood, especially considering Owen fell asleep during dinner, and eventually got her talker to play with it for a little bit, then put it down and fell asleep on Glenn’s chest. Two #1 poops today, one in her diaper in the morning and one in her undies (but to her credit, she had just gone pee in the potty and said potty again but Glenn was too slow to take her since she had just gone).
Day 34: Sunday, December 2nd
Days when we stay home are always challenging. Rory started on her new lithium orotate supplement this morning, and while I may just be hoping, I think her behavior was slightly better than usual on these kinds of days. Any time she and Owen started sniping at each other, I would separate them and have the boys play with Owie for a little while. Rory and I did a lot of coloring and puzzles, listened to a lot of music, ran around outside for a bit while I did a tiny bit of yard work, and somehow made it through another day. She said so many new words today. Hard to believe that we have gone from a new word once in a blue moon to getting multiple new words a day! Today’s words: pink, magenta (genta), my, big, feet, and I got her to say “stinky feet” together, lol. Oh, and pasta (gluten free of course)! No poop, but also no accidents today.
Day 35: Monday, December 3rd
Good day overall today. Rory and Owen beat each other up a bit, but I feel like we are starting to MAYBE turn a corner there? Today was her second day on lithium orotate and I do think she has been a bit calmer. When she gets aggravated, you’d still better watch out, but I feel like it’s more of a normal ratio of freaking out to not freaking out than usual?? TBD. New words: marker, laundry, Froakie (Pokemon character). #2 poop in the potty this morning. One pee accident in the car since we are awful at getting our timing right on our way home from speech, but she completely freaked out and pointed at the potty we keep in the car as I was driving down the highway, so at least she tried! Otherwise she let me know multiple times when she had to pee today, so that was good. Before bed she found her Spiderman dressup suit, put it almost all the way on inside out, then when I told her so, she took it off, turned it right side out, and put it back on again all on her own. Definitely more coordinated than she used to be!
Day 36: Tuesday, December 4th
Another reasonably good day. Rory thankfully didn’t scratch any friends at school today and has been mostly pleasant this afternoon. New words at school (I didn’t hear them, but music teacher told me): bells and Christmas tree. Rory is really enjoying Santa this year, and Christmas in general. She loves our Elf, Candy Cane. As I type this Rory and Owen are snuggling on the sofa together with books, giggling up a storm. I so badly want them to be the best of friends…they BOTH need and deserve that from each other. No poop. One pee accident in the car, but otherwise good.
Day 37: Wednesday, December 5th
Another reasonably good day with some not-so-good parts. Rory had a great #3 poop in the potty this morning, but then surprised me with a #1 poop accident in the car when we pulled in to ABA therapy less than an hour later. Seriously, WTF? And of course I had limited resources to clean her up, so that was a fun way to start the day! She had a great day at ABA though. They do “programs” in between playing and having a good time, and they record her scores, so it’s very data driven and it’s been fun to watch how much she has improved since starting. Today was the first day that she had all good scores on everything she did! She is in ABA-VB (verbal behavior), so it’s all focused on encouraging the behavior needed for speech, plus getting her ready for school. We waited a long time to start her in ABA therapy because we’d been warned that it was horrible for kids with apraxia, but it has really been SO good for her and she loves it. Speech therapy was next, and that wasn’t great since she was tired and cranky, but she did say “candy cane no” when she didn’t want to do a candy cane craft, and she is trying to say “Rory” now, which is fun! She also was starting to get “in” which they were working on a lot with PROMPT today. And she was letting Nicole touch her face, too, so that’s always good. We went to CeeCee and Grampy’s house after therapy to see their Christmas tree and she was in such a good mood. She gave hugs and kisses to their Santa, Mrs. Santa and Snowman decorations outside, and LOVED the singing and dancing snowmen toys inside. She kept pushing the buttons to make them sing and jumping, dancing and giggling with them, it was super cute! She requested “monkey puzzle” on her talker and we didn’t know what she was talking about but then she came out with a Curious George puzzle. It’s been a bit dicey since we got home. We were trying to get our house cleaned up so we can finally decorate for Christmas, and I’m sure you can imagine how fun that is with four kids! Rory hasn’t been terribly nice to Owen this evening, but they are having more and more moments when they are getting along. We are working on the concept of trading instead of snatching things, so if she wants something Owen has, she has to tell him “trade” with her talker and bring him something he actually wants to trade for, and if he agrees, she can trade him. She even said “thank you” today!
Day 38: Thursday, December 6th
We went to CeeCee’s house to drop Owen off this morning and she was again so happy to go over there, excited to give Santa kisses, and said “Chilly” for the snowman outside, which is the name of the snowman on Doc McStuffins. I forgot to give Rory her new lithium supplement this morning and she was handsy at school. Not sure if this is connected, but I will make sure to give it to her every morning from here on out! She did well in OT and PT today. Miss Tammie said she was highly motivated by Dominic the Christmas Donkey so we will have to check this out. We sat through two carlines to pick up the boys today, and Rory discovered that if she screeches loudly, it makes Owen upset. When he reacts, she does it again until she is screeching and he is screaming, over and over. FUN! I finally cranked the music up SUPER loud, and thankfully Handclap and Feel It Still, her two favorite songs, came on back to back on the radio, so it broke the headache cycle. Rory’s Christmas program was at school tonight. For the past two years she had a teacher stand with her on stage, and this year she was up there by herself! She shook her tambourine like she does in dance class, and while she didn’t sing or do any of the motions, we were so proud of her for being up there and even sitting with her class through the rest of the program. I am so hopeful that this time next year she will be singing! She fell asleep on the way home but woke up for dinner. I gave her turkey, and after she gobbled it up, we got her to say “more turkey” followed by “please”!!! Such a big one! And “bad” too. Which was her 100th word, woooo hoooo!!!
Day 39: Friday, December 7th
Poop accident in her diaper this morning while she was still sleeping, which never happens, and another one this afternoon in her undies, both borderline #1/#2. Poop has NOT been great lately, so I am wondering if we have regressed there again or if it will get better. This morning was otherwise good until we were driving to ABA, when Rory started doing her whistle screech again, which made Owen cry, which made her screech, and so on. I tried asking her nicely to stop, I tried turning the music up super loud again (that just made Owen cry more), I tried yelling, nothing worked except actually getting to ABA and getting out of the car. She had a good day at ABA aside from a 5 minute 30 second meltdown over essentially nothing. Speech was ok, and she said a couple of new words I can’t remember. She kept telling Nicole “trade” on her talker which Nicole pointed out to me since it was new and pretty random (share, too) so it was interesting that she remembered that. Today she tried to snatch something from Owen and I told her she needed to trade. I told her to get her talker, but instead she went and got another toy, then came out and verbally said “trade” and gave him the toy, then I told her to say thank you and she said “thank you” clear as day! Glenn and I were both wide-eyed with that exchange! The evening has gone pretty well. We did some puzzles and she is playing Monkey Preschool Fix-It while I type this. New words: yellow and smack.
Day 40: Saturday, December 8th
Poop accident in her diaper this morning again, #1, totally back to the same poop she used to have every day. The gut roller coaster is so frustrating! Had ballet this morning, which is always wonderful. They have a pig ballerina in their window display and Rory walked up and said “hi pig!” like it was no big deal. She also told me she wanted “monkey” which means she wants to play Monkey Preschool Lunchbox on my phone. I made her say “play monkey” and then even “play monkey please.” Woo hoo! We also went to Publix (grocery store) and as we were getting out of our car, she said “bye froggy potty” because yes, we keep one of those little plastic potties in our car for emergencies. When we got back in the car, with Collin’s encouragement, she said “stinky froggy potty.” Ha! Had a rough afternoon though. Wanted to decorate our house for Christmas and Glenn got out all of the decorations for me before he went to his office to work. While I was trying to sort out where to start, Rory bit Owen on the back and I had a complete mommy meltdown! Said obviously I can’t put our tree up because I have to pay attention to Rory and Owen every second of the day, put everything back out in the garage (not nicely) and said I guess we just won’t have Christmas. I totally made Carter and Collin cry. Not my proudest moment at all. I finally cooled down and went in to apologize to them. I had a big old cry-fest after that. Rory wanted to do 5 million puzzles again so I sat on the living room floor with her doing the same puzzles over and over and crying for a while. I am so grateful for all of the gains we have seen, but this is all still SO HARD. I just want to be a “normal” family that can do things like put up our Christmas tree, or go to our city’s Christmas parade and festival (which we thought about but didn’t want to try) without the drama. I want my child to listen and understand when she is doing something wrong. I usually hold it together pretty well and don’t dwell on the negative, but this was not that day for me, and I think I just needed to cry. I was still snipey and snarky after I finally calmed myself down, so Glenn stopped working and sent me to go have a bubble bath and fix my attitude, which I really needed. We managed to turn our evening around after that. While I was having my break Glenn got Owen down for a nap. Down one little, we decorated our tree, which was still pretty dicey because Rory wanted to touch everything, climb on the step stool, etc., but we got it done. Afterward we enjoyed the tree, the decorations and especially the Owen-sized Santa who is hanging out inside our house. We played in the littles’ room, and Rory was enjoying the pretend play with her pet vet, and playing in the play kitchen. We kinda sorta managed to have our first tea party, even if Rory kept taking my tea cup away from me! The kids played a lot after dinner too, which is always nice to watch. Glenn took Collin and Owen to get takeout so I could sit with Rory and give her my full attention. We broke into the big box of floor puzzles I’ve had stashed in the closet and did a few of those. Overall observations: she is getting better at getting clothes on and off, and even put her shoes on herself twice yesterday, just needing a little help getting the back of one heel on. She is less interested in watching TV and more interested in listening to music. Her favorite songs are Handclap and Feel it Still, which we listen to on Amazon Music a lot. She is really trying hard to say Alexa! She will request “music clap” on her talker many times a day and dances every time I put it on. New words: pig and play. As I type this she has been curled up in my lap looking at pictures. Owen is still sleeping so everything will start all over again soon, deep breath!
Day 41: Sunday, December 9th
Poop accident again today, #1, but she told me potty and then finished in the potty, #2, after I got her cleaned up, so that was good. She’s been doing great with pee the past few days, no accidents and she either tells me when she has to go or goes when I ask her to try. She’s also woken up dry a few times, which is progress. I think if we could just get her poop back on track again that potty training would be less of a problem, as I have definitely seen a change in her attitude toward it. We had a great day today, a million times better than yesterday. It was raining, so Rory, Owen and I played together all day. Did a million puzzles, colored, watched movies. Rory was mostly nice to Owen and just generally sweet, despite the fact that neither of them had naps, which usually makes for a really rough evening. New words: bike (she was insistent that she wanted to go ride her tricycle in the rain/wet but had to settle for her Minnie ride-on toy), wheeee! with both me and Glenn, and Wall-E. We are up to 109 words now which is just amazing to me!
Day 42: Monday, December 10th
#1 poop in the potty this morning. One pee accident when she got mad at home, but we finally broke the Monday-after-speech-pee-accident streak. In the 4ish months since she’s been potty trained, she’s NEVER gone potty at her speech therapy office, and today I finally got her to go before we left. Good sessions all around today in OT, PT and Speech. Mostly good behavior and generally happy Rory. New words: purple, sleigh, diaper.
Day 43: Tuesday, December 11th
No poop today. One pee accident after she woke up from her nap, and she actually had a quasi-accident at OT, but it was because she got herself onto the potty and just didn’t get her pants all the way down when she got herself up there, so I will TOTALLY take that kind of accident because it means she is trying to be independent which is great! Rory had kind of a testy day today. She was more irritable than usual with me and was handsy at school, but seems to have had a good session at OT. She fell asleep when we picked the boys up at 3:15 and slept until like 7pm, so I think she was just exhausted, or fighting something off, or growing. She has been very sweet since we woke up, and while she will likely be up until god knows when tonight, it was nice to have some quiet time. Rory requires SO much of my direct attention when she is home with us that just being able to spend time with the other kids and/or working, which I did both of today is so relaxing sometimes, even if Carter did fight me tooth and nail on practicing the word list for his upcoming school spelling bee and made me want to poke my eyeballs out a bit! I made Rory a new Gemiini video today to work on some of the sounds her SLP Nicole is targeting (out, in, on and bat) and realized they added a “test” function to their videos, so I could test her receptively on the things we’ve been working on. She did awesome on the tests for shapes, numbers, colors and fruits, which was exciting! I knew she’d been doing well with shapes and colors in ABA but it was good to see it in action here at home. Plus she tried to verbally say so many things while we were working on this. I didn’t write them all down, but several numbers, colors and fruits. Go Rory!
Day 44: Wednesday, December 12th
Really awful #1 poop in the potty this morning. No pee accidents. Rory had a great day at ABA. They started new programs for drawing lines, circles, scribbles (right now she can only draw a vertical line), and for letter sounds. She is learning so much there and we are trying to figure out how she can get that one-on-one learning support in school since that’s obviously how she learns well. Behavior-wise, she was partially fine and partially driving me crazy! The new whistle screech was back again today and she just seemed like her body was on fire with inflammation. I’m thinking about starting the fish oil back up again to see if that will help. This happened last SCT too, where her poop and behavior both got bad again, though I’m pretty sure it was around the two-month mark. She requires SO much of my energy and attention lately, it’s just exhausting. Trying to do anything else, like cooking dinner, doing any shred of work, watching a webinar tonight, and she’s either beating up on Owen or making the world’s hugest mess. She literally dumped out SEVEN puzzles into a huge pile tonight when I wasn’t paying full attention to her and nearly made my head explode. New words: pea and why. As I was saying “why did you do this?? whyyyyyy?” she was parroting back “why, why why.” Bah!
Day 45: Thursday, December 13th
No poop, and two pee accidents: one when she got really mad in the car after school and one when she and Owen were running around playing. That second type of accident doesn’t happen very often lately. Great story from pre-school today…one that most parents would be slightly mortified by, but I thought it was awesome! Rory has been “handsy” lately, and this morning out of no where she randomly hit one of her friends. Her teachers told her no, gentle hands, etc., but this time they also told her she was going to go to the director’s office. Her sweet teacher took her across the hall, and Rory was obviously distraught and crying about it. Her teacher didn’t want to leave her there because she felt awful for making Rory cry, but the director (who for the record is one of Rory’s favorite people) and one of the other staff members (who Rory also loves) told her it was fine, and to go back to class. They were stern with Rory and talked to her about having gentle hands, all the while trying not to giggle because Rory immediately said with her talker “Mrs. Hudson. Yes.” because she wanted to go back to class. She was there for only a few minutes before they brought her back to class, but I love that it seemed to finally sink in that if she can’t be nice there are consequences, and that she was able to communicate that she wanted to go back to her classroom. So it was Rory’s first (and likely not last) visit to the “principal’s office!” She was good for the rest of the day. She was also saying colors to Mrs. Parent on the circle-time rug. I think she verbally said red and blue. Screeching continued in the car (OMG most annoying sound EVER) but we had a mostly pleasant evening. New words: blue, reindeer, and match.
Day 46: Friday, December 14th
#1 poop in the potty in the morning. Behavior was good until after ABA therapy (her regular therapist Rachel was not there, but she had a great session with Jen despite the interruption in routine) when she woke Owen up getting back into the car and then proceeded to do her whistle screech until we were halfway to speech. Owen was HYSTERICAL crying (because it’s such an awful noise and it hurts!) so they were just feeding off of each other. It’s probably one of the angriest mommy moments I have had, knowing that there is nothing I can do to stop her when she is literally hurting me and Owen with her actions. I had a splitting headache for the rest of the day. Good speech session, where she verbally said: deal, want, please, I blow, and sorry. Super rainy day so we delayed my birthday celebration until tomorrow and just had a rough afternoon and evening at home.
Day 47: Saturday, December 15th
HAPPY 6 MONTH STEM-AVERSARY! No poop today and no pee accidents. Today was SO much better than yesterday. And the weekends are usually pretty dreadful since we are home all day without therapy to break the day up, so a good Saturday is a rarity. We had ballet in the morning and while we still haven’t seen any huge breakthroughs here, I feel like she tried a bit harder today. She tried to jump in the hula hoops, she’s a kicking master (not really, but definitely her best skill) and with MY help, I got her to show off her somersault skills (she refused to do it with Bailey or Miss Rose). Those are definitely a new skill and while she still doesn’t love them, I can tell that she is proud of herself for doing them. I LOVE OUR DANCE HOME! It is consistently one of our best times of the week, every single week. The kids played together after dance, as nicely as they have in quite a while. There were definitely a few not-nice moments and some time-outs in there, but Rory is finally able to verbally say “sorry” when she is not nice to someone, which is huge. She does NOT like to say it, but what kid does at this age? My parents came over for Outback takeout and cheesecake for birthday cake (Rory got an allergy-free cupcake) and we actually managed to have a moderately pleasant evening. Took Rory to bed early since she didn’t nap today and she was not interested in lying down to go to sleep. I finally told her I was going to sleep, rolled over, and ignored her, and sure enough, she was out a few minutes later. New word: yay! I blew out the candle on my cheesecake and everyone said yay, and Rory piped in with yay multiple times!! YAY!
Day 48: Sunday, December 16th
Rory’s poop has been baffling me lately, since it’s been soooo bad lately. I had isolated cashews as something we have been lax on with her diet lately (they were not tested on her allergy test, but she does have issues with peanuts), which were in the Larabars she had started eating for breakfast and loooooves, so I cut them a few days ago (sorry, Rory!). This morning she had formed poop again, woo hoo! Not quite perfect, but let’s call it a 2.5. Will of course continue to monitor this but I was so glad to see some improvement here. Another pretty decent day with behavior with only moments of frustration. Rory and Owen went to CeeCee and Grampy’s house while I took the big boys to a birthday party, and they actually survived without looking like they’d been through a war when I picked the kiddos up, so that’s an improvement. My mom described Rory’s behavior as “Good! Well, relatively.” Rory has been sitting in CeeCee’s lap and snuggling with her a lot lately, which is a new development. In the evening, we went out searching for Santa who was driving around our area on the fire truck and despite it being evening and not having a nap, Rory was happy and excited, calling “Santa!!” and getting really excited when we finally found him. New word: hey
Day 49: Monday, December 17th
#2.5 poop in the potty this morning. Distracted session at OT but really good speech session. Nicole was working on her 6 month assessment and she was doing really well on the speech part of the test, and has met all of her initial goals, so Nicole is planning out what her next level will be. Having never met speech goals in over two years of speech therapy, this is HUGE!! GO RORY! The combo of Nicole (our amazing SLP) and her combo of PROMPT and AAC, plus stem cells, has been sooooo good for her. So far so good with behavior. She and Owen have played nicer together these past few days than they had in weeks. I can’t help but see the correlation between bad poop and bad behavior. New words: bow, body, buy. And she said all kinds of stuff in the assessment today that could add quite a bit to her list, which is currently sitting at 123 words that I have heard her say myself. Tonight Rory went and got her own Pullup, took off her clothes and put it on, then went and found Elf on the Shelf jammies in her drawer and put them on herself, AND went a changed into a new top! She and Owen were crawling around together pretending to be doggies, saying “doggie.” It was so cute!! And another new word: Bobo, which is one of Owen’s nicknames. If this sticks, he will finally have his own name!
Day 50: Tuesday, December 18th
#1.5 poop in the potty, no pee accidents. Great day at school seeing Santa! She was so excited to see him, said “hi Santa” and not at all afraid to sit in his lap. In fact, she climbed back up into his lap when it was time for their class picture with him! Rory and Owen went to CeeCee and Grampy’s house while we were attending something with the big boys, and here is CeeCee’s report: “You know the little green plastic horn? It takes a good breath to make a note. RORY DID IT TONIGHT! (Owie did it first which really motivated her.) I remember when she couldn’t blow out the candle on her 3rd birthday. Also, she was good with Owie and tried to trade when she wanted what he had. No fights, hits or scratches. She picked up a present and was going to open it. I told her it was Carter’s and to put it back. She did!!!! And left the presents alone. No pee, ate a little bit of lemon larabar (because Owie had a yellow larabar!) and then asked for pink larabar (ate it all). She was a very good girlso just wanted to let you know.” One of the best gains from this round of stem cells is watching Rory’s relationship with CeeCee blossom. She sits in her lap, holds her hand, asks for her all the time, and they are finally getting to be good pals!
Day 51: Wednesday, December 19th
#1 poop in the potty, no pee accidents. Today proved to me even more that bad poop = inflammation = bad behavior. Rory had good days in therapy thankfully. She keeps growing and improving in ABA, and since Nicole was out sick today, she worked with the other speech therapist who hadn’t seen Rory in a long time, and she remarked on how much more Rory is talking now, and then when she asked her to say something she would always try. HUGE! After therapy however, Rory proceeded to do her whistle screech halfway home. She’s been giving me awful headaches so often lately! She was also just all over the place, making messes, unfocused. No new words the past two days either.
Day 52: Thursday, December 20th
Awful #1 poop in the potty, no pee accidents. Good day at school with a fake snowball fight that her teachers told me she was giggling like crazy for. Reasonably ok behavior at home comparatively. No new words.
Day 53: Friday, December 21st
Awful #1 poop in the potty, no pee accidents. I just checked and her last accident was 12/13, so it’s been over a week! Good day at ABA, and good day at speech. Behavior was reasonably good. New words: now, Owe (for Owen), snotty and bubbles.
Day 54: Saturday, December 22nd
Awful #1 poop in the potty, no pee accidents. I finally feel like we are mostly there on potty training now. She definitely still needs help with a lot of the mechanics, but she finally seems to be able to understand when she has to pee and can communicate when she needs to go. Also a pretty decent behavior day, especially considering how bad our Saturdays usually get. Great morning at ballet! She is finally getting the concept of pointing her toes, and today she starting twirling, which was so cute! We spent a lot of time outside today, which is one of my new goals because I feel like we are just stuck inside all the time. Collin helped watch Owen while Carter helped watch Rory (and took her over to see our neighbor’s Santa inflatable which is uninflated “Santa night night”). I was able to get a planter around our tree weeded, and it was nice for them to be playing without me having to hover over them like I am prone to do. We also spent some time in the driveway riding bikes. Owen learned how to ride the toddler scooter, and Rory was doing pretty well on the tricycle. I got a rope and helped pull her like her PT does in therapy and she can get full rotations with that support. Of course she would rather just use her feet to propel herself like a Flintstone! She and Owen were playing doggies and bears, and Rory went into her room and first came out wearing her Princess Anna dressup dress, then went back in and changed into her Elsa dress! She also stole the present she brought home from school for me and Glenn, took it into her room, and opened it, stinker! Very cute ornament, though. 🙂 New words: Wheezy (our favorite duck’s name, plus she said “bye Wheezy duck!”), Sully (from Monsters Inc.), bed, moo, pee, and she was roaring like a dinosaur and tiger instead of making the usual guttural growling sound she used to make.
Day 55: Sunday, December 23rd
#1 poop accident this morning, but I think she may have tried to tell us she had to go and no one heard her in time. No pee accidents. Behavior was a mixed bag since we were home all day, but we survived. She fell asleep in the car on the way home from Publix with me and slept through dinner and through the night.
Day 56: Monday, December 24th
Poop accident AGAIN this afternoon, I totally jinxed myself, but at least it was a #2. Goes to show that if I can get her to poop in the potty first thing in the morning she is good, but any other poop is an accident. Still a long way to go there. Plus a SECOND #1 poop accident later in the afternoon. Rough day in general. I could just tell there was a lot of inflammation going on. We talked to her MAPS doctor the other day about starting her on CBD oil, so we started Bluebird Botanicals when it arrived in the mail today, a low dose 3 times a day (twice today). Hoping it is helpful with her gut issues.
Day 57: Tuesday, December 25th
#3 poop in the potty this morning, could the CBD oil really have helped this quickly? If so why didn’t we try this sooner?! Christmas morning was pretty difficult. Rory wanted everything Owen touched, so it took a lot of effort to maintain the peace. But in the grand scheme of Rory days, it wasn’t as bad as it could have been. I was getting myself ready in the bathroom before we went to my parents’ house, and Rory came running in, pulled down her pants and sat on her little potty (which is pretty rare already since usually she needs help and reminding to go) and then pooped a #3 poop all on her own! She hasn’t had an independently initiated poop in the potty in months, let alone a solid one. I practically threw a party right there in the bathroom! She was hard to manage again at my parents’ house during presents, and she was obviously starving (asking for food on her talker, went and sat down at the dining room table before dinner was ready and refused to leave). She was exhausting and annoying at dinner, but again, as far as Rory moods go, it wasn’t nearly as bad as it could have been. Then after dinner she and CeeCee were playing peekaboo and–this is huge because we have been working on it since she was 20 months old–she said BOO! Sounds that require lip rounding (oh, oo) have been non-existent with Rory forever, and Nicole has been working with her on them in speech. She got oh the other day and today was apparently oo day! We would say “peekaaaaa” and she would jump out from behind the Christmas tree and say “boo!” Pretty amazing stuff! Merry Christmas to us!
Day 58: Wednesday, December 26th
Weird poop in the potty this morning, half #3, half #1? So we will see what tomorrow brings. No accidents the past two days though. Rory’s friend Kayla was at ABA this morning, and when I told her she would be there, she said “Kayla.” Cool! Mostly good day at ABA. All of her program scores were above 80, mostly in the 90s. Rory and Owen were pretend-playing together today which made me so happy to see! Rory turned off the light and said night night, and they lay down on the bed with pillows and blankets and pretended to sleep. Super cute! When we were trying to decide what to have for dinner tonight (I had nothing here to cook), Rory kept suggesting Outback with her talker over and over again. She said with her talker “Outback happy Outback” which of course earned her some Outback! Definitely some aggression with Owen today. Sharing new toys is apparently even harder than sharing old toys. But they do play together relatively nicely when she’s not trying to steal things from him. New words: Kayla and fall.
Day 59: Thursday, December 27th
Happy 2 month anniversary, stem cells! Another weird poop in the potty this morning, we will call it a #2. No accidents. Had a different ABA therapist today, so it wasn’t her best day. She thankfully doesn’t behave badly with new people but she’s also not at her best. I feel like Rory has plateaued with her OT and PT. She is making very slow progress there, but I don’t know how to speed it up. I talked to her PT after session today because we have to do a re-eval for her soon and she has only met one of her goals there. Which one is better than NONE, but it’s still slow going. She has made good progress toward the other ones, but I wish it had been a better report there. So keeping it real, she still has a long way to go. Which thankfully we booked her next SCT today, going to do 2cc of Predictive to see if 2cc works significantly better than the 1cc we did last time. New words: sky, dry.
Day 60: Friday, December 28th
Hallelujah, #3 poop x 2! I heart CBD oil! One in the potty this morning and one accident in the evening, but it was seriously a poo ball, and she told us potty, just a bit too late. No pee accidents. Normal day at ABA: scores 80+ on all of her programs and about 2 minutes of crankiness. I dropped her off this morning and we went to a big playdate with some friends, so we had a bit of a Rory break, which, let’s be honest, is needed sometimes. She needs so much attention when she is with me that I have a hard time enjoying myself, so it was nice to just sit back and relax for a few hours while the three boys played. Still having a super hard time sharing with Owen, but I have noticed that her aggression with him almost always has a reason now, whereas before she would scratch him when she was getting into the car every day for no reason at all, so that’s an improvement for sure. I know these two are going to be best friends (and today Owen said “sissy is my friend!”), I just wish we could get past this hard part a little faster. No new words today.
Day 62: Sunday, December 30th
Today is Sunday but I was convinced it was Monday. Got us all up, dressed, fed, and was saying “come on, we have to go to therapy” when my husband piped in from bed with “today is Sunday.” Whoops! Thankfully he caught me before we drove all the way there to find the place empty. The days after Christmas and before New Year’s are such a blur! #2 poop, so a step back, will have to see what tomorrow brings there, but no accidents, and she went pee four times while she was at CeeCee and Grampy’s house today, which is super rare. She drank a lot of water which she very rarely does. That would be a big gain if she would willingly drink more, I know she tends to be borderline dehydrated. Report from CeeCee: “She didn’t use her talker much, not at all when we stayed out on the porch. She communicated very well without her talker. Tried many new words. She was happy the whole time too.” I have noticed her using the talker less at home, too. Of course the ultimate goal is to have her verbal and not needing it, so I’m not freaked out by this. She can usually get her point across verbally now and will get her talker f I have trouble understanding her. Today she was coloring with Collin and he asked her to find purple. She said purple and found it. He asked her to find blue, she said “boo” and found it. He asked her to find yellow, she said yellow and found it. She has been doing great with color identification, but this was next level to me to see and hear her show that she understands it. New word: shark
Day 63: Monday, December 31st
New Year’s Eve! Amazing #3 poop in the potty this morning, and woke up dry (need to start tracking this too!), and no accidents. Another tiny #3 poo ball accident at therapy this afternoon but she said potty and then went peepee in the potty, we just weren’t quite quick enough. And as I was typing this at home, she said potty and instantly got the “poop look” on her face, so we ran to the bathroom where she proceeded to poop a #3 poop in the potty! I was so freaking proud of her! Driving in the car after therapy she said “eat snack” on her own, so she most definitely got the pretzels in my purse. Then Glenn and I were hugging in the kitchen and Collin came running in and said “huggy!” and hugged us, then Rory came in and said “huggy!” and hugged us too. It was such a nice, normal family moment. One of her new favorite things to do is to “play night-night” with Owen, where they curl up on pillows and under covers together and giggle and snuggle. She insists on playing night-night with Owen, it’s so sweet! She was super aggressive with Owen earlier and tried to hit him again when I was buckling him in his car seat, then did the whistle shriek again on the way home. She seems to be less aggressive since she pooped earlier though. New words: now, see. We went outside with our neighbors while they set off a few small fireworks and Rory did great. She was happy and relatively well behaved. Really enjoyed sitting in their golf cart and was repeating all kinds of words, including another new one: Meri, our neighbor’s name.
Day 64: Tuesday, January 1st
Happy New Year! Rory got up on her own this morning which almost never happens. She was up with Carter and Collin for a long time before I woke up, which kind of freaked me out when I realized she wasn’t there, but she was up and quiet and well-behaved, so yay! The one catch is that she didn’t take herself potty, so she had a full pee pull-up and a #3 poop, but oh well, can’t win them all! We went to the playground with Rory’s best friends (who are sisters) and Carter’s best friend and his brother this morning, so it was quite a circus, but really one of the least stressful playground trips with Rory yet. She pulled her friend’s hair a few times but was generally happy and had a few cool milestones. There was a big gray “boulder-style” rock wall (not the vertical kind) that she has never been coordinated enough to even attempt. Today she climbed up it multiple times! She fell once but got right back up again. She also tried the contraption that you hold on to an angled circle that swings around, and tried climbing up the “rainbow” arched ladder. All out of her comfort zone big time and today she just seemed so much more like a normal kid! The community center was closed today, so no bathrooms, and her friend had to go potty so I got the travel potty (which Rory has never used) out of the car for her to try. Rory pointed at it, so I put it down and she totally peed in the travel potty, no big deal! We also went out to ride bikes in our driveway after lunch and not only is she getting better at her tricycle with some help, she also rode the 3-wheeled scooter on her own for the first time today! Behavior-wise she has been better than any recent days. I hope that this new path with CBD oil is the one we need to hang out on. She did just have another poop accident but with #3 poop it’s so much easier to clean up and deal with, it just feels like no big deal. She is definitely pooping WAY more than usual these past couple of days…three yesterday and two today. Weird! New word: kick. New phrase: Bobo, no kick please…Owen was splashing water with his feet and she repeated this back after each word when I said it. Definitely got the meaning too, and she thought it was funny to say to him! In general, we have noticed that she seems to be listening and following directions better, less interested in watching TV, more interested in listening to music. Starting to get some more imaginative play skills. Still a difficult child and still showing aggression toward Owen, but this past week, since starting the CBD oil, has been more good than bad for sure.
Day 65: Wednesday, January 2nd
#3 poop on the potty this morning, several round balls. Wet diaper this morning and a pee accident in the afternoon, first one she’s had for a while and she had recently gone and had no triggers, weird. Good day in therapies. Aggressive with Owie occasionally, but then when she’s not, they are sweet and best of buddies. New words: wake and baby kitty after we adopted two new kittens tonight: Kirk and Lulu!
Day 66: Thursday, January 3rd
#1 poop in the potty this morning (W.T.F.). Wet diaper this morning but no accidents. She was super excited for the baby kitties today and new words were “Kirkie” and “Lulu.” She definitely doesn’t have the whole “be gentle” thing down yet, but it’s fun to see her excited about the kittens. I hope they will be good pals. So far they don’t seem TOO freaked out! Good day in ABA, excited to play with her friend Michael in OT, and good progress in PT, but ugh, behavior this afternoon was challenging. I had a splitting headache and there was just too much screaming and bad behavior. I have so little patience when I feel awful!
Day 67: Friday, January 4th
#3 poop in the potty this morning. Wet pull-up this morning but no accidents. Very excited about the baby kitties. I am slightly scared for their safety but we are monitoring them very closely when Rory and Owen are around! She definitely likes “Kirkie” more than Lulu, which I think is funny since he is the boy. But when they are let out of the bathroom, Lulu runs into Rory’s girly room while Kirk runs into Carter and Collin’s boy room! Behavior has been pretty rough again today, and we had to separate Rory from Owen a few times to keep the peace. Good day in ABA and Speech though. New words: go and she said it before but I had never added play to the list, which she was using a lot today.
Day 68: Saturday, January 5th
No poop, dry pull-up, no accidents. Great day at ballet today. Still no major breakthroughs, but she is starting to actively participate more, like in the “hello” song, she was waving with everyone else while she usually just stands there. At one point they were doing the Wipeout song and Miss Rose was trying to get them to go from standing to squatting while waving their arms from top to bottom. She said “wave” and Rory starting waving hello, it was cute! Spent a few hours with CeeCee and appears to have been good, while completely exhausting CeeCee. Had a good evening at home. Was very happy and loves playing with her baby kitties! New words: owl
Day 69: Sunday, January 6th
#1 poop in her Pull-up this morning. I think she was too distracted with the kittens to sit on the potty long enough. Had the first really epic meltdown she has had for a while, but it had a real reason and was rooted in wanting to play with her babies. She wanted to play with the little laser light cat toy we got for the kittens but you have to push and hold the button down and she wasn’t coordinated enough to do that and move it around at the same time. I tried to help her but she didn’t want help. Tried to play with the kitty fishing pole, but that too wasn’t successful because she was already agitated. Tried to calm her down in time out but she was so worked up she got sent to her room, still screaming. Daddy took over since I was starting to lose it, and she had a big pee accident in the middle of her bed, sheesh. But finally calmed down and had a good day for the rest of the day. Today’s new word was luh for love. She will say “I luh Mommy” “I luh Daddy” “I luh Bobo” and “I luh Kirkie.” Super cute!
Day 70: Monday, January 7th
#3 poop in the potty this morning, that’s more like it! Nicole was working on her speech re-eval today and had some exciting numbers for me. Rory’s Listening Comprehension scores went from 2 years 5 months on her last eval up to 3 years 2 months. Her Expressive Language went from 1 year 8 months to 2 years 9 months. And her Expressive Vocabulary scores are currently at 2 years 6 months. She is still waaaay behind, but she aged about a year in 6 months, so that’s great! We are so happy to have found a speech therapist who really gets Rory and understands how to help her make such great progress, and grateful for the stem cells that have finally allowed her to “get it” in therapy. Went to a friend’s house after therapy and she was pretty darn good. She loved their dogs and said their names: Riley and Rowdy, and said our friend Kayleigh’s name too, plus said the clearest Rory I have heard. She was definitely difficult when we got home because I was trying to get some work done and not paying full attention, but it has been easier to get her back to baseline when she starts to get out of control. Other new words tonight as we were playing with stuffed animals: Freddie, Pow (name is Waw Paw Pow), Ho (name is Hatee Ho), Flower.
Day 71: Tuesday, January 8th
No poop this morning, wet pull-up, no accidents. My document with Rory’s list of words (we were at 160!) got deleted, so I think I will take that as a sign it’s time to stop keeping track of numbers and just acknowledge the cool things she does. We told our preschool director about the kittens today and I told Rory to tell her their names. I had to translate Kirk, but she actually understood Rory saying “Lulu.” Today Lulu jumped into the potty while Carter was going to the bathroom this morning. I had to give her a bath and said she was a silly kitty when I told Rory the story today. I was able to get her to actually help me retell the story, something she has never come close to being able to do! I said Lulu fell in the…”potty” and Mommy had to give her a…”bathy.” And I said Silly Lulu, and Rory repeated “silly Lulu!” Then we saw a lady walking three dogs, and I said look, there are three doggies, and Rory said “three doggies.” We retold both of these stories to Daddy when we got home, so she retained them! She also said “berry” at dinner when she was eating blackberries. And during bathtime tonight, I asked what her name was and she said “Rory.” Then I tried to get her to say “McKay” and she said “Kay!” Rory brought me a book at bedtime and wanted me to read it to her multiple times (she got twice!). This is the first time she’s ever done this.
Day 72: Wednesday, January 9th
#3 poop in the potty this morning, wet pull-up, no accidents. Good day at therapies. Behavior was reasonably good aside from needing to find a way to keep Rory from picking poor Kirk the kitten up, eeeek!! She absolutely adores him.
Day 75: Saturday, January 12th
Have been so busy that blogging has not happened, but for the record she had #3 poop in the potty on Thursday, 2 #3 poop accidents (one at ABA that she tried to communicate “potty poop” on her talker but didn’t get there in time, and one at speech), and #3 poop in her pull-up this morning and she had a random pee accident this morning too. I have been prompting her less so I expect more accidents, but overall she is doing great with potty. I also just tallied up her poop since we started CBD on 12/24 and she has only had two #1, two #2 poops and 17 #3’s! HUGE gain. Speaking of gains, Rory has actually started gaining weight, which most people wouldn’t be thrilled about, but she has always been so tiny. Her GI doctor said she was “malnourished” when we saw her about a year ago, and she hung out between 29 and 30 pounds forever without gaining anything. This morning she was 34 pounds! She feels more substantial and I can’t see her ribs. I hope her new gut success will help with her malabsorption issues and help her be more healthy overall. We also got Rory’s official AAC device, which is going to be a bit of a learning curve, but “pinkie” (because it has a hot pink case) is already loved, and she is currently using both of them since I have to re-add all of the vocabulary I’ve customized in her other device. Nothing amazing to report these past few days but I feel like we are settling into a good groove. If I forget her afternoon CBD I can see a difference in her behavior, so we have decided to keep the CBD for our next round of stem cells..SOON! There is contradictory advice whether to keep or stop anti-inflammatories before and after stem cells and we have stopped them for the first two rounds. This time we are hoping that since her gut inflammation is being controlled with the CBD that the stem cells can go to her brain more. All just theories at this point, so we will see.
Day 78: Tuesday, January 15th
When I don’t blog every day, they all blur together! Potty has not been great lately. Let’s see if I can work my way back…today was no poop (yet!) but a pee accident at school. Yesterday was a #3 poop accident at speech therapy, then another #2.5 poop and pee accident at home. Sunday I have no idea! We have gotten out of the poop-first-thing rhythm and need to get back to it, because this is no good. Monday we went to Publix, just me and Rory, to pick up some steaks for dinner. At the cash register, she said “hi!” to the cashier, who asked her if she wanted a sticker, she took it, and she said “bye!” It was the most normal interaction ever, and she could have been any little kid. Not a big thing, but still kind of big. I also overhauled our Gemiini expressive video to start using their x-ray videos for the sounds, and she seems to have taken to them quite well and makes the sounds along with them. She also said “pull” from the video today. I know there have been some other new words the past few days too, but I haven’t kept track. It feels like the new words have slowed down a bit. I am excited for the new stem cells on Monday! Today I could see a lot of inflammatory behavior. She was aggressive with Owen (scratched him on the face a few times, which she hasn’t done in a while), did the whistle screech a lot, and was cranky with me. I wonder if it’s because she didn’t poop today?? We were adding all of her people into her new talker (got the Accent 800 device from PRC) and her friend Randy has a little sister who we see sometimes at therapy but haven’t seen in a long time. Rory was flipping through their mom’s pictures on Facebook (I was taking pictures from my laptop to add as icons) and saw Ray and said “Ray”! I was shocked she even remembered her!
Day 80: Thursday, January 17th
Doing better with poop: #3 poop in the potty yesterday and #3 poop in the potty this morning. Once that happens, she rarely has a poop accident, so I am glad she seems to be back in that rhythm. She did have a pee accident yesterday though. The past three mornings she has woken up dry, which is awesome, especially since she fell asleep at 6pm last night. Whistle screeching has definitely been happening the past two days, so that just screams inflammation to me, and I am glad stem cells are only a few days away! She did have a “phenomenal” day at therapy today. Her throwing has improved vastly, she threw a whole basket full of different sized balls at Alyssa with accuracy, which is a very new skill. We got the Pictillo app my friend recommended, which allows us to use the app to make story books with our own words and pictures. I made one about our baby kitties and Rory said “boy” and “book” while playing with it today. Yay for new words!
Day 83: Sunday, January 20th
#3 poop in the potty on Friday and #2.5 poop in the potty on Saturday. No poop on Sunday. No accidents the past three days, wet pull-up this morning. Behavior has been slightly dicey recently but not horrible. Great day in ballet on Saturday. Rory participated more than usual and told Bailey (verbally) some of the the colors when they were walking on the rainbow pods. New words are not as plentiful, but she did say “movie” on Saturday and she is retaining what she has learned. We got some Color Wonder painting markers that she and Owen have really enjoyed. She even drew a few horizontal lines this morning, which is exciting because she’s been stuck on vertical and diagonal. We met some new friends at the playground this afternoon and Rory had a rough go of it. They have SIX kids, paired with our FOUR, so we had a ton of kids there! Rory was trying to play with their 3 year old and 6 year old girls, and she was struggling with it. She kept pulling hair and not knowing how to play with them, which is hard to watch. She also had a major meltdown when she really wanted to play on the pole that spins in a circle, but she was having trouble holding on and just got super frustrated. We had to leave at that point because I couldn’t get her calmed down, which hasn’t happened in a while. This is my last post in this journal, because tomorrow is the big day! SUPER excited for stem cells tomorrow morning!!
Day 86: Wednesday, January 23rd
Well I thought I was done with this journal, but since stem cells didn’t happen on Monday I thought I would write another few updates. The clinic we went to was unable to get an IV secured for Rory. After 45 minutes of trying and 3 blown veins, we decided to call it quits and reschedule for next Monday. It was disappointing, but thankfully we are local and it was just an inconvenience. Poop has been solid all week. I think she is finally starting to “get it” with poop in the potty. She had a couple of poop accidents on Monday, but was able to tell me right away. Tuesday she had a partial poop success. Today she actually had a poop success in the big potty at ABA, which was so exciting! She did have a pee accident in the car though, she fell asleep and was wet when she woke up. Still have more work to do, but little by little we are getting there. We’ve had a lot of whistle screeching the past few days, wish I could make that stop! Today her behavior got really bad, she was scratching Owen and just being awful. I gave her CBD oil and she has been delightful since. Definitely a connection there! New words: moon, ow, Amy
Day 87: Thursday, January 24th
No poop today. Two pee accidents: one while she was napping and one after dinner. Super rough morning and lots of screaming in the car throughout the day, but a good day at school and therapy, so at least she was good for everyone else! New words: snake, pea She is also getting good at using her talker to say things like “I want Kirk.”
Day 88: Friday, January 25th
#2 poop in the potty this morning. No accidents. Owen was sick today, so we were a little off our usual routine. Rory has been super sweet this evening though, and has been occupying herself and playing independently for about an hour now, which NEVER happens! While playing she came and told me potty and went peepee in the potty. She had a great day in ABA today. They found a “sensory sock” which is a big spandex pouch she can get inside, and she LOVED it! Just did Rory’s ATEC again and she’s at 38 now. Was at 57 before SCT and 47 after her first SCT, so I feel pretty good about that score! ATECs are definitely subjective, so Rory’s 38 might be someone else’s 80, but I definitely think that compared to where we were last June, she is that much improved. Differences include being potty trained, gaining more words, putting two words together, and having fewer and less intense behavioral issues. New words: Mai (one of the ABA therapists who does her small group), Jetty (for Jett, one of her ABA friends…I added him to her talker yesterday and she told me “Jett friend” in her talker, which was so sweet!), sock, and Dru (her BCBA at therapy, who she adores).
Day 103: Saturday, February 9th
We are finally planning to get Rory’s stem cells on Monday, after a lot of rescheduling. The good news is that after my last post where Owen got sick, our whole family (minus Carter) went down with the stomach bug from hell, and we were all miserably sick (especially ME!). So had Rory gotten her cells when she was supposed to, they would have been in her body during that awful virus, and considering how fragile stem cells are, who knows if they would have survived. So thank you, universe, for making us postpone. While she was sick, Rory was actually able to communicate to me that she needed to throw up, which was pretty amazing. And while her poop was awful while she was sick (and afterward when I very stupidly gave her IQed powder only to realize 2 days later it’s whey protein and she is intolerant to dairy) we quickly got it back on track again. Which is the first time ever that we have been able to do that quickly. I am very hopeful that maintaining her CBD oil before and after stem cells will allow more of them to go to her brain instead of being diverted to her gut as they were before. Fingers crossed! Rory is still getting new words every day. Wish I had been able to keep up with the list because it’s just been awesome lately! She now talks along with Gemiini videos, making the sounds with them, saying new words, and participating in the motions. She can say most of her colors now: pink, purple, red, blue, black, and the newest and most impressive (she says it perfectly!): yellow! Loved this story too: Rory loved watching a few of my favorite shows with me a while back: Gilmore Girls (of course), Parenthood and Grey’s Anatomy. I turned on Hulu two nights ago and was looking for something to watch. She saw the thumbnail image for Grey’s, excitedly got her talker, and said hospital. I asked her to say Grey’s Anatomy, and she actually tried to verbally say the whole darn thing. Then last night when I turned on the TV her talker was already on the charger, but she verbally said “purple!” which is how she labels her talkers these days since one is pink and one is purple. I handed her the talker and she again said hospital with a big grin. Never mind that she hadn’t actually seen the show in ages, she was able to recognize a tiny picture of Meredith Grey, associate it with a hospital, articulate that word to us, AND express what she wanted. Leaps and bounds, this little girls of ours is making.