So as I mentioned in my last post (you can learn more about stem cell therapy and Rory’s treatment here) my plan is to journal here once a day to note any potential gains we can attribute to Rory’s stem cell therapy through each of the 65 replication cycles. Note that there is a decent chance that NONE of these gains are the least bit related to her stem cell treatment and very well may have happened all on their own. But I want to have a record of everything so at the end of the replication cycle I can go back and compare from start to finish how much she has hopefully changed, fingers crossed. If you are curious to follow along on our journey, bookmark this post and check back every now and then.
Cycle 1: Saturday, June 16th
Despite getting home at 3am from our trip, we were up bright and early for ballet because it was our first day of summer session and Rory loves it! Miss Bailey, her teenage helper, was not there today, so she had a bit of a hard time without her and with all of the new kiddos in her class, but I think she handled the change as well as could be expected.
Today Rory wasn’t feeling great, not sure if it was related to the stem cell treatment or the enormous quantity of germs she was exposed to on four airplanes, the zoo, playground and aquarium in the past 48 hours. She threw up (just a little bit) in the car when we went to get lunch but then was fine afterward. Then when I took the boys to a birthday party, I got a text from Glenn:
She brought me her talker. Found “I feel sick” and pointed at the couch. I asked her if she wanted towels (we always cover the sofa in towels if anyone threatens eruption), she gestured at the couch. I put the towels on the couch, went to find the basin and she followed me, got the basin and went back to the couch to lay down. She stayed super still in the fetal position, was extra pale, and got goose bumps. After about 10 mins she started acting fidgety and was happy again. Weird. Back to normal. If I ask her if she feels sick and hold the basin in front of her she makes a pretend blowing/spitting gesture into the basin.
Rory has NEVER been able to communicate to us that she feels sick or is hurt, so I consider this a huge gain! She also will repeat the weird spit bubble gesture if we ask her if she feels sick, which is a new thing…normally she will do something once and then never do it again.
Cycle 2: Sunday, June 17th
When we were eating breakfast today Rory, signed that she wanted crackers, so I gave her a few rice crackers. She grunted at me meaning that she wanted more and I said no, and modeled sign language for “more crackers please.” One after the other, I signed more and Rory signed more. I signed crackers and she signed crackers. I signed please and she signed please. She does not normally have the patience to do that, and she was also smiling the whole time, no frustration.
She also brought me her talker and said “change,” a button she has never used before and come to think of it, I don’t even know where it is. She gestured to her clothes and grabbed my hand to tug me into the bedroom with her where we went in to get dressed. She got dressed without drama and left her clothes on.
She has also generally been very happy, snuggly, and mostly sweet to her brothers.
We Facetimed with my parents (CeeCee and Grampy) to wish Grampy Happy Father’s Day, and Rory was SO chatty. She was babbling way more than normal, following commands (dance, jump, kick, point your toe), and blowing kisses which is a relatively new skill anyway but she was very animated about it. She also has started calling Grampy “Boppy” which is adorable. It started on our trip and she said it a few times on the phone.
Cycle 3: Monday, June 18th
This morning I am having a panic attack that we spent a large sum of money, went through a stressful trip, and gave our daughter an elective medical procedure for nothing. I am watching every move she makes searching for things that are new and different, and while I will say that she has been overall happier and a bit kinder, she’s not a drastically different child yet. There is still plenty of time to get the gains we are hoping for, and I am trying to stay positive, but I have a tightness in my chest that almost makes it hard to breathe. As many times as I told people that there may be a chance nothing will happen from this treatment and I wasn’t getting my hopes up, I will tell you now that they were up and still are up. I really, really, really need this to help her.
After I wrote this, Rory brought me a lift-a-flap book to look at, and actually let me look at a few pages with her. This may not seem like a big deal, but she usually tries to flip through the pages so quickly that we can’t talk about what’s on each page and we both end up so frustrated that I give up trying, but today she found animals when I asked her to, and we looked under all of the flaps on a few of the pages before she lost interest.
She also discovered the Tupperware drawer while I was cooking dinner tonight. This is a phase the Carter and Collin both went through as toddlers but Rory never did. She happily pulled everything out and put it on the counter, then put most of it away again. The whole time she was smiling, happy and focused on her task.
Cycle 4: Tuesday, June 19th
Rory started ABA-VB therapy today, which is behavior therapy with a focus on verbal development. She will be there 4 hours on Tuesdays and 3 hours on Thursdays, and we are so excited for the possibilities since we know several friends who have been to this therapy center with great results. It’s fitting that we are starting this new therapy at the beginning of Rory’s stem cell journey, and I am so hopeful that the stem cells will help open her up to making the therapy more effective. She had a great first day there and only cried once because some other kids were upset and it upset her. There were no bad behaviors from her, and while I know they didn’t push her too hard since it was the first day, I’m glad that she wasn’t a problem child!
Rory likes to eat Pear-Mango pouches (since she is intolerant to applesauce) and we use it to mix in her supplements. Today she opened the refrigerator, which she has only recently been strong enough to do (I’d actually never seen her do it before), and pointed to the pouches and made the P sound, puh-puh-puh, which she usually only uses for Peppa Pig, or pigs in general. I’ve never heard her use it for pouch!
She had a bit of a rough behavior patch this afternoon. She pushed Owen off of his zebra ride-on toy and was sent to her room in timeout. Then she came out still mad and crying and picked up my phone and threw it at me, so back into her room for timeout. When she came out she was still mad and crying, so I got her talker and modeled for her Rory feels “mad.” Do you need “help calming down”? She took the talker from me and found “bathy water time” which is what we call bathtime and one of her absolute favorite things to do. She pushed it about 20 times in a row. So I took her in to have a bath and she has been fine for the rest of the day. This was the first time she was able to communicate how to help her calm down.
When I was getting ready for dinner she asked with her talker to “color,” so I asked her to get a coloring book (she picked out one with Minnie Mouse, big surprise) and I set her up at the kitchen counter. She colored for a few minutes, then proceeded to flip through the coloring book quietly with focus on her own for about 15 minutes.
When she was done coloring she and Owen were running around together and Glenn noticed that she was galloping, which I have NEVER seen her do. I asked her to do it again and she did it again! I will ask if they have been working on this in PT.
One more! She bonked me in the head and I asked her to say sorry and give me a kiss. She actually gave me a kiss! This has never happened.
Cycle 5: Wednesday, June 20th
This morning I pulled out Rory’s Little Mermaid shirt and she said “mermaid.” I asked her to repeat it multiple times later and she did.
Rory had a speech evaluation this morning with an amazing new speech therapist who focuses on developing speech with PROMPT (which helps apraxia kids learn to motor plan the sounds with tactile cuing) and developing language with AAC (alternative and augmentative communication, aka an ipad with a speech program on it). It’s a perfect fit for Rory and other apraxia kids like her, and despite it being 35 minutes from our house, we are SO very excited to start with her! Rory has had many evaluations and generally isn’t very cooperative, but today was her best one. While she still struggled with plenty of the tasks (and seriously, reading one of those evaluation reports pretty much always will make me teary because I can see just how far behind she is), she was generally pretty cooperative and actually made attempts to say a lot of the sounds and words she was asked to make. She also had a complete giggle attack at one point and couldn’t stop giggling, which I had never heard before.
And a BIG one today…Rory had solid poop! We have struggled sooooo much with poop and gut issues and were so hopeful that stem cells would help address this. No guarantee yet, but I’m hoping this was the first of many!
Cycle 6: Thursday, June 21st
There were no “wow” gains today, but overall it was a pretty decent day.
When Rory was on Rifaximin I developed a 1-3 poop scale with 1 being awful, 3 being good and 2 being somewhere in between. Yesterday was a 3, today was a 2.
Rory went to ABA therapy for the second time (3 hours) and had a good session, then we went straight to occupational therapy (1 hour) and had a good session. Her behavior at home wasn’t perfect, but it also wasn’t awful, and aside from the plane ride (which really wasn’t that huge of a meltdown in the grand scheme of meltdowns, it was just more apparent because it was visible and mortifying!), her behavior has been reasonably good every day for a whole week now, which I’d say is her longest stretch of having mostly pleasant behavior since she was a baby. So it’s not a “wow” but more of a “whew.”
Cycle 7: Friday, June 22nd
Rory just went in to the basket full of clean laundry, picked out the red, white and black skirt that matches her red Minnie Mouse shirt I put her in for bed last night (I generally try to put her in something comfy that does double duty as jammies and clothes so there is one less thing to fight about in the morning) and put it on herself. She has been working on getting her clothes on and off in OT for quite a while, but I really think this is the first time she ever got dressed completely independently. Her skirt is on backward, but she is dressed!
Poop was another 3 (solid) today, I practically did a happy dance! (My husband totally made fun of me for how excited I was.)
Cycle 8: Saturday, June 23rd
Today was HUGE for Rory. We went to our friend Charlie’s birthday party and were there for 2 hours and 10 minutes without a single meltdown, I could NOT believe it. Birthday parties have been notoriously difficult in the past, and I often leave Rory at home instead of bringing her because I know that she isn’t usually able to handle them. This is even more spectacular when I say that we rode on a train for five rides in a row that lasted about 10 minutes each. This required Rory to sit straddling a wooden bench with her feet on the sides nicely, no seatbelt, hands to herself which would have been unheard of a few weeks ago for one ride let alone FIVE of them. She loved it! One ride she even went with our kiddos’ baseball coach Justin on a different train car than me. Compare this to our trips at Disney World where there were quite a few meltdowns when she had to sit still and behave herself. We also went to the playground afterward and she rode on the old-school spinning merry-go-round (that you push around in a circle and then jump on) with a huge smile on her face the whole time, bracing herself and holding on just like her brothers did. When it was time to leave, she came with me willingly and didn’t have any meltdowns at ALL, all day long, until halfway home when she was super hungry and hot, and even then she was able to settle herself down after a few minutes. A bunch of our baseball friends were there (shoutout to Jenna especially because I know she is reading this!), and they are definitely used to seeing Rory not at her best, and they noticed how well she did today too, so I know I’m not imagining things.
She also had ballet this morning, and I decided to try putting her hair in a little ponytail, which she hasn’t allowed me to do for months (she usually rips out the elastic and pulls a ton of hair out in the process so I stopped trying!). I had tried to style it for her recital earlier this month with no success, so the fact that she actually let me put it up and left in there until the ride home (when yes, she did pull it out) was amazing. In fact, that was one of the things I told myself I was going to watch for as a sign this was working.
Cycle 9: Sunday, June 24th
Today was less spectacular than yesterday but still a pretty decent day. We did have a bad poop this morning, which was a bit disheartening (maybe she snuck some gluten at the birthday party yesterday?), and we stayed home all day, which are always the hardest days since we all get cabin fever. But whereas normally at the end of cabin fever days I am practically in tears because she’s had so many meltdowns, today wasn’t all that trying. She spent much of the day bossing me around with her talker telling me which TV shows or movies she wanted me to put on for her, such a little dictator!
The one thing I did really notice today is how much Rory has been using her talker. She mostly uses it to request things that she wants, but I feel like she is starting to get more complex with her requests. Like she went to go get her jammies, and then put “jammies like” because they are her favorites. It is becoming much more routine for her to use her talker all the time and I feel like for the first time I am actually able to communicate with her back and forth. That might have nothing to do with the cells, but it is a gain nonetheless so worth recording! I am so excited for her to start with the new speech therapist who will be using PROMPT speech therapy to work on developing speech paired with AAC to develop language. CAN’T WAIT!
She just came out with her talker and is pushing “tired” over and over and saying “nigh-nigh” so that’s what we are going to do!
Cycle 10: Monday, June 25th
Rory had another bad poop this morning, which made me really sad, but I am still hopeful that it’s just some errant gluten causing that. Fingers crossed.
Today was another low-key, no-wow kind of day but of course I have a few observations. Last night when we went to bed, Rory and Owen (1.5) totally ganged up on me and refused to come to bed. The two of them were running around together giggling hysterically (seriously, this is the second time I have heard Rory giggle uncontrollably in forever, and it’s so beautiful!) and just being a normal brother and sister, and while part of me was over it because I was so tired, I took a deep breath and reminded myself to ENJOY IT! Watching the two of them be partners in crime was just so sweet and warmed my heart so much. One of our most-wanted gains was better behavior toward Owen, and I feel like we are starting to get there. She still refuses to share with him and hits and scratches him when he plays with things she thinks are hers (can that one go away next??) but there were multiple occasions today that she was hugging and kissing Owen and just smiling and being a sweet big sister to him. I am encouraging it as much as possible!
Rory and Owen have also been co-sleeping with us their whole lives, and while the big boys got transitioned out of our bed much earlier, we have been nervous to move Rory because she isn’t really able to understand and rationalize and we wanted her to feel safe and secure. But the bed is getting way too small, so last night Glenn put her in the “nest” of blankets we have on the floor for if/when the big kids get scared and want to come in our room, and while we expected her to wake up and freak out, she actually slept there the whole night until I had to wake her up in the morning. So we will see how tonight goes!
Cycle 11: Tuesday, June 26th
Yet another bad poop this afternoon, booooo!
Rory had a good day in ABA therapy today and a pretty good afternoon at home. She is not a drastically different child, but I do feel like she is at least slightly less obnoxious, for lack of a better word, than she used to be. My estimate was 50%, Glenn thinks it’s more like 10% less.
My one observation of the day is that Rory fell down, skinned her knee and cried about it! Her pain tolerance used to be so high from her sensory processing disorder that she would skin her knees and we wouldn’t know about it until we saw the boo-boos later. While of course I don’t like to see her sad, it was comforting to see a typical reaction of tears and looking to me to be comforted by me when she fell down.
Cycle 12: Wednesday, June 27th
Another bad poop.
When Rory woke up this morning I asked her what she wanted for breakfast and she said clear as day “yogurt.” Wouldn’t repeat it, but it just proves that the words are in there!
We went to the playground with friends this morning and had another lovely time playing which still feels like something new and different since it’s usually so stressful taking her places like this. She was pretty clingy with me when we first got there and wanted me to come with her and Owie up onto the bigger structure to go down the slide with them, but after a little while she was playing independently of me, and even trying to play with the other kids. No meltdowns when we left, either, though I can’t say the same for Owie!
We took Rory to an allergy/immunology doctor today to continue exploring what is going on with her food allergies. She poo-poo’ed the allergy test we’ve already had done (The Dunwoody 88-Complete Dietary Antigen test) and basically said that the way they explained IgE and IgG allergies is completely wrong. She told us we could do scratch testing in her office, but she told us that the only way scratch testing would show anything is if the allergy caused a rash or anaphylaxis, which we already knew wouldn’t happen since Rory’s symptoms are gastrointestinal. So we decided to do it to rule out the major allergies as another piece of the puzzle, but we realized it was essentially a waste of time, especially as we had to hold Rory’s arms so she couldn’t touch her back for 15 very, very long minutes of screaming hysterically. The scratches didn’t show any reaction to any of the big allergens plus almond, cashew and coconut since that’s what we use as substitutes. She suggested going back to gastro again (and graciously suggested a few doctors that might work better for us since our last one was so bad!) and that Rory will likely need a colonoscopy to figure out the cause of her gastro issues.
So needless to say, this is not something we WANT to do, so we are going to wait at least until we have made it through the rest of the stem-cell period and if it’s still not resolved, taken another stab at Rifaximin with added Grapefruit Seed Oil at the end (Rory’s stool test showed three bad bacteria in large concentrations and the way that she responded to the Rifaximin is indicative of these being the cause of her SIBO…since they are all sensitive to GSO, our MAPS doc suggested that if her gut issues are not resolved after the stem cells, that we do another round of Rifaximin and start the GSO again afterward for continued support to see if that helps keep her stools normal and wipe out the bacteria for good). Phew, that got long!
What else? Rory said “talker” multiple times today, a new word (which is what we call her iPad with Proloquo2Go).
She also has started “singing” in the car, which I tried really hard to get a video of but she stopped every time I got my phone out. No words, obviously, but a sweet little sing-song tune when she was listening to kids music.
Cycle 13: Thursday, June 28th
Today’s poop was a 2 on a 1-3 scale, which was better than yesterday, so there’s that. (And sorry for all of the poop talk, people, but I really believe that nothing major is going to happen with anything else until we get her gut fixed, so this is important and something I really want to track!)
I decided today was the day to start the “let’s wear pretty dresses occasionally instead of all Minnie Mouse all the time” battle, so I got the pretty purple dress with flowers on it out that I’d gotten hoping I could actually convince her to wear it. I’ve found that getting her dressed needs to be the last thing I do before leaving the house or she will take it right off again, but if we make it out of the house she’s good. So I even got her shoes on and then slipped the dress on last (got scratched in the process!), but then I realized that I had to take Owen with me to the therapy since Glenn had an eye doctor appointment, so I had to get him up and his diaper changed before we left the house. Rory went down the hall and I figured she would be naked when she reappeared, but amazingly she was still dressed when it was time to walk out the door, so woo hoo!
She had good days in ABA (started her first program at the table today, no stellar results, but she cooperated with zero bad behaviors) and OT, and while the afternoon has been a cabin fever-ish exercise in frustration, I was actually able to hold her in my lap and trim her nails while she squirmed and screamed instead of having to pin her down on the sofa with my legs to trim them while she squirmed and screamed, so that was a baby step in the right direction!
Also of note: we are doing a 3-day intensive potty training program with our ABA center where they come into our house from 8-12, 12-4 and 4-8 on Friday, Saturday and Sunday. EEK! It starts July 13th, so that will be “fun!”
Cycle 14: Friday, June 29th
This morning I picked another cute dress out for Rory to wear. This one had spaghetti straps, which she previously REFUSED to wear, like ever. She put it on without a fight, woo hoo! Then I took her in to brush teeth and put her hair in another little side ponytail, which she didn’t fight me on either.
I dropped off the boys at my parents’ house since today was Rory’s first day with our new SLP, so since I was kidless, I got to go back to both her OT and speech sessions, which was so fun! The last time I went back to OT with Rory was last September, so it has been forever. Previously, having me there was a huge distraction, and we decided that it was much better for Rory to go back without me, especially when Owen is around. But she did so well today! She is using her talker to request activities, and the first thing she requested was coloring. Tammie told me that she switched from straight down lines to scribbling, plus she learned to increase her pressure to a more normal amount instead of too little pressure. I asked if this was a new development and she said yes, just this week. So yay! Also of note, I have never really seen Rory do puzzles because she gets so frustrated and all over the place when we try to do them at home, but today I got to watch her and WOW! She did a 24-piece Dora puzzle that had smaller cardboard pieces, and while it took her a while, she finished the whole thing very methodically. Then she got to do one of the Paw Patrol puzzles she loves doing, but she requested to do it sitting on the “horse swing” which she previously refused to sit on because unstable surfaces were so disconcerting for her, but today it was her idea!
Nothing too exciting to report from her speech session, but we are doing a trial of LAMP and most likely will switch to that from Proloquo2Go, so I am excited to see how she does with it. Nicole took a video of Rory to study her mouth movements so she can start working on PROMPT with her in her Monday session. She made sure to touch her face quite a bit today to make sure Rory will cooperate with her, and she didn’t completely freak out. I suspect that Rory’s tactile averseness from her sensory processing disorder is finally starting to fade a bit, which is so promising to me. It has been such a huge challenge for Rory (and the rest of us).
Today’s poop was another 1. 🙁
While I was making dinner, Glenn, Carter, Owen and Rory were in the living room playing with a ball and balloons. Rory was actively participating and having fun, and it was so nice to listen to my happy family playing while I made cooked with Collin. Also, Collin had pulled a chair out to the stove to help me cook and when Rory saw that she went out to the office and dragged the matching chair all the way into the kitchen herself and climbed up on it so she could watch us. She quickly lost interest, but I’ve never seen her try anything like that before.
Glenn and I were talking about Rory tonight after dinner and we both had the same thought today: that Rory is acting more like a normal little kid than she ever has before. Since we had the stem cell treatment two weeks ago today, we have yet to have a really bad day…bad moments, yes, but no bad days. That is HUGE! Our longest streak of good days before was SIX and that was when she was on the Rifaximin. We were talking today about whether we are going to do another round of stem cells after 3-6 months, and while it’s too soon to make that decision, we are both leaning toward yes, and just hoping that nothing happens that will prevent us from a repeat performance (e.g. a drastic price increase).
As I am typing this update, Rory is sitting next to me playing on my phone with the Monkey Preschool Lunchbox app, something she NEVER had the patience or ability to do before stem cells. The only things she would do on my phone before were look at my pictures, and open all of my apps without actually doing anything. (She would occasionally look at the signs in the baby sign language app too, but it didn’t require her to actively play anything.) She is sitting with Carter and Collin, virtually doing matching cards, identifying colors and doing puzzles!!!
Today is giving me hope!
Cycle 15: Saturday, June 30th
Sometimes we get excited about Rory acting like a normal kid, but there’s nothing like her ballet class to remind me how far we still have to go. She is in the summer session of creative movement, while all but one of the other kids from her Crocodile Rock class moved up to the big kid classes so it’s all new and younger kiddos with her now. Even though they are little, they very easily do things like hop in hula hoops and attempt plies and ballerina turns, but while Rory is very well behaved and doesn’t cause any disruption (how I KNOW she loves it!) she also isn’t able to do any of the simple ballet technique being taught. I’m not giving up yet, and we are so excited that her amazing dance teacher will have a class for special needs kiddos starting in the fall, but gosh, it’s hard to see how hard everything is for my girl. I know how much I loved dancing when I was her age, and I just want that ease and joy of movement for her, so that even if she can’t talk she can still express herself.
At lunchtime today I asked Rory what she wanted and she pushed the button for Chipotle. I told her no, we were getting (push button) Boston Market. She deleted Boston Market, then went back and pushed Chipotle five more times. So needless to say for how well she communicated, we stopped next door and grabbed her some Chipotle too!
Today Rory discovered my old teddy bears Mitzi and Betty Bear. They have been sitting on her dresser forever and she has shown no interest but today on her own she pulled them down, gave them hugs and took them on the rocking horse with her. It was so sweet!
Cycle 16: Sunday, July 1st
Most of the day was pretty unremarkable until CeeCee and Grampy came over for dinner. Usually Rory is a big nightmare when we have company for dinner, and we actually don’t do it very often because she is stressful. Today she was pretty delightful! No fussing during dinner. She asked for a puzzle when she was done eating and did her Minnie Mouse puzzle for CeeCee (she also did Toy Story, Minnie, Doc and Cars puzzles yesterday and today at home…we have discovered that as long as she is in a calm mood and not distracted, she is really good at them, but if she is not calm and is distracted, she gets frustrated and can’t do more than a few pieces). After dinner we put on music and she was dancing up a storm and jumping too. She nicely gave hugs when it was time for them to leave too.
Just being able to enjoy peaceful family time instead of walking on eggshells and trying to mitigate her bad behavior is huge for me. I was thinking the other day that one of the biggest changes I have noticed since her treatment is in MYSELF. I am calmer overall and have been able to be a better mom to all four kiddos. There is less weight on my shoulders. I’m smiling more. Our family deserves this change.
Rory didn’t scream when I brushed her teeth tonight for the first time in her life. I still pinned her down to do it and she still clamped down instead of opening and letting me brush, but no screaming!
Cycle 17: Monday, July 2nd
Rory didn’t cry when I changed her diaper this morning and we had the easiest time getting up and ready that I think we have ever had. It is usually a BATTLE and I feel like I’ve run a marathon before we leave the house.
Rory had a great OT session (not sure about PT, I didn’t see her therapist) but then a pretty rough time with her new SLP. I think what it came down to was she was thirsty and wanted a drink, because once Nicole gave her some water she settled down and started cooperating. It was the first time I have really seen an agitated, cranky, awful Rory in a while, but I am confident they will be able to work through this. Sometimes new people are hard, but I fully believe Nicole is the right SLP to help her!
The afternoon (we attempted to go to a pool party at the Y but had the wrong date so we ended up having sprinkler time in our yard instead, which I think was just a frustrating and exhausting change for her) and dinnertime were a bit rough, she was tired and falling in to bad habits. I declared that our good streak of days might be over, but then I changed her diaper and found some solid poop. So that on its own restores the good day streak!
Cycle 18: Tuesday, July 3rd
We are huge proponents of co-sleeping in our family. It started after I spent the better part of a <sleepless> year trying to get Carter to sleep in his crib and nearly losing my mind in the process. As soon as we brought him into bed with us, he slept like a champ, so once we discovered that secret and learned how to co-sleep safely, all of our babies/toddlers have slept with us. Now there were times that we worried we would have 18 year olds in our bed, but believe it or not, both Carter and Collin did eventually transition out of our bed into the “nest” aka some blankets on the floor next to our bed (don’t make them TOO comfortable there), and then transitioned into their own beds in their own bedroom, though they are always allowed to come into the nest if they wake up, and Collin almost always ends up there. While the big boys transitioned out of our bed once they were big enough to have a discussion about it, we haven’t yet gotten to that stage with Rory and so she has stayed in our bed longer than her big bubbas for sure. But with toddler Owie taking up more space, it was time to make a change with Rory, though we were anticipating a huge battle and were pretty nervous about it. Once we got back from our stem cell trip, we decided to give it a go, and as I noted in cycle 10, Glenn moved her into the nest once she fell asleep and she actually stayed there the whole night. Since then we have had a few nights that she has ended up back in her bed, but she has mostly been doing great sleeping on her own!
The reason for this whole introduction is to tell two sweet stories. Last night she woke up around 2 in the morning and was fussing to the point that Glenn and I both woke up. She was sitting up pointing at Glenn’s nightstand and I heard him ask her if she was thirsty. In my half-conscious state I got up to go to the bathroom and grabbed her pink cup from my nightstand and gave it to her. She had a few sips, then lay back down and went right back to sleep! She stayed there for the rest of the night, too.
Around 7:15 this morning I felt a presence staring at me and felt a little hand tap me. I opened my eyes and Rory was standing next to the bed looking sweetly at me. I pulled back the covers and pat the bed and she climbed in and gave me the best snuggles. Rory has never really resisted affection like a lot of spectrum kids do, but she’s also never been overly affectionate. So for her to initiate a snuggle session was just so wonderful. We snuggled until it was time to get up for the day at 7:30. The little look on her face in this picture makes me so happy!
Poop was a “2” today.
Cycle 19: Wednesday, July 4th
To get Rory and Owen to sleep these days we have to divide and conquer. Despite co-sleeping with them in our bedroom, if they are in the same room at bedtime, they feed off of each other and bounce off the walls until the wee hours of the morning. So Glenn has been taking one of them out of our room to go out to the living room with him, and while that was formerly Rory who went with him because she was the most difficult one, lately that child has been Owen because he is SO hard to settle down now that we are done nursing. Last night, Rory asserted that SHE wanted her place back with Dada. She grabbed his hand and led him out of the bedroom. I laughed and said, “night night, Rory!” “Night night!” she called happily as she walked down the hall with him.
Today is the 4th of July (also the 23 year anniversary of when Glenn and I started dating!) and we have just had a low-key day at home. I had a cute 4th of July outfit picked out with hopes she would wear it (red shirt with a flag-sequined heart and a blue polka dot skirt) and while she rejected it when I first tried to get her dressed, she actually put it on when it was time to leave the house, woo hoo! I took Rory and Owen to Publix (grocery store) and aside from refusing to let Owen hold the little recipe cards I picked up to occupy him and making him cry twice about it, they were both actually quite good and sweet, which is always a crapshoot these days!
Nothing else spectacular to report aside from another “2” poop.
We meet with the geneticist tomorrow about Rory’s chromosome disorder. I am excited to see what he has to say and nervous, too.
Cycle 20: Thursday, July 5th
Today was not awful, but not great either. We took Rory to her first geneticist appointment to talk about her microduplication of 15q11.2 and didn’t learn much new info but did get a few new gems that may be helpful and we will likely have whole exome sequencing done to see if there is anything else going on with her. Behavior-wise at the appointment she was very hard to control and keep pacified so we could actually hear the very smart doctor who was rattling off information like the Micromachines guy from the 80s but we survived without any huge meltdowns, so…win?
For the rest of the day, Rory was kind of cranky and antagonistic. She beat up on Owen more than she has been doing lately, and was cranky with Glenn.
She did have a good session at OT. Tammie pushed her to go on the Bonzu ball, which isn’t something she requested to do, but she said she was half-way fussing and half-way laughing the whole time she was on it, silly girl.
She had an awful #1 poop, is that related to her behavior?
I spent some time in LAMP today adding all of Rory’s favorite people in their correct locations with those words, like her boyfriend Connor is with “boyfriend,” her neighbors Jack, Meridith and Marty are with “neighbor” and her friends Ava and Lily are with “friend.” LAMP is all based on motor planning, so every word is only in one place (sometimes it seems a bit weird where it’s located but there is usually a good reason for it) versus Proloquo2Go that she is currently using that puts the same words in multiple places. It felt counter intuitive at first to organize things the way LAMP does, but the more I learn about it, the more I agree with it. You can see Rory here using her talker to navigate to Ava and Lily: Video of Rory’s Talker
Cycle 21: Friday, July 6th
This morning Owen woke me up and we snuggled in bed for a few minutes before we got up. On my way to the bathroom, I looked in the nest where Rory was sleeping and she was gone! While I was sleeping she got up and went out to the living room with Carter and Collin and the three of them were watching Pokemon peacefully together when we got out there. She’s never done that before! The big boys have been getting themselves up, getting breakfast and watching TV while I slept for years now, so it was something I took for granted with them.
Last night Glenn told me she woke up in the nest while he was still awake. Normally she would climb up into our bed, but he just ignored her while she fussed for a little bit hoping she would go back to sleep. Then he felt her little hand reach up and take his hand. He held her hand until she fell back asleep and she stayed there until morning.
She requested “chips” with her talker this morning and I said no, it’s too early for chips and she said “cracker” plain as day. She definitely got some crackers!
Today has been a really lovely day. I think I saw other stem cell friends note that when they have bad days it usually means there are gains and good days around the corner, so I think that’s what yesterday was, and considering what used to be a normal day for us is now a challenging day, I will take it!
Rory had great OT and speech sessions. She was much nicer to Nicole today (phew!) and was actually excited to go back with her. I feel very strongly that making this change is going to be good for her. As much as we love our previous speech therapist (for real, she was the first therapist to actually “get a name” from Rory), I think Rory really needs someone who really understands apraxia, and Nicole is that person. She really impresses me with how much she thinks about everything and plans for the best ways to get through to our kids. She even wants to have a parent social event where we can only use our kiddos “talkers” to communicate so we truly understand what it’s like to be them.
We had friends visit from Arkansas who we hadn’t seen since Collin was a baby. They knew nothing about Rory’s issues until we told them today, and they were shocked to hear everything we have been through with her for the past two years. Rory was sleeping when they got here, and thankfully when she woke up, she was happy Rory. She totally charmed our friend Julie, and she was Rory’s new BFF. We went to our lake and fed the ducks (Owie fell into the lake for the first time!) and just had a really nice visit with them. I am so used to being on complete alert when we have guests and really having to juggle and sweat to keep her from being a huge distraction to everyone, but today it was easy. It is easy to take for granted, but I swear I never will.
It’s been one of those really good days where I feel like my heart might burst and I’m right on the verge of tears pretty much all the time. This special needs parent gig is just SO HARD sometimes, but I know I will be a better person for it. I’m just so proud of the strides she is making and so hopeful for what comes next. I was telling my friend Tracie today that I really believe that the universe, or whatever you’d like to call it, is guiding me on this journey and I try really hard to pay attention to signs along the way. We have been making very slow progress with Rory for a long time now and while I have been ready for her to start making big leaps, it just hasn’t come. It might still be slow progress that we continue to make, but I just feel it in my bones that she is getting ready for something big.
Cycle 22: Saturday, July 7th
After awful poop on Thursday and no poop yesterday, Rory had a #3 (good!) poop this morning. It can’t be coincidence that the worst poop and the worst behavior she has had since stem cells were on the same day, and then good poop and good behavior are also tied together. We have been trying to figure out her gut issues for 10 months now, and I just want them to resolve because I know in MY gut that fixing HER gut will help her make progress in other ways too.
Glenn got her dressed today and to convince her to wear this cute (never-been-worn) dress, he told her it was Doc McStuffins’ dress. It’s totally NOT, nor does it look anything like anything Doc would wear, but it was very creative use of Rory inspiration and it worked! Go Dada! When I changed her diaper later, the package has Minnie pullups and Doc pullups in it, and she has already worn all of the Doc ones. I went to put a Minnie one on her and she gestured to her “Doc dress” to tell me she wanted Doc instead. Thankfully there was one more Doc one hiding that I gave her.
Today was decent, though Rory got way overstimulated when my parents came over for lunch and was a huge handful. And then this evening we could tell she wasn’t at her best and she threw up when we were hanging out with our neighbors outside (run Glass family, run!). She has been totally fine since, and ate dinner too, so we are hoping it was just a fluke but preparing for the worst tonight.
Update from CeeCee (my mom, Rory’s grandmother): She was going forward on her trike when I said STOP! And she stopped! Then I said GO and she did. She did this five times! Laughing all the time. Then she fell and skinned her knee. Didn’t feel it.
Cycle 23: Sunday, July 8th
Poop was another 3 today. I am not getting my hopes too high, but maybe this time we are finally on a permanent upswing there?
Behavior was also pretty good today and I feel like her communication overall has been so much better lately. Today was our first full day locking Rory into LAMP and not falling back on Proloquo2Go, and she has done great with it! I finally got everything programmed yesterday and today, and she has very easily learned where all of the words she needs on a regular basis are located. We will continue to add new words in regularly as she learns how to use them. I feel really good, well at least mostly good, about our decision to switch her over, and I think it will be a positive change in the long run. I WISH I HAD GOTTEN HER AAC SOONER. If you are reading this with a non-verbal or pre-verbal kid and are still resisting it, don’t!!
Rory and Owen stayed home with Glenn today while I took the big boys to go play with their friends at a big indoor play place. (Even if Rory’s behavior is better, I still wasn’t crazy enough to take FOUR KIDS there on a Sunday!) Her new favorite is Doc McStuffins, so they were watching Doc. At one point Rory got her talker and found Stop, then pointed to her diaper (Doc). Then she did the sign for music, made her dinosaur sound, and found the dinosaur on her talker. So Glenn put on Laurie Berkner: We Are the Dinosaurs, and that was exactly what she was asking for. It would be so nice for her to actually use words to say that, and I am hoping we will get there, but it’s huge for her to be able to get her point across now and convey exactly what she wanted and have us understand exactly what she wanted.
Rory is more interested overall in normal kid stuff like riding her tricycle and doing puzzles. I am still so impressed with how well she can do puzzles, I just really had no idea! She has been so much more sweet and loving lately too. As I type this she is sprawled across my lap playing with Magformers and smiling at me.
There were some things that made me incredibly frustrated today, but Rory’s behavior had NOTHING to do with my frustration, and that is huge.
Cycle 24: Monday, July 9th
Rory was pretty good today. We went to Publix this morning, and she basically demanded that we go. She told me “go” on her talker, dragged me into her room to get dressed (in another of “Doc’s dresses” which was seriously the most genius kid hack my husband has ever come up with, and I am so excited to see her wearing all of these cute dresses that have been languishing in her drawer!), brought me her shoes and socks and dragged me out the door. She was home all day yesterday and was obviously NOT intending for today to be a repeat.
We had planned to have Rory’s MRI done today, a year after we initially discussed it with the neurologist. I’d completely chickened out because I am so freaked out by anesthesia, but once we had figured out her MTHFR status and allergies and knew what precautions to take (did you know you can’t have propofol if you have an egg or soy allergy, and if you have a MTHFR mutation you shouldn’t have nitrous oxide?) I finally scheduled it for this morning. However the more I thought about it the more I freaked out about the anesthesia affecting the stem cells. So we rescheduled for September, lol. No therapy because we’d cancelled for the MRI, so it was nice to have a lazy day.
We had our HBOT consultation with the new chiropractor we will be seeing. She was very interested that Rory had fallen and hit her head at 11 months and was shocked no one had ever recommended that she be adjusted. It was going to be a stretch financially to afford a few HBOT sessions and now she wants to do chirpractic and BEMER magnet therapy and cold laser therapy and foot bath detoxing, and all kinds of crazy-cool treatments. I’m hoping at the least we can get Rory’s Medicaid/CMS to cover the chiropractic adjustments, so I need to figure that out.
When we were leaving the house for our walk tonight, we could only find one of Owen’s monkey shoes, so I asked everyone to help me look for the other monkey shoe. Carter and I were both looking for it unsuccessfully when Rory walked over and handed it to me. Woo hoo!!
On our walk, Collin was pushing the double stroller with Rory and Owen in it and I usually hold Owen’s hand while we walk. I asked Rory if she wanted to hold me hand and she said “no, bubba” telling me to hold Owen’s hand. A sentence! Woo hoo!!
Poop was weird today. Part 3, part 1 in the same diaper. Curious to see what tomorrow brings and racking my brain trying to figure out if there was something we did/ate yesterday that would cause her to have a reaction. The big difference is that before it didn’t matter what we did, her poop was always awful and I couldn’t troubleshoot to see what was causing issues. Now I can.
Rory has found “sleep” and “tired” on her talker and is obviously ready for bed, so I’m going to wrap this up!
Forgot to add that Rory woke up hysterical in the middle of the night after I wrote this post. We think she had a nightmare, which has never really happened before. I went to lie down with her and was finally able to get her settled down and back to sleep.
Cycle 25: Tuesday, July 10th
I am finding that usually when there is a good day, the next day is pretty meh. Nothing much exciting to report except a #3 poop this evening (which ok, I lied, is pretty exciting, even if the rest of the day wasn’t a standout!). Rory was in ABA for four hours so I didn’t see her for half of the day, and since she didn’t nap, she has been cranky, no-nap Rory for the afternoon and evening. She’s tired, I’m tired, and we’re both ready for bed!
On a side note, since I haven’t talked much about the boys lately, yesterday Owen started saying, “I did it!” and today, “What’s that?” SENTENCES!! GO OWIE!! Carter had his first piano lesson today and is ready to take the music world by storm. And we are going to start Mommy-Collin cooking time together since Carter is starting piano, and I think I may have a budding chef on my hands. Rory won the lottery when she got these three guys as her brother. While they may not always have all the patience in the world with her, she is going to get so much from her relationship with them.
Rory had another nightmare episode after I wrote this post. She woke up around 2am screaming “mommy, mommy, mommy!” over and over. I went to lie down with her again and it took her a while to settle back down. When I thought she was asleep I got up and went back to bed, but 20 seconds later she followed me and climbed into bed with me. She refused to let me curl up with her, but slept in our bed all night, sheesh!
Cycle 26: Wednesday, July 11th
Today was one of the roughest days we’ve had for a while. Rory has been agitated and just not at her best all day long. Her speech session was decent, but she had the worst PT session she’s had in ages, not listening or following directions, and had huge meltdowns (we could hear her screaming from the waiting room). I have noticed that when she gets really frustrated she “mouths” things, from the remote control to the clip on her car seat, to her shirt, and I’ve seen her doing this all day long. I have also noticed on her bad days she compulsively has to hit Owen when she gets in the car, and I caught her doing that multiple times today. She also had an awful #1 poop this afternoon which didn’t surprise me in the least. Something is definitely up. We went to baseball practice to watch the boys this evening and only lasted for 45 minutes because she took her shoes and socks off and kept running away from me. It really felt like the “old days” again, and I have been scratched about a million times, yelled more than I’ve yelled in the past month, and sent Rory to timeout multiple times. Of course having a splitting headache all day has not helped my patience, but this is the first time I have felt this frustrated and angry at the end of the day in a long time and it makes me sad. I hope it’s just one of those cha-cha, taking a step back before we move forward kind of moments.
On a positive note, Rory and Glenn had their first session at the new chiropractor we are seeing. She did BioCranial Therapy on Rory (a gentle form of chiropractic similar to craniosacral therapy), then BEMER magnet therapy, then Glenn and Rory went into the hyperbaric oxygen chamber together for HBOT. Glenn said it was super loud and they initially set the pressure really high to the point that his ears were popping like crazy and Rory was tugging at her ears and starting to freak out. They had a walkie talkie and were told if that happened to buzz them and they could release some of the pressure, so once that happened, Rory settled down. They watched Netflix on the iPad until Rory fell asleep, so in the grand scheme of what we were expecting with a super cranky Rory, it actually went really well.
I swear Rory said “yeah” today when I asked her a question, which we have been trying to get out of her for over a year and never even come close before. Will keep working on it with her and see if it was a fluke.
I also noticed while I was cooking dinner tonight that Rory snuck out to Glenn’s office with a very sly grin on her face and got CeeCee’s iPad (that they took in the chamber today) off of Glenn’s desk and sat in the chair playing with it. I was watching her the whole time and it was really cute to see her being sneaky and actually understanding that she was being sneaky. So not a total bust of a day.
Let’s hope tomorrow is better!
Cycle 27: Thursday, July 12th
This morning started out equally as bad as yesterday. Rory fought me getting dressed, refused to keep her clothes on, fought me getting her shoes on, screamed while I changed her diaper (poop was about a 1.5, not the worst but still pretty bad), and was just generally cranky while we were trying to get out of the house to therapy (this used to happen every single day). She hurt Owen when she got in the car, and then proceeded to scream at the top of her lungs hysterically when I yelled at her and buckled her in. We backed halfway out the driveway and I realized I didn’t have her bag with me, so I had to go back inside to get it. I was in such a tizzy that I burst into tears, freaked out Carter and Collin when I came inside crying, then got back into the car still crying. What’s interesting though is that when she saw I was crying she immediately stopped her meltdown and sat nicely and quietly in her seat all the way to therapy, so hooray for empathy. I calmed myself down quickly too, and when we got to therapy, I asked her for a hug, and she gave me a big hug and sat in my lap for a few minutes while we waited for Rachel. She had a reasonably good day at ABA (though she has had some “problem behaviors” these past few sessions), then we got Chick-fil-a for lunch (let me tell you how “fun” it is to eat in the car with Rory and Owen, sheesh!) and went straight to OT where she had another reasonably good session. She fell asleep on the way home and had a really long nap. The rest of the day was slightly dicey with her refusing to eat her dinner and screaming a lot at the table, being mean to Owen, and getting into everything while Glenn and I were trying to get the house cleaned up tonight. But once Glenn stopped cleaning and gave her some attention, she has been pretty good. I suspect she will be up for a while tonight after that long, late nap.
Tomorrow begins our “potty training boot camp” with Rory’s ABA therapists. We will have a therapist here working with her from 8-12, 12-4 and 4-8 on Friday, Saturday and Sunday. I am totally nervous about how this is going to go, but our bathrooms have been scrubbed, our house isn’t a complete disaster, and I have plenty of juice and treats and cleaning supplies ready for them. Wish us luck!
Cycle 28: Friday, July 13th
Hello from the loony bin! It’s 1:29pm and we are officially 5 hours and 29 minutes into Rory’s potty training adventure. Her first four hours were AWESOME! Her ABA therapist Rachel was here and they seriously had a party the whole time she was here. I was floored at how much energy and enthusiasm Rachel was able to muster for Minnie Mouse and Doc McStuffins. Rory had one accident but two partial successes (started an accident but finished in the potty) and was completely happy the whole time.
At noon Sarah came to take the next shift and while they started out ok, something set Rory off while we were eating lunch (Rory has been snacking all morning so she just stayed in potty central while we ate) and she completely lost it. It was the worst I have ever seen her, like ever. Mommy wasn’t allowed in the bathroom until she stopped screaming and asked for me nicely, so I had to stay in the living room with Owen and listen to her scream for a while which was HARD. However when she finally settled down and I got to go in there, it was worse, because she was completely spiraled out of control. Scratching, biting (she bit my ankle, sheesh!), kicking and just screaming hysterically. Anything we tried to distract her with, she threw. It. Was. Awful. Now normally when Rory gets like this we do pretty much whatever we need to do make it stop (which is not the correct thing to do) but with a certified behavior specialist there I just took her lead and we pushed through it. Sarah and I tried to think of different things to distract her and she finally mentioned bubbles, which was the magic fix. I fetched bubbles, made my exit and they are in there having a blast with bubbles now, go figure. To be continued…
The rest of Sarah’s shift went muuuuch better than the meltdown. Rory however, managed not to pee the entire time, crazy girl! Blair took the third shift and got two partial successes and one completely independent success. Rory pointed at the potty and she helped her up and she went on her own. Woo hoo!! Later, after eating her weight in cantaloupe, Rory went and sat on the potty on her own again and didn’t go, but then a few minutes later she had a poop accident. So I think she knew something was up and just wasn’t sure how to handle it. We ended the session an hour early because she completely passed out in the bathroom, silly girl. I got her dressed while she slept and carried her to bed. Tomorrow starts the second day of fun!
Cycle 29: Saturday, July 14th
Hello from the second day in potty training central. Our morning started out with Monica and included a partial success, and then complete awesomeness when she used her talker to say “go potty” and then went over on her own, sat on the potty and peed, woo hoo! The therapists’ plan is very specific against asking if she has to go potty because they don’t want her to rely on our prompts and would rather she listen to her body and go potty on her own. I was a bit skeptical, because every bone in my body wants to keep encouraging her to go potty, sit on the potty, try to go potty!!! But NO! Resist, mama! Then I left to go eat a late breakfast (Glenn and I are doing intermittent fasting) and there was a major meltdown and a complete accident. Whomp whomp.
Our afternoon with Rachel was delightful though. She had two partial successes, and then the BEST of the day, she went over to the potty on her own and went poop! (And because you know I checked, it was a #3!) Then as we were celebrating she went back on the potty again and peed! So exciting. Because she had two successes, they finally expanded her world a bit to include her room with the bathroom. Mei came at 4pm and she is in with Rory now, with helpers Carter and Collin who hopefully aren’t bugging them too much. Owie and I are taking a break to watch some Mickey Mouse.
Rory has been subsisting completely on juice (and I’ve been filling up juice boxes with water and electrolyte mix for most of those), fruit and her weight in chips. She finally ate some chicken sausage a little while ago which is the first protein she’s had in ages.
I haven’t heard anything since I came out here a little while ago, but hopefully there will be more celebrating soon, though since she is in her bedroom, I don’t have the highest of hopes for this one!
Cycle 30: Sunday, July 15th
We survived our 3-day potty training session! Rory had a great morning and was so excited to have the run of the house. She has really taken to “manding” (which is the ABA word for asking for something) on her talker for “potty” and did really well making it from other rooms in the house into the bathroom and going potty on her own. She quickly got underpants added, and then skorts, and did really well with those too. But in her afternoon shift I think she just got tired and she had three peepee accidents <on the couch, on the spots NOT well covered with towels> in a row. Once we went back down to nothing on her bottom she had another success, but it was still a discouraging way to wrap things up. Actually, at the end of the session she manded for the potty 6 times in a row, sat on the potty but didn’t do anything. I had a minor internal panic attack when Rachel left at 8pm and I realized we were on our own. We cancelled all of our therapy for Monday and will be here on our own trying to keep things going. We got no poop all day so I know it’s got to be coming soon.
I’ve hardly been able to think about “normal” gains the past three days but I think it’s important to note that aside from a few problem behaviors and two huge meltdowns, Rory’s behavior was quite good. She has been happy and sweet and giggly. She has loved all of the attention she’s gotten!
The coolest speech gain I noticed was when Rachel was telling me a story about how they have to be very consistent with children in their sessions, and that they spent an entire hour telling a little boy “say Friday, say Friday, say Friday, say Friday” after which the little boy finally said Friday and so did Rory! Rachel and I both were like WHAT?? There have been plenty of other moments like these that I didn’t record and my brain is too tired to remember, but it has been cool to see glimpses of speech out of her. I am so ready to get her consistently in speech therapy again and it kills me that we have to stay home today and likely the rest of the week too right now!
Cycle 31: Monday, July 16th
Today was a pretty decent potty day that started out not so great. She had two accident successes first thing this morning (after her succession of accidents yesterday evening), one on me, but has been successful for the whole rest of the day. The catch? She hasn’t pooped since Saturday afternoon! So I feel like she is a ticking time bomb in that department. We were home all day today, but will finally get to leave the house to go to ABA tomorrow morning, which is pretty exciting…for me, anyway. Get me the heck out of here!
Of note today, Rory and Owen were building a tower with blocks together. There was barely any fighting between them all day, which is pretty huge, and I feel like Rory has just recently figured out how to build with our big Quatro Lego blocks appropriately. We also got out her little people bin with all of the miscellaneous character figurines she has, plus all of the actual Little People accessories we’ve collected through four children including a house, school, castle, airplane and a ton of actual people. She was actually doing some pretend play with them, making the princesses dance and go up and down the stairs. She also gave kisses to Anna and Elsa. This is not usual stuff for Rory. She has really never played with any of her toys at home until these past few weeks, so the fact that she has been interested in them has been exciting!
Well she has tried to go potty twice since I started writing this and just asked for it on her talker again, nothing the first two times (I even got out her potty seat insert in case she was having trouble getting comfortable enough to poop!) but I just heard clapping so it sounds like she at least went pee again with Dada. Deep breaths, we can do this!