Time to start tracking another round of stem cells for our sweet Rory! We did 2cc Predictive Corecyte for this round. After trying several weeks ago and having a big fat fail getting the IV for her and then having to reschedule when our family got the dreaded norovirus on the reschedule date (and giving the virus some time to work its way out of her system), we finally got her third SCT on Monday, February 11th. They tried to get an IV one time and while they almost had the vein, it blew on us. I had approached the doctor before we went about using IM (intra-muscular) instead of IV as a backup plan since we know plenty of friends who have done well with it, and they agreed. So to avoid futher IV torture, Rory got an injection in her gluteus (actually two jabs since she is freakishly strong) and the stem cells are hopefully hard at work in her body. We are expecting the gains to take a bit longer this round because IM is slower release versus IV which goes directly into the blood stream, but we will see!
Nothing crazy to report on the day of the injection. She slept a lot (we give her chewable Benadryl in case of allergic reaction) and was very chatty, just as she has been the past few weeks. Rory is trying lots of new words every day now. I stopped counting her words last month at 175, but I would guess she’s probably around 300 now? The latest to blow our socks off was “yellow” which is a hard word to say anyway, let alone for someone with major speech issues. But it’s always such a pleasant surprise to hear new words come out of her mouth. Our main goal for this round is to get more conversational speech out of Rory: Having her start to put more words together in a string. Having her start to answer questions, even if it’s only one word; like what she did at school, etc. And better behavior would also be fabulous. Bring on the gains!
Day 1: February 12, 2019
Rory had special chapel at school, where her class got up to sing a song. Owen and I were sitting there waiting to watch when her class walked in. She actively looked for us, then smiled and waved multiple times when she saw us, which was sweet. She didn’t sing, of course, but did a little bit of dancing on the stage. | We went to the bathroom when we got to therapy, and there was a sign on the wall. Rory looked at the sign and pointed to all of the A’s on the sign, saying A verbally each time. She has been recognizing her letters more and more but that was the first time I saw her actually use the knowledge contextually like that. | When we went to bed, she told me “Daddy night night” because Glenn was working. I told her to go tell Daddy night night and she ran out to his office and said “night night Daddy!” | #3 poop (on a scale of 1 to 3 with 1 being unformed and 3 being formed), but since this is becoming a common thing now, I might not have to track it as much anymore! I am thrilled for that gain we got from CBD oil starting on 12/24/18.
Day 2: February 13, 2019
Rory is doing “me box” at school tomorrow and she has been SO EXCITED about it. They sent the box home last Tuesday which is blue, and she has been saying “blue blue blue” non-stop trying to get it to put things in the box. We actually collected her items yesterday (things she can say so she will hopefully be able to present to the class tomorrow with help from her ABA therapist), and then put the box away so she doesn’t destroy it. Today she actually asked for “blue box” which is huge because she doesn’t usually put many two-word combos together (with the exception of hi ___ and bye ___) so an adjective-noun combo was cool! | She also did some motor imitation in her small group at ABA today (they have it structured like school) that is out of her wheelhouse. Motor planning is super hard for her, so I’m hoping that she has more gains in this area. | Major whistle-screeching on the way home from speech therapy, which made Owen cry, which made Rory screech more. Fun!! Need to figure a way to get her second CBD dose into her earlier on therapy days, which will hopefully settle this routine. | #3 poop accident-success this afternoon (she finished in the potty). | Just brought me a book and said “book” verbally, then sat in my lap while I read it to her. She then brought the Elmo letter box over and is sitting nicely with Owen looking at the letters…actually as I typed this she took it over to the dining room table where she is continuing to sit and look at the letters nicely. Who is this kid? | At bedtime, Rory and Owen were standing in front of the full-length mirror in our bedroom making faces and laughing hysterically together. It was so sweet! I didn’t think they would ever go to bed because they were so wound up, but Rory actually curled up with me in bed, put her head on my chest, let me sing her a song, and then fell asleep!
Day 3: February 14, 2019
Happy Valentine’s Day! Rory had so many cool gains today! The morning started pretty rough, with her having a complete meltdown over which shoes Owen was wearing and she was wearing. Shoes are always a major stressor in our house! She was also completely fixated on the “me box” for school today. Mornings in general are hard–getting four kids ready and out of the house feels monumental each and every day and we are almost always running late and stressed out–but this morning was particularly hard, and I was in tears as we left for her school. Rory was so agitated from the morning, I thought she would have an awful day at school. But walking into school, she saw one of the little boys from her class. There are a ton of little boys, so I wasn’t sure what his name was. I asked her what his name was and she said “Jacky.” I confirmed with his mom that yes, his name is Jack! It was the first time Rory has ever been able to tell me something I didn’t know about her life. Little for some kids, but a BIG deal for Rory. | I will get the full report on the me box from Rachel tomorrow, but on our drive home from school, I asked her what was in her blue box. “Doc,” she said first (Doc McStuffins doll). “Minnie,” she said next (Minnie stuffed animal). “Yellow monkey” (Are you kidding me that she just put those words together on her own?!). And a picture of…. “Kirkie.” She wasn’t able to list off the black kitten stuffed animal, but she actually told me verbally four of the five things in the box!! HUGE!! | This evening I told Rory we were going to go to CeeCee and Grampy’s house since Glenn and the boys were at baseball. They had big plastic Santa, Mrs. Santa and a snowman figures outside for Christmas and Rory LOVED them. Now they are lying down on their sides in the closet, and Rory (hesitantly) always wants to go say hi to them, and we tell her they are going night night. When I told her we were going to CeeCee’s house, she verbally said to me, “Chilly Santa night night CeeCee” her first complete thought and 4-word “sentence”!!!!! | Another thing I’ve noticed the past few days is that Rory has started patting Owen on the head. This is a one million percent improvement over scratching his face and pulling his hair (which she still does, too, but less) so I am loving it! #2 poop in the potty this morning.
Day 4: February 15, 2019
Today was a mostly so-so day without much to report. She was crankier than usual in ABA with more refusals and problem behavior (whining, crying) than she has had in ages. Total of 6ish minutes–so nothing like what we get at home–but way more than usual. | Speech was pretty low key too. The funniest thing she kept saying to Nicole on her talker was “dinosaur garage” which I laughed because we finally moved Huggie the Dinosaur skeleton from our porch where he has lived since before Halloween, into the garage a few days ago. | Lots of whistle screeching on the way home from speech. She’s definitely going too long in between CBD doses. | This afternoon, she said potty on her talker, and we told her to hurry and go. She ran ahead of me, sat on her little potty and pooped a #3 poop in the potty successfully! Now for the record, Rory potty trained in July after her first SCT but it has been slow going with lots of accidents. If she poops in the morning, it’s usually in the potty, but if she doesn’t, she often has a poop accident in the afternoon. So the fact that she was partially successful two days ago and successful today was huge! She has also woken up dry every morning for as long as I can remember, so while I’m not quite ready to let her sleep in our bed, because she almost always ends up there, without a pull-up on, I can finally see that happening in the not-so-distant future. | I let her play on my phone tonight, and she loves playing Monkey Pre-School Lunchbox and Fix-It. In Fix-It, there is a game where you have to drag certain-shaped pieces of pipes to their matches, and she has always had trouble with it. If she gets stuck I try to go hand-over-hand with her to help her do it correctly. Tonight she got stuck there and said verbally “help Mommy!” Woohoo, two-word phrases!
Day 5: February 16, 2019
Nothing much to report today, though I am finally seeing more and more glimmers of independence. For example, Rory decided when she got dressed after ballet that she wanted to wear her monkey pajama pants. We were going to get Chipotle for lunch (her all-time favorite) and she wanted to come with me, but I told her she couldn’t wear her jammies and needed to put her skirt on. She quickly changed into her skirt with no help. | She is also dancing more in general, and while there have yet to be any huge wow moments at ballet, she is participating more and more and trying more things. | She went to CeeCee and Grampy’s house for a few hours with Collin today and they said she was very affectionate and smiley. With the exception of a few difficult moments (which happens with everyone), today was pretty pleasant with Rory overall. | Owen and I were watching the Letter Factory when Rory came home from her grandparents’ house. As they were going into the A room, Rory saw the door with A on it and said A! I said what does the A say and she said aah. | Our cat Kenny is now “Nenny” which is cute. Green is “neen.” G’s and K’s at the beginning of a word are super hard for her, so while previously she wouldn’t even try them, now she’s at least substituting something she is able to say. | No poop, no accidents.
Day 7: Monday, February 18, 2019
Missed yesterday, whoops! There has been nothing spectacular to report the past two days, but I feel like Rory is stepping into a new level of communication. She is trying so many new words, like when she watches Gemiini now she talks along with it just like you’re supposed to do! I sat in on her speech session today and she popped out with a bunch of new words Nicole and I hadn’t heard her try before. I can’t even keep track of how many words she has now, which is an exciting place to be! She is now saying “please Mommy” and said “sorry Mommy” today. | We had a long weekend, which usually is stress central, but my parents helped divide and conquer the kids over the past three days so we weren’t all home driving each other crazy the whole time. My main goal was to separate Rory and Owen a few times because they get along so much better when they don’t spend all of their time together. (Rory did pretty well at my parents’ house. They said she was affectionate and seems happier now!) Overall, she still has trouble sharing with Owen, but they are getting along a lot better. Of course that means my house is completely destroyed since they are constantly getting into trouble together, but I will take it if that means they are friends. They are currently dumping all of the puzzles out all over the place right now, but good news, Rory is able to sort them out herself now, which is new! | My best indicator of Rory’s behavior is my own mental health. On the days that I feel like I can handle this life, I know she’s doing better than usual, and I have had more of those this week than I am used to. | I feel like Rory’s gross motor skills are improving. She was able to go across the elevated step bridge at the playground yesterday on her own, and tonight at baseball I watched her step up onto the second step of the bleachers, which I could see engaged her core, which is usually not very helpful. She also grabbed ahold of the door handle to Glenn’s truck and pulled herself up onto the step. | Also at the playground, I could see how much she really wanted to play with her little friend Sarah, who is super sweet, but I can tell she just doesn’t know what to do with Rory getting in her space! I am hoping that having her ABA therapists at school will help her learn how to interact with typical kids a bit better.
Day 9: Wednesday, February 20, 2019
Cool snaps from yesterday: I asked Rory what her name is and she answered “Rory.” She has never been able to use it contextually before. She has also started calling Owen “O” which is cute. Getting the unvoiced N sound (nnnn vs. nuh) is going to take a while though! She also said “O night night” when Owen was sleeping in the car. At school they were playing with a parachute and she was saying “wheeee!” and there was a pink ball they were bouncing around on it and Rory said “pink” and “ball” to her teacher. #3 poop, no accidents.
I had noticed a few little coughs yesterday but today Rory woke up with a fever, same little cough and a runny nose. She seemed a little spacey when she first woke up, but you would certainly never know she is sick now. She has been SO giggly since lunchtime and she is just chatting up a storm. We got Chipotle for lunch (which she calls Pokay) and I asked her what she was eating and she looked at her fork and approximated “fork.” I thought that was so cute! And let’s talk about eating with a fork. She has always struggled with utensils and traditionally throws them on the ground and eats with her hands. She ate her whole lunch with a fork today. When we got home from getting the food, she told Glenn “potty” and pooped in the potty! Huge progress on the potty training front these past few weeks with very few accidents. She did wake up with a wet pull-up this morning, which is the first time that has happened in a long time, but I can’t think of the last time she had an actual accident, knock on wood. (#3 poop this morning and #3 before lunch) She is also calling our kitten Kirk now vs. Kirkie…she tends to tack that “ee” sounds on the end of a lot of words, but is getting better about saying them correctly now, e.g. book vs. bookie.
Day 10: Thursday, February 21, 2019
This morning Rory grabbed a Blue’s Clues book and sat in the big chair “reading” it. She said “doggie” and I asked what color doggies she saw on the cover, and she said “pink” and “blue.” Her interest in books is definitely new. | We also had a big day, where Rory spent the morning shadowing at our local Montessori school to see if she’s able to attend school there next year. She did as well as we could possibly have hoped for. Separated from me very well, and while she was sad for a few minutes (literally looked SAD, which is a fairly new emotion for her) she snapped out of it pretty quickly and had a fun morning there. They have an observation window so I stayed for an hour and a half and watched her. One of our friend’s daughters, Sarah, that Rory likes was in the class, so she hung out with her most of the time I was there. She ate her snack, then the teacher helped her wash her plate, which was cool. She really enjoyed the wood cylinder puzzle, and while I was laughing because the teacher showed her how to nicely take them out one by one, line them up in order and then put them back one by one, Rory was more of a bull in a china shop, but she was actually able to get everything put back together with just a little bit of help. She also tagged along with Sarah who was matching 3-D shapes to pictures of 2-D shapes, and Rory matched two of them on her first try, so that was cool! I asked her who she played with and she was able to approximate “Sarah.” (She can also say Sarah’s brother’s name: Luke.) Assuming she is able to make more progress between now and the fall, I think it will be a good fit for her, but we are still debating. | We had lunch at CeeCee’s house after school, which a few days ago, Rory finally got the “s” sound in CeeCee instead of calling her DeeDee, so that was cool! | She had a good day at therapy, and in the waiting room before we went in, she verbally said “Mikey” (her friend, which she’s had for a while), “Ellie” (one of her friends), “Katie” (one of the therapists), and “Nammie” (for Tammie, her OT). It is so exciting for me when people “get names” from Rory! | She fell asleep on the way home and had a nice long nap. Since she woke up, she has been the most pleasant she has been since I can remember. She’s been happy, sweet, and generally not making me crazy. | After dinner she brought over the box all of our counting monkeys go in, then said O, meaning she wanted Owen to help her find them. I told them to go look for monkeys and they did. She brought back red, yellow and blue and I asked her what colors they were and she told me. She pointed at the box at the green one and said “neen” (her new word for green because g’s are hard!), so I told her to go find the green monkeys. I helped her, and she found each one and told me what color it was. I just can’t get over how much more talkative she is lately. While it’s still not conversational, it gets closer every day. | At one point she told me she needed to go potty, so I took her potty and she pooped! It amazes me that now that her gut is under control, potty training has clicked with her. #3 poop in the potty this morning, #3 poop in the potty this afternoon, no accidents.
Day 13: Sunday, February 24, 2019
Well it’s not all sunshine and rainbows with Rory. While Thursday was the best day she has had in ages, Friday and Saturday were pretty rough. She’s been pretty ornery in general, easily set off (which has been increasingly difficult because sweet, darling Owen has suddenly decided to BE a toddler and has been fighting me on everything and super prone to meltdowns, which is NOT good for Rory) and making me question my sanity. This morning she was the last one up and instead of telling me she needed to go potty (I usually just get her up and take her right there myself), she pooped in her pull-up and it was #2, so the worst it’s been in a while. As with most of her trends, good poop = good behavior, bad poop = bad behavior, so this does make sense, but I’m not sure what caused it since she has had two months of good poop with the CBD oil. She did miss ONE dose on Thursday (while she was having such a great day) so could that be it? Did she sneak something bad to eat? Will have to see if we get over this in the coming days. | We had our first baseball game for the big boys on Saturday and between the two toddler terrors, we didn’t last too long. If it had just been Rory, or just been Owen, I think we would have been fine, but as with most things in our life these days, putting the two of them together just equals HARD! Hoping we can get over this and have a good season where I am not going crazy. | We went to run errands with the littles and left the bigs with my parents. Rory was SO excited to see CeeCee when we got back, she ran in and jumped into her lap. It has been heartwarming to see just how much their relationship has grown since we started stem cells. | Sunday has been so-so, not awful, but not great. I feel like we are still seeing progress, but not sure whether we are really seeing gains from the 3rd SCT or if they are leftover from the 2nd??
Day 14: Tuesday, February 26, 2019
The past two days have been a mixed bag. We have had ROUGH mornings, with Rory and Owen literally screaming hysterically both days and me wondering if we were going to survive! But generally speaking once we’ve gotten out of the house we’ve had pretty good days. After therapy today Rory was so chatty and very sweet. We did a million puzzles, and she verbally said “blue puzzie” for the puzzle in a blue box, and also “eat snack” and “Lulu meow.” Our internet was down today, so since we cut the cord that meant we had no TV all afternoon either. She asked to watch monkeys (jumping on the bed) and I told her as long as Alexa was yellow, it was broken, and we had to wait until it was blue. She repeated yellow and blue back several times to me and seemed to understand the concept. | While I was cooking dinner, she was playing with the kittens with Glenn, who said they were getting too big, and she repeated “big” verbally. Then we said small and she repeated “small” verbally. | I have also decided that the biggest notable gain so far with stem cells is everyone finally getting names. I mentioned some a few days ago. Today she got (E)mmanuel at school; Laila, a friend from her 2 year old class; she had tried to say Sarah for one of her friends last week, but DEFINITELY got Sarah for one of her friend’s moms at school today. | No poop today, #2 poop in her pull-up yesterday morning. Ready to get that back on track! No accidents though. | I started giving Rory Behavior Balance DMG supplement on 2/26 in the evening. This has helped one of our friends with a similar genetic issue with speech, so we wanted to give it a shot. His mom suspects that it might not work as well right after cells, so no high hopes, but we will try it for a few weeks, then if there is nothing cool, discontinue until we are further away from cells and need some extra support.
Day 16: Thursday, February 28, 2019
Nothing terribly exciting to report the past two days. We are definitely getting more verbalizations, but it’s slow, steady progress. Like when I picked Rory up from ABA on Wednesday, she was pulling scarves out of a drawer and saying each color excitedly (except orange, lol) which isn’t something she would EVER do before. | Nicole is working with her on CVCV words with different consonants and vowels (like tuba and poodle) and finally getting her to say some. I have noticed that we are finally at the point that we can start to see consistent errors with her speech and start to troubleshoot them, whereas for the first year of her apraxia diagnosis, it was literally just trying to get her to say ANYTHING. It is really like a puzzle, and I am so grateful we have our SLP Nicole on our team to help piece everything together for us. | Behavior has been overall good with a bit too much screaming periodically. This morning Owen slept late so it was less contentious without him to deal with, which was nice. She has been less aggressive with Owen and more playful. Still has a lot of trouble sharing though, sheesh. We are headed to baseball soon, which was pretty awful on Saturday, so we will see how that goes. | #3/#1 poop in the potty this morning (WEIRD!) and #2 poop in the potty yesterday. No accidents.
Day 18: Saturday, March 2, 2019
Rory’s behavior has been overall good with some super bad, awful moments. Our mornings are always hard, and car rides are getting more impossible. Lots of screaming between Rory and Owen and they set each other off, so it’s an awful vicious cycle that I don’t know how to break. Baseball has also been challenging. They are good for a little while but soon lose patience and are both prone to meltdowns. I imagine this is what it’s like to have twin toddlers! Today was CeeCee’s birthday and Rory was happy to play with the “blue monkey” that she named “blue” that CeeCee brought her. I also got her to repeat “happy” and “day” and she told us that “Nenny (Kenny, our cat) meow.” Ballet was good today too. She is finally starting to try more things, imitate more, and as always, she just loves it. I think that is her happiest time of the week, and it’s hard NOT to smile watching them! Poop is consistently part #3/part #1 the past few days. Still no accidents though and she’s been waking up dry every day. She’s also started wanting to sit on the big potty instead of her little potty sometimes, so that’s progress. Oh, a big one from speech yesterday. Nicole has been working on “put in” for a while now without much success because she wants to say “put-y” and “in-nuh” but yesterday she said “put in” perfectly, with perfect tongue placement too, which is totally unusual. Overall she has been chattier in her speech therapy and wanting to focus more on speech versus language with her AAC, which before was very much reversed.
Day 19: Sunday, March 3, 2019
I am feeling so mad today and having a really hard time getting over it. Our morning was reasonably ok. Glenn took Owen to get down for a nap after lunch and Rory and I were hanging out while the big boys went outside to play with our neighbor Jack. We did some puzzles and then Rory realized the boys were playing outside. “Jack,” she said. “Outside Rory” she said on her talker. Well guess what? She bit Jack a few months ago (in addition to generally being jerky to him) and Jack wants nothing to do with Rory. Not to mention she can’t be trusted to go play outside because she has no boundaries. I told her to get her shoes and I would take her outside. She didn’t want to and got mad, so I started on one of my must-do tasks for the day while she had a meltdown about her shoes: undecorating the Christmas tree. Because yes, on March 3, our small, fake Christmas tree was still up and half decorated. She finally went and got her shoes while I ignored her and she attempted to get them on. She got one on, but on the wrong foot, then couldn’t get the other one on. So she ripped the one off and threw them at me. And cried. And screamed. And scratched me as I continued undecorating the tree. So I took her to the bathroom, still screaming (since she tends to have accidents when she is losing her mind), and she proceeded to pee like a rocket, all over the bathroom floor. I yelled, I sent her to her room (nope, I’m still not perfect), and I cleaned up the mess. And then I came out to continue cleaning up Christmas while she continued to be mad and I continued to be mad. I told Rory it’s ok to be mad, that I’m mad too at how hard everything is. Something as simple as going outside to play with her brothers shouldn’t be hard. Something as simple as getting shoes on shouldn’t be an impossible task. I’m so sick and tired of everything being so hard. I just want something for this little girl to be easy instead of having to fight every day for everything. And god, I need a vacation from her, because in case you didn’t know, this special needs parents gig is HARD. But I don’t get a vacation, not from Rory, not in general, because even going on family vacation seems so impossibly hard right now and so expensive when we should be spending our money on more important things. And I look around and see all of my friends with these beautiful, easy lives and these easy, typical kids. And don’t get me wrong, I am HAPPY for them and I love seeing their beautiful, easy lives. And I know they have challenges too. And I know I should be grateful for the things that ARE easy for us, and I am grateful for those. But while most days I can look on the bright side and be Pollyanna and research and fight and maintain my sanity…well, today is just not one of them. So that’s my update for the day. I’m mad. And yes, Rory is still making these tiny little gains I’ve been documenting since last June, but I am just so ready for big gains and I’m doubting if they are ever going to happen.
Day 22: Wednesday, March 6, 2019
Don’t worry, I am definitely in a better frame of mind these past few days after my last post. Usually with the lowest of lows and the saddest of sads, there is a rainbow after the storm. Rory’s behavior has been mostly better (with the exception of a few full-on crazy meltdowns), and she has been continuing on with some great speech gains. Specifically today she just said, clear as day, “Whitney” and “Charlie,” for two of our dear friends and neighbors at the baseball game (her boyfriend Connor is still “Nonner” but he was impressed at how well she was saying “hi” and “bye” and “Daddy” since we saw him a few weeks ago). Rory and Owen have also finally started to enjoy reading bedtime stories, which she hasn’t let me do since she was little bitty. Goodnight Moon is our favorite, and she will try to fill in the blanks for me, which is so cute. She says “night night” quite a bit, “moo” for the cow and “hucky” for the quiet old lady who was whispering hush. She was also filling in the blanks for monkeys jumping on the bed at speech the other day. And she said “ready” and getting really good with “on” and “in.” Her favorite pink bear’s name is Strawberry, and while she usually calls her “pink” she actually said “strawbry” the other day. Oh, and she fell and hit her head on the nightstand last night and cried hysterically about it…not that I’m happy she was hurt, but how amazing that she is feeling pain now because before she didn’t at all. So many other good ones too, I just need to be better at recording them. There have been a lot of awesome random utterances with wide-eyed glances between me and whoever else is with me, and a lot of “thank you stem cells” coming out of my mouth.
Day 24: Friday, March 8, 2019
As I’ve mentioned before, Rory’s behavior has been so much better overall since her last cells. She’s been nicer and less aggressive to Owen, which is SUCH a welcome change. But OMG, the sporadic meltdowns she’s been having have been intense! Today she woke Owen up from his nap, and he is always crabby when he gets woken up. He cried, which set her off. She was hysterical! When that happens I have to separate the two of them, because Owen’s crying makes Rory scream and Rory’s screaming makes Owen cry. So I sent her to her room where she got so hysterical she almost threw up twice. I did have the common sense to take her potty in the middle of the meltdown, so she thankfully didn’t have an accident (she has had two accidents the past few days after WEEKS of none…one during a meltdown and one just randomly…so worth noting). She finally settled down and I let her come back out to the living room, and she has been mostly fine the rest of the day. Actually as I type this she is sound asleep next to me wearing her new bathing suit that she was so excited to try on and refused to take off. She said, “yellow” and “pink” and “nun” for sun, pointing at the swimsuit. | Also the quiet old lady in Goodnight Moon is now saying “hush” instead of “hucky” like a few days ago. I love how much she is enjoying being read to now! HUGE gain! | She also had pretty rough behavior at baseball last night. No desire to sit in the stands and watch the game and kept shrieking. We were about to leave when we ran into our friends who got some toys out of their van and we parked the kids on a blanket between the fields where they played with toys, threw “Florida fall” leaves around at each other, and had a great time for another hour. My friend Kristen is now one of Rory’s favorite people, and she totally monopolized her last night! Wanted nothing to do with me, but Kristen kept her happy, so I am grateful for good friends who humor my kids. | I swear I already wrote this, but ABA therapy has noticed how much more verbal Rory has been lately. They used to track her “mands” (when she asks for something) by what she requests on her talker, and they wrote each one out individually. Wednesday she manded for so many things that they just started counting with a clicker instead of writing them down, and today they noted that 14 out of the 50 or so she made were verbal versus with her talker. They’ve also noticed that she’s been much more interested in playing with the other kids at school and making more of an effort to play with them. And she’s been doing really well with her programs at ABA, too. They are the only therapists who don’t know about her stem cells, so I especially enjoy hearing how well she is doing from them.
Day 29: Wednesday, March 14, 2019
The most notable note from the past few days is that we survived our first vacation as a family of six! We have been terrified to try going anywhere (our last family vacation was pre-Owen, and the only other time we’ve traveled was that first trip to Oklahoma for stem cells round 1), but we finally decided it was time to suck it up and try. We wanted to take the boys to Kennedy Space Center, so we got a hotel room on Cocoa Beach, stayed there overnight and went to the beach on our first day, then went to the space center and drove home on our second day. The hotel and beach actually went pretty well! Rory was super excited to stay in our hotel room and to go to the beach, which despite living about two minutes from the Gulf of Mexico, we never go, so it was a novelty and she was totally psyched. She said “beach” and was excited to wear her “pink” and “yellow” new bathing suit. The space center, like Disney World last year, definitely kicked our butts. Rory got overstimulated quite a bit and just lost her cool. When we were going into the Atlantis exhibit (where you get to see the actual Atlantis space shuttle) she was hangry, and after eating a ton of snacks during the video, she STILL wouldn’t stop fussing, whining and crying through the whole exhibit, which made it hard for any of us to enjoy it. After that, we really debated whether it was a smart idea to go on the bus tour, because we could imagine being trapped on a bus for 45 minutes with an entire busload of people and a screaming Rory, but she was excited for “bussy” so we decided to go for it. She was actually a perfect angel the whole time, phew! But then we got to the Saturn exhibit where they herded us into a big, dark room to watch a very loud movie. Rory saw some kids in the rental strollers and decided that SHE wanted a rental stroller, and that’s where I lost her. She went downhill quickly, making quite a racket. I tried to calm her down but she was totally spiraling. Now side note on KSC, finding an employee when you need one is nearly impossible. There were literally no employees in the room where we were watching the movie. I went to where we came in and looked for someone (with Rory screaming), but no one was there. Then I found the exit, but it went outside behind the building so I shut the door and came back in (with Rory screaming) and the two of us sat in the front of the theater (which was thankfully dark, loud, and had huge screens up high that everyone was watching), feeling extremely trapped and vulnerable. Finally someone else came over to exit to leave, so we followed them out and walked back around the building to where we had entered. I asked the employee outside (that’s where she was hiding!) if I could take one of the free rental strollers and she said yes, and she directed me around the other side of the building through the gift shop and back inside to where the giant Saturn 5 rocket was displayed. Now I assumed by the time all of this transpired that my family would already be there and I started panicking when I realized that my cell phone was almost dead and I had no idea where they were. Like, total panic attack. But considering you had to take a bus to get back to the space center, I realized they wouldn’t leave without us, and I finally found another of those sporadic employees and figured out where they would be exiting from the second movie. Rory was literally FINE the second she got in that darn stroller, and finally we found our boys and enjoyed the rest of the day. I had really hoped that vacation would be easier post stem cells, but we’re still not quite there yet, though I suspect part of it was just going with four kids nine and under in general! Maybe next year! We kept Rory in a pull-up for most of the vacation because we didn’t quite trust her potty training prowess enough yet. She didn’t stay dry on the long car ride there or overnight in the hotel, but otherwise she did great (even at the space center), which is big progress, and didn’t seem confused by wearing a pull-up, she still knew to go potty. She even pooped on the big potty at the hotel. Go Rory!
Day 32: Saturday, March 16, 2019
So when we were at the space center we brought in a ton of cut up fruit and veggies, Larabars, etc. but at lunchtime I wanted to get the little kiddos something extra to eat. I couldn’t find any allergy information beyond gluten on their menu, so I ordered a salad with grilled chicken and hoped it was safe for them. But I’m guessing the chicken had soy in it (seriously people, stop putting soy in your darn chicken!), because Rory’s behavior since eating it, along with her poop, has been dicey. Therapy was not great the past few days (she actually had a poop accident at ABA yesterday, first poop accident in ages, and it was not a good poop), and she was more challenging than usual at home. But thankfully this morning her poop was back to #3 in the potty and her behavior was generally better (aside from our trip to the mall to take Glenn’s Surface into the Microsoft store to get fixed…it was loud, too many people, and she gets wigged out by mannequins, so she was freaking awful the whole time). Hopefully we are back on track. I will say that generally Rory has been so much chattier these past few weeks that I’ve been awful about tracking things. She is so good with colors now and will even talk along with the Little Baby Bum color video she loves to watch saying each color as it comes up on the screen. She will also say the characters’ names from Yo Gabba Gabba when we read the book she found on our book shelf (so she’ll say Muno, Brobee, Toodee, Pexy (Plex) and clumsily attempt Foofa, and even repeat Yo, Gabba and Gabba one word at a time after me). She has developed attachments to her pink bear (whose name is Strawberry, but Rory just calls her Pink) and to our Knuffle Bunny books and stuffed bunny…she calls him Munny. Each has gotten to go to therapy with her, and it’s sweet to see her actually enjoying her stuffed animals, considering she never even acknowledged them before! So at just over a month past her last stem cells, we have seen slow, steady gains. Not as much wow as before, but I can’t even try to count her words anymore since she is constantly trying new words. When she is in the right mood, she will pretty much try anything now. And even when she’s in a bad mood at therapy, she is still working and making progress there. We are starting to plan round 4 now…it will be a cord blood round, so either 3cc of Invitrx in Atlanta or 2cc of Stemell here in Largo, just down the road. I was learning this morning about CD14 and how great it can be for brain repair per Dr. Kurtzberg, the amazing doctor leading the Duke stem cell studies, and Stemell is the only US lab with high CD14 counts. So I will continue to research and think more about it.
Day 33: Sunday, March 17, 2019
Behavior was ROUGH this morning, as Rory and Owen both woke up on the wrong side of the bed, both melted down, and were screaming their heads off at each other. Behavior thankfully improved, but MAN! | There are SO many more words coming out of Rory’s mouth now, it’s truly amazing to hear. Examples today that were clear as day: mermaid and Bandaid. CeeCee and Grampy also noticed how chatty she was when they watched the kids for us today. | Owen was crying about something with Glenn and Rory brought me her talker and said “Owen sad” then “bathy water time” (what we call bath time, and yes, it has its own button on her talker!) because she wanted to go have a bath. I love that she was able to recognize and express Owen’s emotions. | Rory is most definitely a Grey’s Anatomy fan and has started repeating the characters’ names when we are watching it. Glenn was watching Station 54, the spinoff show, and the character Bailey crosses over between them. She saw her and said “Bailey!” I feel like that is definitely a next step in recognizing a character, remembering the name, remembering how to SAY the name, and using it appropriately. #2.5 poop in the potty this morning, no accidents, but wet pull-up this morning.
Day 37: Thurday, March 21, 2019
I have been SO bad about blogging this time. We have just been so busy. The past few days have been a huge mixed bag. Behavior was super rough for a few days there (and she has had awful poop the past two mornings) but today she was mostly lovely. Yesterday was the full moon, so I wonder if all of the crazy screaming that happened every time we got in the car had anything to do with that?? Total torture and we are in the car a LOT, especially on Wednesday and Friday. | I have been learning about free glutamate (it’s not just MSG, it literally has hundreds of other names) and how awful it is, so I am trying to gradually trim that out of her diet, starting this week with Chick Fil A grilled nuggets, one of her favorite things in the world. I thought she would be madder than she was (she usually asks for it with her talker as soon as I pick her up from school on Tuesdays and Thursdays since we always get it between school and therapy) but she didn’t seem to notice. So lunch Tuesday-Friday is a crap-ton of fruits and veggies, and I’m hoping she doesn’t wither away to nothing! | My new favorite Rory word is “nope!” which sounds more like “nup” but she uses it so appropriately and while it does get annoying since we hear it a million times a day, it still usually makes me giggle! | It amazes me how much more effectively her mouth seems to be working. She’s making new expressions, pursing her lips, and just feeling out what her mouth can do. She is also resisting her talker more. She doesn’t want to wear it at school anymore, and rarely uses it at home unless she is having trouble communicating something she really wants. I feel much more equipped to communicate with her now, even without that crutch. | She is also super into books now and Knuffle Bunny and Knuffle Bunny Free (I have no clue where the second one is!) are super big hits. She can say bunny (it usually comes out money), Trixie, Daddy, Mommy, book, and is just so INTERESTED in them, it blows my mind. She also loves “CeeCee and Grampy” (what we call Trixie’s Oma and Opa) and the “pink” bunny they get Trixie. This kid has refused to even open a book with me for years now. And now she’s literally carrying them around with her, begging for me to read them over and over again, and bonding with the Knuffle Bunny plush we have too! | Today I was cooking dinner and she came into the kitchen and shut the sliding door, which she was having trouble opening. She came over to me, grabbed my hand and say “help help help” and took me over to the door to open it. Kiddo has never asked me for help before! So that was a BIG one! Just now she was working on a puzzle when I was typing this and she couldn’t open the latch on the metal lunchbox the puzzle goes inside, so she asked for “help” (it’s more hep, but close enough!) so I would open it. | She will repeat ALMOST anything I ask her to now, which is SO HUGE. She actually just brought me the space puzzle and said “space” without any prompting. WOW!
Day 39: Saturday, March 23, 2019
Ugh, today was rough. Ballet was wonderful, but Carter’s baseball game was awful. Rory had a meltdown and was literally screaming at the top of her lungs in the very echoey bathroom and then all the way back to the field. I dragged her screaming all the way back to our car and we were both just SO frustrated! She calmed down pretty quickly once we got home, which seems to be more of a trend lately. She is not doing well when we are out doing things, but does do reasonably well at home. Our friend Julie and her son Aiden came over to visit on their way back out of town to head home to Arkansas, and thankfully they came with us to our neighborhood Spring Fling because it would have been even harder to keep tabs on the crazies without her help! Owen was at the bubble table almost the entire time and was super awesome at blowing bubbles, but Rory was overstimulated and either trying to break the printer in the photo booth, or trying to destroy everything on the bubble table, or get food she wasn’t allowed to eat. Not much peace and relaxation, which it rarely is at our neighborhood parties, but today Glenn was at Carter’s second baseball game, so I couldn’t dump her off when she got stressful like I usually do. We survived though, and she has been reasonably happy since we got home. Julie hadn’t seen her since the summer (right after her first SCT) and was amazed at how much more she is talking now. She really rarely stops chattering now…not actual cohesive conversation, but just SO many words coming out of her mouth. But it has been a hard few days for Rory…seems like she is going through something and has just been more overstimulated than usual. Had rough sessions at ABA and speech yesterday too. Maybe I will try adding that DMG supplement back in to see if that helps cool her system down a bit. Poop has been better though, #3 yesterday and #2 today.
Day 42: Tuesday, March 26, 2019
I did add the DMG supplement back in, and I think it has maybe helped a bit? The other thing that occurred to me as I woke up sick with a cold and sore throat on Sunday, that maybe Rory had a sore throat when her behavior was so rough Friday and Saturday, but since she couldn’t tell me, she just acted out. Gosh, I wish my kid could tell me when she isn’t feeling good! She had no visible symptoms, so sometimes it’s so hard to tell! | A huge gain that we’ve noticed recently is Rory’s ability to use final consonants on the ends of words, where before she would stick a k, g or y sound on the end of everything, now she is appropriately using other consonants too. She can also repeat multiple word sentences after me…still one word at a time, but with proper articulation and you can understand what she is saying, for example, one word at a time, “Kirk is in pink bath tub.” And, “I eat yellow bar please Mommy.” She is nowhere near being able to make these sentences on her own, but she is so far past where we started last June that I am more and more confident she will get there. | She can also answer basic questions when she is familiar with the subject matter, like answering what color the Yo Gabba Gabba characters are, or telling me who characters in books are when I ask, like Trixie, Daddy and Mommy from Knuffle Bunny. She LOVES books now, a gain I just can’t get over because she was literally NOT interested in them before cells, and actually would get mad at me if I dared try to read to her. It made me extremely sad that I used to read bedtime stories every night to Carter and Collin, but wasn’t able to do that with Rory and Owen, and now we DO, every single night! It really hit me the other night as I was reading to them how precious of a gain this truly is. | Essentially Rory’s gains are proving to be more subtle than the last round, but really, how can you top gaining expressive language?? Anything else pales in comparison to that gain we got after her second round. We would love for her to be more conversational and to be able to initiate more actual speech with us, but she is slowly but surely getting there. Just being willing to repeat things, try new words, and having a constant barrage of words coming out of her mouth is a huge, NEW thing for Rory. | Other fun new words…Hulu, hospital (wanting to watch Grey’s Anatomy again…and I can’t get her to repeat it today but she said it three times in a row yesterday!), Owie! (which we have been working on Owie or Owen for.ever.), piece (like piece of a puzzle), cheese! (taking pictures, and saying it along with the characters at the end of the Get the Sillies Out song on our Yo Gabba Gabba CD) and home. | Poop has been back to #3 the past few days. She did have a pee accident today when she got mad, which is rare these days. | O.M.G. I just got a new bone broth protein shake for Carter to try (because the boy is SKINNY!) and he didn’t like it. Since it’s the vanilla flavor of the same chocolate one I give to Rory and Owen, I poured it into two cups and handed them to my toddler terrors. Owen took one sip, declared it yucky and then proceeded to spill the rest of it. Rory proceeded to guzzle her whole cup. As I was cleaning up Owen’s mess I realized I made it WITH MILK! Like cow’s milk! Which Rory hasn’t had since December 2017! Should be an interesting few days.
Day 43: Wednesday, March 27, 2019
Good day today! Aside from a poop accident this morning when we got to therapy (#2) which may or may not have been related to the milk incident last night, Rory didn’t seem to be feeling sick from my mistake, which is what I was worried about. I’m guessing the worst is yet to come though, wah! She had a great day in ABA, and of her 56 mands (requests) for things, she was able to make a verbal attempt nearly every time and only had to use her device a few times. She really is talking so much more these days! She is also learning the days of the week and got an 80% on that program, in which they are putting out three days in an array (just the words) and she has to pick the one they tell her to identify. She really is starting to recognize letters now, which tells me that my baby WILL learn to read. She got her best score, 90, on the verbal imitation program they are running, too. She also had a great day in speech. Behavior has been pretty decent, too. | On the way home today, Rory kept saying “home!” So cute. | At dinner tonight, Rory didn’t finish her turkey. Me: “Rory, are you going to finish your turkey?” Rory: “No. Bubba. (pushes her plate and gestures toward Owen) Cookie.” So she answered my question with a full, complete thought! | Owen hurt his foot, and a tradition I’ve had with all of the boys is when they hurt something, I kiss it, even if it’s their stinky foot. I make a huge production of it, make funny faces and sounds, and they have all thought it was hysterical. So I kissed his stinky foot, and he kept laughing and saying “more” adorably, so I would kiss it again, and so on. Rory, who has never been able to tell me when she is hurt, joined in and said “more” too and I kissed her foot and she laughed too! I also tickled and kissed her tummy and she just thought it was so funny!
Day 45: Friday, March 29, 2019
This is a big one. Rory has never cared about any of her toys but she has recently developed a major love for her stuffed animals. Today she insisted on bringing Pink (bear), Neen (green bunny), Monkey and Doggie with her in the car. I made her pick only ONE to bring with her to therapy (Pink won) and she actually didn’t have a meltdown about it. And when I asked her to say cheese to take a picture she said “cheese!” We had the least awful morning in recent days too (only a few scream versus a lot), but therapy was a bit rough. Rachel was out today, so while she had a great first hour with Dru, she gave Monica a hard time during her LEAST favorite program, where she has to draw lines, circles, and squiggles, and she had a 15 minute-long meltdown and even bit Monica, sheesh! She hasn’t bitten anyone in ages, so she must have been really mad. Plus she had two pee accidents at therapy. I’m just going to chalk it up to being off her routine?? She’s been good this afternoon, too, and despite waaaaay more potty accidents since the milk incident than she has had in months, she seems to be getting back on track this afternoon and has peed in the potty twice since we’ve been home. New words: happy! and shark (the baby shark craze seems to be hitting here!).
Day 48: Monday, April 1, 2019
Saturday kicked my butt a bit, though I can’t even remember any specifics about it, but my lovely friend Sara brought me some activated charcoal on Saturday night to help with any remnants of the milk incident, and that seems to be just what Rory needed. She ate black goo with no hesitation and asked for “black” on Sunday morning too, despite the fact that she has fought me tooth and nail twice a day every day lately when it was time for supplements. So I think that helped a lot, and she was much more bearable and also didn’t have any more potty accidents yesterday, or today either. Hopefully we are back on track. Important to note, that while behavior was awful and potty accidents were plentiful, that her speech didn’t regress and she kept having speech gains during this incident. And while poop has been awful since Wednesday morning, it was back to being #3 this morning, and in the potty. | Yesterday I cut up some pineapple chunks for Rory, which she can’t say yet, but she can say yellow. She came to me and said “yellow mommy please!” all together and all on her own without any prompting! Girlfriend got a plate full of pineapple! | She also has gotten super good at naming things, in addition to being obsessed with her stuffed animals. I took a video of her last night with her naming her whole posse of animals: black (bear), munny (Knuffle Bunny), monkey, pink (bear), Muno, Mitzi (my old teddy bear, whom I hadn’t mentioned to Rory in ages and she just popped out with the name on her own yesterday!), Betty, and then Owbie (Owen) and (of herself) me! | I’ve been reading through my original SCT journal from the 3 months following her 1st SCT and it’s truly amazing how far she has come since then.
Day 53: Friday, April 5, 2019
This week has been kind of a blur. Baseball is in full swing and we are just busy. Life is a giant hamster wheel of driving kids to and from school and therapy, going to the grocery store (a lot), chasing toddlers around the baseball fields, and doing lots of puzzles! Rory has been overall in a pretty decent mood, but I feel like her meltdowns have become far more extreme lately. I can see them start to happen, and usually there’s nothing I can do to make them stop aside from ride them out. For example, on Wednesday, Glenn and Collin had just left for baseball. I don’t even know what set her off, but she started with the “no, no, no’s” and I could see it intensifying by the second. I made Carter take Owen into his room to play since Rory and Owen can feed off of each other like no one’s business. I tried talking to Rory to figure out what she was upset about (when she gets frustrated she can’t verbalize and wants nothing to do with her talker) but nothing, and now she was screaming, I tried ignoring her and just tidying up the room while she followed me around screaming. I yelled (because let’s be honest, I sometimes have meltdowns too) but that obviously didn’t help. I put her in her room for a few minutes. Nothing. I finally said “hey, I’m hungry, do you want some grapes?” “NOOOOOO!” So I got some grapes and started eating them, and she grabbed a few and ate them. Then went to the fridge and said “yellow” which is what she is calling pineapple right now. I got her some pineapple, and she finally settled down. So she was hungry! Wish it was easier to troubleshoot her, but at least we are starting to get there. | Generally Rory’s speech is growing every day now. She brought me the cardboard clock CeeCee made for her today and said “circle”!! We were watching a video of Owen from last year this morning and her said “strawberry” and she said “strawberry.” He said “apple” and she said “apple.” There is still so much I don’t think she is ABLE to say yet, but if she CAN say it, she will at this point. Her mouth seems to be working better. Whereas before she barely moved it and couldn’t make any lip rounding sounds, she now purses her little lips and really annunciates (e.g. Muuunooo from Yo Gabba Gabba). | I think I mentioned that in ABA they are focusing more on verbalization versus using her talker, which I think is great…it’s not even something I asked them to do, and I haven’t told them about stem cells, so it’s cool to me that they are noticing this new explosion of speech at the same time we are. Even in school she is verbally asking for toys from friends and interacting more with her classmates. They’re keeping her talker accessible, but not focusing on it anymore and really encouraging her to speak to get what she wants and needs. | I have noticed that often if Rory is agitated at home and I’m debating whether to take her somewhere like baseball, she generally does way better than I expect when we’re out. And sometimes when we are out and she’s having a meltdown, she really just wants to go home. Change of scenery is much more effective now than it used to be. And we survived two baseball games in a row this week until the end. Thankfully I have some very sweet (grownup) friends at baseball who know and love Rory and are willing to let her grab their hands and let her lead them around (she tells me bye bye and walks off with friends frequently now). She still struggles playing with typical kids, but she is at least interested in them now, just have to get THEM interested in HER which is still hard at this point. Rory really wanted our friend Nicole to take her home with her on Wednesday and I got her to repeat one word at a time “go home with Nic!” She also loves babies, I think because there is no pressure for her to keep up with them verbally. Baby Sophie is one of her favorites!
Day 55: Sunday, April 7, 2019
As lazy weekends go, this one was pretty decent. Rory had ballet yesterday morning, which of course she loves always. They put jingle bells on their wrists, which she would normally freak out about, but she left them on and even shook them! | Last night when it was time to get ready for bed, Rory lost it, just out of nowhere. She was absolutely hysterical, which in turn made Owen hysterical. Glenn and I decided to divide and conquer, so he took Rory in the living room and I took Owen in the bedroom. She continued to be hysterical, so we switched, and then Owen was hysterical, so we switched again, and then Rory was hysterical. They were DELIGHTFUL! Finally I went out to get her and brought them in the bedroom to read books, at which point they both settled down and were fine. Turns out they have gotten so used to that routine now that when we didn’t do it, it was the end of the world. Once we read our three books they settled down and Rory fell right asleep and Owen, well he was awake forever, but at least he wasn’t crazy! | In the poop department it has been a dicey few days. Rory has been back to #1 poop, has had several accidents, and while I assumed it was food-related, I’m wondering now if she has a little tummy virus. I don’t think she is feeling sick (no pukes, no fever) and hasn’t slowed down at all, but I’m ready to go back to our new normal again! She’s been back in a Pull-up after those accidents, and I just want to get back on track again! She is saying “poopy” now, lol. | When we got in the car after ABA on Friday, she said “bye baby” to her friend’s sister, and then “eat cookie” and just now she said “pengy (penguin) night night” to our Christmas penguin decoration that’s up in the closet, and “Lulu black” when she was petting our kitten. There are many more examples in between, but generally a lot more two words put together on her own, and she will do full 8+ word sentences one at a time after me now. I hope that I am helping her “program” sentences into her brain now so she understands how they work.
Day 56: Monday, April 8, 2019
A couple of huge ones today. We have been working with Rory on her alphabet, and today I got her on camera saying the whole darn thing (minus W, but hey, that’s a HARD one!) repeating them one at a time after me. Then Glenn took her to the grocery store this evening and a lady asked her what her name was, and she answered Rory. She asked how old she was and she answered four! Verbally! She was quiet and the lady couldn’t hear her well, but Glenn did. She had finally gotten to the point after her first round that she could answer those questions on her talker, but being able to answer questions verbally is amazing!! | She is also putting two words together more. She walked into speech today and told Nicole “monkey home” because she left her monkey stuffed animal at home. She also told me “Mommy help Muno” when she wanted me to get her Muno stuffed animal down for her from the closet. | She’s loving Trolls again too, which is one of my favorite kid movies that we used to watch literally multiple times every day when she was two. She loves “Poppy” and “Branch” and dances along with them. | Overall great day aside from awful #1 poop this morning, a meltdown in OT and some obnoxious whistle screeching in the car on the way home from speech, oh, and she was completely overstimulated when we went to CeeCee’s for lunch, but not awful, just hyper. But otherwise she has been happy, extremely talkative, and just making huge leaps with her expressive speech all day. As I type this she has her Knuffle Bunny book and she is sitting in my lap “reading” it to me. Time to get these monkeys into bed!
Day 59: Thursday, April 11, 2019
As we were walking out of school today following one of Rory’s friends, she said, clear as day “Emma.” And sure enough, it was Emma! I shrieked in excitement and told Emma’s mom that Rory just said her name. And while she knows Rory has special needs, I don’t think she quite got the enormity of Rory telling me something all on her own. This is the second time Rory has told me a friend’s name at school. | Rory has had some sort of gut issues going on for a while now. We took Tuesday off of therapy and school after she had a particularly awful accident on Tuesday morning, but she has been feeling and acting perfectly normal otherwise and we got back to life again on Wednesday. She also got a piece of one of the boys’ breakfast biscuits on Tuesday, so I think today’s issues were brought to us by the evil gluten monster. Hopefully in a few more days she will get back to good poop again, because this is so disheartening. 🙁 The good news is no verbal setbacks with any of it, despite having awful poop and accidents the past few days. I have given her activated charcoal the past two days to hopefully help mop up the gluten in her system. She had a great day in OT and PT today and Glenn noticed that the last time I’d pointed that out, she’d had activated charcoal the night before, too. Coincidence? Quite possibly. But worth noting. Aside from a few really delightful meltdowns, Rory’s behavior has been pretty good the past few days. She has been snugglier and sweeter with me, reasonably nice to Owen, and pretty agreeable if she’s had her CBD oil. When she starts getting irritable it’s usually because she’s due for another dose and she settles within a few minutes of getting it every time. | Oh, another cool exchange Wednesday, I brought her lunch when I picked her up from ABA and put her lunch box on the seat next to her so she could grab what she wanted. She dropped her pink Larabar, and got very upset about it. “Pink! Pink!” “Oh, did you drop your pink Larabar?” “Drop!!” So I pulled over and got out to get it for her, and I realized it wasn’t open. “Do you want me to open it for you?” “Open!” It was a whole exchange! Of course she proceeded to throw it on the ground after eating only one bite, but WOO HOO for progress!
Day 62: Sunday, April 14, 2019
I already wrote a post below about the past few days but we have had some MAJOR cool speech gains today that I wanted to record first: I made allergy-safe cookies to take to Rory’s friend Emmanuel’s (who she is calling Muno, lol) party today, and she has been saying Muno, play, party and cookie relentlessly–one at a time–for the past hour. She just sat ask asked “cookie cookie cookie” forever and I told her if she said a sentence I would get her one. I said tell me “I want cookie” and hot damn, she said “I want cookie.” I cheered like a loon and got her a cookie! | Also, earlier she spontaneously told me “puzzie (puzzle) mermaid do!” Then when we sat down to do the puzzle she said “help mommy.” | Also, the boys were going outside to play with our neighbor Jack and she said “play Jack me.” | So we’ve had three three-word sentences in the past few hours. WOO HOOOOO!
Friday Rory had a great session in ABA. They have been tracking her independent and shaped verbal mands, and her independent was in the 30s. She didn’t need to use her talker at all the whole session as she was able to verbally request everything. | Saturday was pretty rough. We’ve been stuck at home with a sick Collin and cabin fever is getting the best of all of us. Rory and Owen have been setting each other off a ton, and my patience has been thin. There was definitely a lot of screaming (them) and yelling (me) and frustration all around. We went over to baseball to watch some of Carter’s game and stayed in the car since Collin still had a fever. Owen wanted to sit in Carter’s seat, and so did Rory. They tussled and then Rory bit Owen on the back. I told Collin to buckle her back in her seat while I was comforting Owen and she was so mad she bit Collin’s hair and pulled. Sigh! She was reasonably happy the rest of the afternoon though once we all calmed back down, and she fell asleep around 6 and slept all night. This morning she has seriously been delightful! Happy, sweet, playing independently, chatty. | Poop has been awful for a whole week now. After so much poop success it’s definitely disheartening to see her struggling there. And while thankfully she’s not having pee accidents despite being in a pull-up full time, she IS having poop accidents (hence the pull-ups). This morning was the first day I’ve managed to get her on the potty before she had an accident, so I’m hoping maybe we are on the upswing. | In our stem cell group we have been discussing gram-negative bacteria and how their lipopolysaccharide (LPS) production can cause primed microglia in the brain. There is a theory that kids with Klebsiella bacteria (a gram-negative bacteria) are non-responders to stem cells, and when I looked at Rory’s stool profile, she actually had two Klebsiella bacteria in her dybiotic flora section. (The third was Enterobacter, also gram-negative.) This article in particular literally made me cry when I saw that LPS can cause white matter injury, and I keep coming back to the MRI Rory had that showed “a few tiny foci of signal change within the frontal subcortical white matter greater on the left, which many reflect incidentally noted proteinaceous perivascular spaces that were of uncertain etiology and may be seen in the setting of remote insult but of doubtful clinical significance given their size.” Now this doesn’t sound like a huge deal, but let’s break it down. The foci of signal change are actually tiny lesions…the frontal subcortical white matter builds neural connections between cortical and subcortical regions and constitutes the basis of neural networks…and those perivascular spaces that I’d never researched until just now, are involved in inflammatory processes of the brain. Everything I am reading about these topics involves dementia, Alzheimer’s, ALS, MS. So why the heck didn’t someone think it might be of clinical significance in my severely apraxic 4 year old?! Now Dr. Kurtzberg, the lead researcher at Duke who is running their CP and Autism stem cell trials, believes that stem cells, particularly CD14 monocytes, can heal issues in the brain. I KNOW by looking at Rory that she is making progress, so I have to believe that the treatments she has already had have helped with whatever is going on in her body, but we just have to figure out a way to resolve whatever is happening in her gut to stop that LPS from creating future damage, too. We ordered the Ubiome Explorer gut test to get an updated and more complete picture of the beneficial and dybiotic flora that are currently in there wreaking whatever havoc, and we will go from there.
Day 67: Friday, April 19, 2019
The week was a mixed bag with behavior. There have been moments of pure awfulness and many delightful ones too, but at the end of the week, it averages out to a reasonably good one. | Rory’s poop is FINALLY back to being good again, starting yesterday and continuing today. From dairy to virus to gluten, it was a rough few weeks, and behavior is always worse when her poop is awful, without fail. There was also a big fat full moon last night, which also effects behavior. So it’s only up from here! | Rory just keeps getting chattier and chattier. Nicole wants me to focus on getting her to consistently put two words at a time together, noun and verb, on her own, so we have been working on that and she is doing a pretty good job with it. | She is also really understanding happy and sad. Owen was crying today and she repeatedly says “sad, sad, sad!!!” I also asked Glenn if he wanted to go for a walk and Rory overheard me and wouldn’t let me get away withOUT going for one. “Walk, walk, walk, walk!” She was labeling things as we went, too, which is just so different from the very quiet (and yet NOT quiet at the same time) little girl we had just a few months ago. “Swing,” “flag, “bunny,” “red” (stop sign), “truck.” | Her class picture is on the refrigerator and she pointed at herself and said “me” and then as I pointed to friends, she told me their names. | She’s also learned how to operate my phone more efficiently, which is both a pro and a con! She’s learned that if she opens Safari, it gives a choice of a few apps that can be opened, so she picks the YouTube (which she can say) icon and then navigates through it herself. Her new favorite is the GoNoodle Hello song, which she loves to say “hello!” now. She also figured out on the Hulu app how to change from the Kids profile to my Mom profile so she could find Grey’s Anatomy to watch, lol. This is a new level of understanding how technology works, which is very much ingrained into many children today but Rory just didn’t have it before. | We’ve decided to move forward with the 2cc+ Stemell cord blood product for round 4, which has 30 million TNC, the largest dose she will have had yet. I’ve done a TON of research lately, talking to Stemell and Invitrx labs to make sure I’m understanding their white papers correctly, and Stemell has the highest CD14 content. Since I started listening to Dr. Kurtzberg’s (from Duke) lectures, I have really wanted to see what CD14 can accomplish for Rory, so wheeeee! Here we go! I’m just waiting to get on the schedule now, and we will be doing it locally with another clinic in our area that I’m excited to visit because I’ve heard good things about them. Hoping for some time in the next two weeks!
Day 71: Tuesday, April 23, 2019
Easter not surprisingly kicked our butts a bit. Rory got Poppy (from Trolls) jammies from the Easter Bunny, so instead of wanting to wear a pretty dress and go out to hunt for Easter eggs, she had a complete meltdown. So often I get hung up on what is the “right” way to do something, which is essentially the standards I hold my three other children to. The boys know that on Easter they get dressed in what Mommy tells them to wear, have to be patient until it’s time to go hunt for eggs, etc., and Rory just isn’t there yet. I keep trying, because really, she will never learn if I don’t make her try, but sometimes it’s just completely counterproductive and makes us all miserable. Glenn took her back inside, let her wear her Poppy jammie shirt with jeans, and then she came out and hunted for eggs with us much more happily. Then once we finished, proceeded to put on full Poppy jammies, Minion goggles and her pink backpack and push her shopping cart around, happy as a clam. Sometimes it’s best for everyone to just let Rory be Rory and stop worrying about what everyone else would think about our decisions. | The past two and a half days have been pretty lovely. Of course there are a few moments of discord, but she has been pretty happy and sweet, which is my favorite kind of Rory. The only thing I noticed that was different is that we had run out of her NAC supplement for a few weeks, and I started that back up on Monday. I honestly didn’t think it was doing all that much (and actually I just switched from the tablet that dissolves in a drink to a pill I crush up with her other supplements and add to her pear mango sauce) but maybe it actually is helping? I’ve also cut her supplements from twice a day to once a day, so she is getting a lot less than she was before. I was worn out from fighting with her twice a day, especially when our mornings are so freaking hectic just trying to get four kids out of the house, so once a day it is. I hope that as her gut heals she needs less extra stuff anyway, so fingers crossed. | Had another poop setback this week. I got brave and ordered Chinese food for dinner again (I get R&O’s meal with no sauce and ask them to use clean pan and utensils to hopefully avoid the soy) but apparently that is just a stupid move and she had awful #1 poop again on Sunday. No more Chinese food for the littles! Monday was no poop, but today was back to #3, and I’m going to try to avoid food allergies for a little while at least! | Speech is still going great. Rory can now repeat 1-10 after me, but she has trouble with seven so she skips it and goes straight to eight. Which is awesome because it means she actually is counting and not just repeating. Also not sure if I ever added this, but she is saying Grampy well now, which is awesome because my poor dad hasn’t had a name with Rory yet! We are getting more and more 2 word sentences and a few 3 worders too which is awesome. You can actually have a back and forth chat with Rory now, certainly not rocket science, but being able to COMMUNICATE with her is so amazing! I need to write another summary post before she gets her next stem cells ON MONDAY (woooohoooo!) and I will talk more about our speech observations there.