It has been such a busy week that I haven’t had even a few minutes to sit down and blog about Rory’s latest stem cell therapy, sheesh! She had her fourth round of stem cells on Monday, April 29th. We used Stemell cord blood, the 2cc+ 30 million TNC dose. We primarily chose this product because it has the highest CD14 content of any of the US lab products, and after watching Dr. Kurtzberg at Duke talk about how they’ve isolated CD14 as the most important component of cord blood because it is actually able to heal damaged brain cells, it was my goal to get as much of it into Rory’s body as possible and see what happens. Note that the dose Duke gives is SIGNIFICANTLY higher than anything you can get outside of Duke, but we still got about 6.5 million CD14 cells from this round and have fingers and toes crossed that they are working hard in her brain right now. We also were able to do this locally again, with a different doctor than our last two rounds, and I was reminded again how completely lucky we are to have OPTIONS so close to our home!
On Monday we first saw the doctor, and then they took us back to a private room for the procedure. The clinic was very busy and there were several adults getting various infusions in the infusion room while we were there, so I’m sure they were less than thrilled about the small, screaming banshee next door! When it was time to start, Rory laid down on the exam table and they swaddled one of her arms down with a blanket. (Note from here on out, she was screaming the whole time!) I was up on the table with her securing her legs and helping hold her still while one nurse held her right arm still, another nurse used their infrared vein scanner machine to find the best vein (seriously amazing!!) and then the IV nurse–on her FIRST TRY–secured the IV, flushed the line, locked it in, wrapped it up with hot pink gauze, and then wrapped her arm on a board to keep it from getting ejected by my very small, strong person. Usually this clinic gets out the cells when you go back and they thaw while the IV is getting secured, but because several of our friends had rough goes lately and their cells sat out for an hour (which can impact viability) we asked them to secure the IV and then palm thaw the cells (rubbing the tube between their hands) which they agreed to do. Rory was MAD for those five minutes, but I know we had as many viable cells as possible this way. It seemed like about an hour went by, but they quickly brought the cells back in, injected them, flushed with saline and then reversed back through the process and removed the IV. Again, Rory was just as mad about the bandage being on her arm afterward as she was about being pinned down on the table, so I had Glenn take her out to the car while I paid so as not to further disturb the peace of the clinic! The infusion itself could not have gone more smoothly though, so we were very grateful and relieved to be done.
Rory didn’t have any negative reactions to the cells. She was a bit more edgy than normal and had a few meltdowns over the next two days, but the past few days have been relatively smooth and she’s been more even keeled. But on to the journal!
Day 4: May 3, 2019
Rory has been extremely chatty the past few days but I’m still trying to figure out where the gains from last round ended and from this round begin. I was bad about taking notes over the past week, but here are a few highlights from our Thursday and Friday. We had Rory’s third Mother’s Day tea at our preschool, which is usually a bit hard for me because it really highlights how behind her peers she is, and her behavior is usually challenging. All of the kids get up and perform three songs, and while of course Rory didn’t sing, she did dance around a bit for the first two, and then for the third one, Wind Beneath My Wings (waaaaah!) they had scarves and waved them around just like they do in Rory’s ballet class, and she did GREAT! I may have cried a bit. Otherwise she was a bit overstimulated (there’s a lot of people and it’s loud!) but she was happy, gave her friends hugs, and we survived! | We recently got her class picture and have it up on the fridge. She loves to point to her friends and say their names. Since I’d finally identified most of the boys today (there are 14 of them in her class!) I went through the whole picture today and she could say all of their names! I wouldn’t be able to understand her if I didn’t know their names (her articulation is still pretty rough) but I’m still amazed that she has gone from not saying any names to saying all of them. Also, there was one kid I didn’t recognize. She said “Jack” but there are two Jacks and I knew he wasn’t one of them. I was so thrilled when I realized his name was Jaxon! | In the evening she wanted a drink. We have a bowl with packets of powdered electrolytes on the counter, and she went over and got one. I told her it was grape and she said “grape.” I said we have to find her doggie cup that she drinks out of and she said “doggie.” I put the powder and water in and closed the cup and told her we had to shake it up and she said “shake.” | This morning she woke up and I have to get her in to the bathroom first thing where she usually has her morning poop. Today she went pee and started to stand up. I told her to sit a little bit longer and try to go poop. She reached up and grabbed the roll of toilet paper, handed it to me and said “done!” I told her ok, but asked her to please let me know if she needed to poop later (usually if she doesn’t poop first thing she has an accident). When we went to brush our teeth, she sat down and pooped, hooray! | We took the boys to school this morning but left Owen at home still sleeping with Daddy. Rory said “Owie night night” in the car and I told her we needed to go home and wake him up. She went running into the bedroom when we got home and said “Owie wake! Daddy wake!” | This morning we were at ABA waiting in the lobby with her friend Jett. He had a see and say with farm animals on it. It said “the cow says” and without a beat, Rory said MOOOO!
If you haven’t read one of my journals before, this is the part where we talk about poop, because it is a huge indicator of what’s going on in Rory’s body. Poop over the past few days has been pretty crazy, and while I had heard the word “pootox” thrown around by other parents after stem cells we had never experienced one. I think this was a pootox. #1 poop the past few days (on scale of 1-3 with one being unformed, 2 being semi-formed and 3 being formed), one day it was orange, one day it was tan, just seriously WEIRD poop. Today it was back to #2, so I’m hoping we will go back to normal tomorrow? I’m very curious what would cause such weirdness but will continue to track. We turned in our Ubiome sample between the last round and this fourth treatment so I will be curious to see what’s going on with her microbiome these days.
A few more good ones… Yesterday we got in the car after Mother’s Day Tea and I handed Rory a bag of fruit for her to eat while we were driving. She threw it on the floor immediately (which she does ALL. THE. TIME. and drives me crazy) and I said “that was not a good decision.” She said “cision” and giggled. | Again with the fruit, I gave her a bag of pineapples and blackberries when we got in the car after therapy today but I didn’t open it. After we’d been driving for a few minutes she tried to open it and had trouble. She said “help…mommy….please!” So I pulled over to open it for her! | Finally I’m not sure how long this has been going on, but Rory has always been a major mouth breather and has snored forever. It wasn’t something I even consciously thought about because I was so used to it, but I noticed two nights ago that when she was asleep she was breathing through her nose and NOT SNORING!
Day 5: May 4, 2019
We were getting the kids ready for bed last night and all four of our children were playing together in Rory and Owen’s room, which in an of itself was cool. Rory and Owen got the food bin out and were playing in the play kitchen together with BEAUTIFUL pretend play skills…totally normal for Owie but I have never seen Rory do that before! Then she started doing this weird babbling, not actual sentences, but she was putting together multiple sounds in a collection. I almost wondered if she was regressing, but she still is saying all of her usual words too. I think it’s just experimentation with sounds, a step she definitely missed developmentally. | This morning I could tell Rory was out of sorts. We got up and when we came out to the living room she started gagging a bit. I got her into the kitchen and got a plastic grocery bag out where she threw up a teeny tiny bit. She had a temperature of 101.5. I parked her on the couch covered in towels with a bucket and she willingly rested, then took a long nap. When she woke up she was kind of cranky but obviously feeling much better. Now at 1pm she is sitting in my lap eating everything in sight with a normal temperature. Now this is especially of note because at 1 day post her first round of stem cells (also cord blood) and again at 3 weeks after, this exact same thing happened. Fever, one vomit, and then fine. Discussing it with my stem cell buddies, it appears this is the immune system waking up and showing a response. Fevers are generally GOOD things and this is a sign that she is responding to the treatment. We definitely didn’t see it with cord tissue, so this appears, for Rory anyway, to just be a cord blood reaction. | #3 poop in the potty! She didn’t go first thing in the morning, but just now told me potty and pooped, so our weird pootox seems to be over! We also got her uBiome test results back this morning, so I am trying to figure those out and what else we can be doing to help her gut and microbiome work more efficiently. | Rory now will now fill in words in a few parts of movies she has seen a lot, like in Trolls when the Chef is introducing herself and then says “me” Rory says it in perfect timing. (I do this too, so it is cute to see her start doing it!) She also has picked up that Poppy the Troll has a cowbell she keeps in her hair, so when the first song comes on, Rory hits herself in the head like she is banging a cowbell.
Day 6: May 5, 2019
Nothing terribly exciting to report today, but it was a solid, good day at home. Generally the days we are at home and don’t do anything are very cabin fever-y and we go crazy but today was actually reasonably nice. Rory has just been sweeter overall these past few days, reminding me why I loved cord blood so much last time. | At our 90’s themed Mother’s Day Tea the kids sang to Who Let the Dogs Out, which was so funny! Now Rory asks for “who!” and wants to watch it on YouTube, where she proceeds to dance around. Very cute! | I also noticed today when there was an animal sound song that she can say almost all of her animal sounds now, whereas before stem cells, she could just growl.
Day 8: May 7, 2019
Today was one of those really hard mama days that I just have to get through the other side of. Yesterday was great, and honestly, I was starting to feel super optimistic about how well things were going for Rory. So I guess we were due for a bad day. We started off the morning with Owen climbing on Rory, making her mad, so she bit his leg. He was understandably hysterical. I got him the Elmo Booboo Buddy ice pack at which point Rory lost her cool because SHE wanted the Elmo Booboo Buddy ice pack and continued to be hysterical until about halfway to school when she finally settled down. Today at school was her unbirthday since she has a June birthday. At their school they get up in front of everyone at chapel, say their name and how old they are turning, so today was Rory’s turn. I was so excited (she practiced and did great!) but Owen decided he had to play with my phone while we were waiting and when I took it back to video Rory he lost HIS cool and we had to leave before I got to watch Rory’s big moment. Spoiler alert: she did great! And the director told me we can do a do-over next week since she saw us leaving. Rory also had a dicey session at OT today, lots of nopes and just not being cooperative. We also happened to have Carter’s school band & chorus concert, and Glenn had to be at baseball practice with Collin, so it was me and the littles. My parents thankfully were able to make it too, but I wasn’t too optimistic about our chances of surviving. It was lovely, but it was LONG. They managed to make it through the first hour very well (though I likely have no data left on my phone), but of course once it was Carter’s turn to go on for chorus, both Rory and Owen were DONE and were being so disruptive that we had to leave and stand outside the auditorium until it was finished. They were literally running all over the place, and I was just so frustrated that I had to miss my kid doing something special. Then my friend Jenny came out with her daughter to go to the bathroom and told me Carter had just won an award. His class had to vote for the most valuable musician for the whole class and he won. I am so amazingly proud of him (seriously, he has had quite a week!) but so frustrated I missed it. My mom came out to check on us and I burst into tears. I know life with little kids is hard in general, and I certainly wasn’t the only one with a little kid who couldn’t sit still for the whole program, but I just want something to be easy for once. And I’m grateful for how much progress Rory has made, don’t get me wrong. But can I just have one day that I am not stressed out? It has been a really long time and I am just sad.
Day 11: May 10, 2019
Wednesday was a really low day for me. After the awful concert behavior on Tuesday we had another AWFUL morning where Rory and Owen just could NOT get along and there was so much screaming that I completely lost my cool and had a Mommy meltdown. I used to be a big-time crier, but since having kids I’ve actually been LESS emotional in general. But Wednesday I was a wreck. I had myself a huge cryfest, wrote about the things I was struggling with, and then attempted to get over myself. Thursday was still hard in a lot of ways, but I was in a better frame of mind. This morning we actually managed to make it through the whole morning with no one crying, screaming, hurting or yelling, so it feels like a major win, even if it was a total fluke, lol. | Neat Rory gains…Thursday at school we parked next to our neighbor friends who we haven’t seen for a while. They have a cute redhead son Oliver who is a few months older than Rory. Yesterday she said Oliver for the first time, so yay! | She had a booboo on her knee (still not sure whether it came from school or therapy) and Glenn took her in and put a bandaid on her. She has never in her life left a bandaid on, and while this one didn’t survive the car ride we went on shortly thereafter, she did actually leave it on for a little while and said “booboo.” | We’ve been getting more two-word phrases from her…like “play Owie” and “Owie wake!” and “green guy” for the little pedestrian crossing guy in the therapy parking lot, also “bye green!” I know there are more too, but those are the ones I noticed today. | Poop has been really good the past few days, all #3 in the morning, no poop accidents. A few pee accidents, though. She’s actually been transferring inside from napping in the car after school (some really solid naps lately, I think she has needed a bit more rest), and without fail, if you don’t get her to the potty as soon as she wakes up, she has an accident. Sleepy Rory is awful with bladder control! But it also used to be a given that if she had a meltdown she would have an accident and I haven’t seen that happen in a long time now. | We have had a refinement of certain words. Anna from Frozen (pronounced Ah-na if you haven’t watch it fifty million times like I have) has always been Nah-na, and suddenly the other day was Ah-na. (She was also playing with her Anna and Elsa barbie dolls the past few days!) Puzzles have always been “puzzie” and now suddenly are “puzzle.”
Day 16: May 15, 2019
We have actually had a stretch of good for almost a solid week now! Aside from just having an absolutely DREADFUL time at the baseball game just now (we had to walk across a busy parking lot to go to the concession stand–which was not my smartest idea ever–and Rory and Owen were both being total turds…Rory ended up completely melting down all the way back, literally screaming at the top of her lungs, throwing herself down on the ground and refusing to walk, and finally just being so awful that we had to leave immediately…but I digress!) Rory has been pretty delightful. My latest realization is that I had been relaxing on giving her supplements twice a day and that was not a smart decision. We also ran out of our PharmaNAC supplement and it’s completely out of stock everywhere so we switched to NOW brand NAC and I am giving her 1000mg twice a day (instead of the PharmaNAC once a day which was all I could get her to drink) and it has a definite effect on her behavior. She HATES it, and getting her to take her supplements has gotten HARD, but it’s worth it to have nice Rory more often. | Biggest speech gains: yesterday and again today she said “yellow pineapple”!!! And today she said “Daddy eat apple” which yes, you counted that right, is THREE WORDS and an actual complete thought. HUGE! We get a ton of two word phrases now and just much more speech. | She was “telling jokes” to Nicole at speech today. She said “potty” and Nicole asked if Rory needed to go potty. She then said “Mommy potty” and “Daddy potty” and so on, and was laughing because she thought it was so funny. Nicole has definitely noticed Rory’s sense of humor coming out. | Tuesday was a big day where we had our do-over of Rory’s unbirthday in chapel at our preschool. I got to watch her confidently get up in front of all of the kids in chapel. They held up the microphone and asked her her name…”Rory” and how old she is “four” and how old she will be on her birthday “five” all just clear as day. She then held the flag for the pledge of allegiance and then say nicely back down for the rest of chapel. It was a night and day difference from when she started at our preschool three years ago and could barely say a word, and even night and day from when she started in August. As it was her last day at this school, I was a complete and total basketcase already and I was just so proud of her. I was definitely not the only one in tears, and one of the church directors told me as we were walking out that Pastor Dave leaned over and told them all that if anyone doesn’t believe in miracles, that was proof miracles happen. I am inclined to agree. | Poop has been mostly good…two days ago she didn’t have her morning poop and ended up having a #2 poop accident in the afternoon, ditto for yesterday but it was a #3 accident, today she was back to a #3 poop in the potty in the morning. I have been down a major rabbit hole learning about klebsiella bacteria and Th1 immune dominance the past few days and we will likely be doing some major tweaking of Rory’s supplements. Part of me wants to leave things as-is since her poop has been pretty good for the past 5 months but I just know that the inulin is feeding the klebsiella and we need to kick that bad boy to the curb. We are going to run a comprehensive stool test as a baseline and then figure out our game plan moving forward.
Day 19: May 18, 2019
Rory has been just delightful lately…except for the moments that she’s NOT and then boy, look out. But really, do you know who else that describes? Toddler Owen! The two of them really do try to kill me sometimes (example: today at Publix), but generally speaking life has been much better. Rory has been happier and more affectionate. She is more sensitive herself and is the first to tell you when someone else is “sad.” | Awesome speech gains….she has a friend Beau at ABA and saw his mom parking as we were leaving. She said “Beau-Beau sister” because she loves his sisters. Beau’s mom told me how well Rory is talking now. She was back for a session and Rory saw her and said “Beau mommy!” As I thanked her, Rory said “bye-bye Beau-Beau mommy!” She also just told me “Lulu Black room” to tell me our black cat Lulu was in the bedroom and she wanted me to come get her. Actually Lulu is almost always “Lulu Black” and she found some of our Splat the Cat books and told me it was Lulu Black, so now we read those with Lulu Black every time they reference Splat! | At speech yesterday Nicole did the PROMPT flashcards with her and Rory got all of the CVC cards right! Nicole also noted that Rory’s lip rounding (oh and oo) is PERFECT now and she had absolutely zero a few months ago. Getting her to make multiple sounds let alone multiple sounds together seemed like such a pipe dream last year. Rory’s other therapists have also noticed how much more she is talking now and have commented on the leaps forward she’s been taking. | She has also started filling in words in songs (like Monkeys Jumping on the Bed). And we just started Gemiini back up again and she is talking along with it a lot. The videos we are doing now are focusing on phrases like “I want juice” etc. and she’s not quite there yet but I’m hoping this will help get her there. | We are getting good horizontal lines out of Rory now and she has been scribbling both vertically and horizontally. | Because it’s all not great we had rough times at Carter’s baseball tournament. She hung in for a while but then had a pee accident on our friend’s golf cart (sooooo embarrassing!!) and then proceeded to strip her skirt and undies off in front of everyone. Once again we had to leave early. And the aforementioned Publix trip, the littles were sitting together in the car cart. Rory snatched something from Owie, Owie cried, Rory pulled his hair, Owie cried more, Rory started screeching. I took Rory out of the cart so she couldn’t pull Owie’s hair anymore, then she refused to walk and continued screeching. Had to grab her hand and march her with the cart through the store. There is definitely a reason why I don’t take the littles to stores together unless it’s an emergency and this just reminded me why! And today was Rory’s ballet dress rehearsal which totally snuck up on me since he recital isn’t until the 1st. Last year we brought her costume to OT and they worked on tolerating it with her since she has sensory processing disorder and HATES scratchy clothes. I put it on her for the first time last night and it was absolute hysterics and trying to rip it off her body. I put it on again this morning with much of the same. She was crying so hard in the car that she almost made herself throw up multiple times, poor thing! Thankfully when we pulled up to the dance studio and she saw some of her favorite people she settled down. She was cooperative and even sat with Bailey to get some pictures taken. I know she won’t actually dance in her recital, but I am hopeful that she enjoys it like she did last year! | Poop has been #2/#3 past few days and all in the potty.