As of May 22nd, 2022, Damian has officially been taking the first of the experimental treatments we've been able to access for ONE WHOLE MONTH!!!
Of course, Damian has a bunch of blood tests, MRIs, exams, and assessments that he's taking regularly to monitor any changes, but everyone is in agreement that IF this treatment works, the changes will likely first be seen in his behavior - which means I will notice it first.
Because of this, I've been tasked with taking notes and video to monitor how things go on the treatment. I've decided that every month, I'm going to film Damian doing the same series of activities, and MAYBE we'll see some concrete evidence that the treatment is having some effect. Here's what I decided on:
I wanted to choose activities that clearly demonstrated abilities in one or more of the following categories: gross motor skills, fine motor skills, speech & communication, and feeding & digestion.
Damian and I were able to film this all on May 27th, along with my commentary! You can watch the full report here!!!
As mentioned in the video, there are a few things on that list of activities that weren't really "activities" Damian could do in a single video. So in addition to giving a general overview of what I've observed in the 4 categories here, I'm also going to talk about specifically about those couple items in detail in this post.
Gross Motor (Big Moves)
One of the biggest differences I've seen in the past month is an improvement in head control and torso stabilization. I notice it when I'm holding him on my side and he's not completely collapsed on me. I've noticed it when he's sitting in his high chair. I've noticed it when he's on his tummy and lifting his head up to look ahead. His head is more steady than it was a month ago.
I also feel like his efforts to move have increased a lot - I definitely see this when we're trying to army crawl and I actually feel and see his arm muscles flex. He still doesn't pull himself forward but there have been one or two times where's he's been pretty darn close!! Definitely improvement from last month, when he really was just all-but-not even trying.
Fine Motor (Focused Moves)
The biggest improvement I've seen in respect to fine motor skills is his tolerance with holding things. A month ago he wouldn't grip anything for more than a second or two, and in the past couple weeks I've seen him hold on to things for as long as 10 seconds at a time! He's even started successfully pulling things apart (like the little toy alligators they have in therapy) and pulling magnets off a board. I also think his aim has gotten better, like when he reaches for things. It's SO exciting to see!!
Speech & Communication
Damian currently isn't making many (if any) hard consonant sounds (like "da" or "ba") - he's pretty much sticking with "ya-ya-ya" when he babbles. BUT he does seem to be babbling more and doing it with more gusto (haha)! Overall his voice seems to have more energy behind it and that is very encouraging!!
One of the biggest differences I've noticed this month is that when Damian is at the peak of his energy, his whole face seems brighter and more alive! His eyes even look a little less tired than they used to always be. A handful of people have been telling me this too after our past couple "Story Time with Damian" weekly Instagram Livestreams that Damian seems to look more alert and focused - and those are even at the end of the day!!
This category had a couple items I couldn't describe in the video, so I'll detail my observations here:
"Note what Damian Understands"
This is probably going to be a tricky thing to monitor month-to-month, but I do think Damian does understand a LOT. The other day I was prepping Damian's treatment dose: Damian was in his high chair and instead of putting a little scoop of yogurt in a shot glass, like normal, I saw we were out of yogurt, so I put a little bit of ice cream in it instead. Then I cracked open the drug capsule and poured the powdery contents on top and carefully mixed it up. I came over and got ready to give Damian the spoonful, but he got really squirmy and fussy. He did not want to eat it.
"Damian," I argued, "you will like this, you will like this!"
Still super fussy.
"Damian, this is ice cream!"
As soon as I said that, Damian stopped and focused on the little glass cup. His face softened and then he opened his mouth really wide! Nothing had visually changed - he didn't see an ice cream carton on the counter or any other clues. He just knew what I was saying! My smart little boy!!
Damian understands a lot of words, like bottle, sandwich, ice cream (clearly!), food, ball, his own name, swing (I think), phrases like "Want me to hold you?" and "where's Mommy?," and I'm pretty sure he still understands what I mean when I say "let's go!" because he usually gets pretty excited when I say that!
"Note how Damian Communicates"
Damian communicates the same way a baby communicates: he cries when he wants something, he screams when he really wants something, he babbles when he's playing, he laughs when he thinks something is funny, and he squeals when he is having a really good time! Just like a baby, I can tell what he wants just by the way his crying sounds.
Sometimes when we're playing or he's eating something I can get him to make a very loose interpretation of the sign for "more," and sometimes when I'm clapping he will move his arms excitedly as if trying to clap as well (which is SO cute to watch!). The difference I've seen in his communication this month is, as I'd said a little earlier: he seems to be babbling more and with more energy in his voice. Maybe once or twice I've caught him making a noise that mimicked the inflection of something I had just said - I can't say for sure if it was intentional copying, but it sure made me excited when that happened!!
Feeding & Digestion
A lot of credit must be given to Damian's feeding therapist for the skills Damian has gained in chewing and crunching! Even before we started this treatment, Damian had been making a lot of progress in his eating technique (though his overall stamina was decreasing week to week). Since the treatment started, I've noticed his stamina hasn't decreased, which is a relief considering his lack of eating at nighttime (both due to his low energy levels and his super-squished, low-capacity stomach) is the root cause of the feeding tube surgery currently scheduled for the end of June. I'm really really hoping that one more month of being on this treatment will miraculously help him to gain more weight and we can postpone or cancel the feeding tube altogether. But it will likely be all up to whether or not we can increase his caloric intake.
"Note Nutrition & Observations"
Here's what his current diet usually includes every day:
BREAKFAST: 1 packet of instant oatmeal, cooked with whole milk, with 1 scoop of baby formula, about 3/4 of a veggie-based baby food pouch, and his supplements (Vitamin D and Iron) all mixed in together
LUNCH: 1 peanut butter & jelly sandwich on 2 slices of whole wheat bread (he is currently consistently eating about 2/3 of it), 1 or 2 veggie sticks
DINNER: 1 Yoplait yogurt cup and then anything else he will possibly eat (he is usually too tired for more than a bite or two of whatever soft thing Brock and I are eating - mashed potatoes, noodles, etc.)
BOTTLES: We are now almost exclusively giving Damian Pediasure rather than whole milk, and that made an immediate difference in his weight gain! Damian usually drinks 12-16 ounces a day
Damian has been having more issues with constipation, which is typical of children with this disease (muscles getting weaker makes it harder and harder to push out you-know-what). I've been feeding him prunes more frequently (typically adding it to his oatmeal during breakfast), which has helped him be more regular.
Damian still vomits, though I admit I have gotten pretty good at seeing the warning signs and preventing incidents. He currently has 0-3 incidents a week now (triggers are usually related to him being super tired and being in a sitting position or laying down too soon after eating or drinking). THANKFULLY, he has not ever thrown up within several hours of taking his treatment, which ensures that he has been getting the full effect of each dose.
Same time Next Month?
There are a few tests and exams happening in the coming weeks (blood draws, MRIs, and another behavioral assessment), but likely the first real month-to-month comparison is going to be available in a month when Damian and I film this same list of activities all over again. In the meantime, we will be working out and, of course, working hard to finish funding this campaign like we're in a Disney Channel sports movie. We've got a big game to finish and we're in the last quarter with a lot of points to make up - AND WE'VE JUST GOT TO WIN.
Thank you thank you thank you for helping us reach the finish line!!!