Damian's first physical therapy session this week started off with a big surprise!
A couple weeks ago, an equipment vendor representative came to a physical therapy session to go over a bunch of equipment options. He said that the chair that I really wanted for Damian was usually not covered by insurance, and I was disappointed because his suggested alternative didn't seem nearly as versatile.
I was so touched when I found out later that through the kindness of the people at our therapy clinic, a foundation with connections to the clinic went ahead and ordered the chair for Damian, free of charge to us!!! And it arrived this week!!
Introducing the Firefly Go-To chair!
Damian screamed with terror as his physical therapist and I slowly strapped him into this new contraption, but after we put a tray and a toy in front of him, he seemed to have a moment of realization that this supportive chair was going to help him play better, and he got so happy! I've never seen him sit up so straight and he just looked so much more comfortable as he played!
I can't get over how tall he looks in it! Since Damian is usually laying down or slouching heavily when he's sitting up, I hardly get to appreciate how much Damian is growing. I always notice the maturing of his face, but this cute boy inherited tall genes and it always catches me by surprise when Damian's in a position to show them off!
I'm so grateful to everyone who helped to get this chair for Damian! Among the top reasons why I wanted this particular chair was because the versatility of it allows it to strap into the seat of a grocery cart! Those who follow me on Instagram know that grocery shopping has been pretty physically taxing for the past couple months as Damian gets weaker and I have to support him with both hands the whole time so he doesn't fall over, bang his head on the back of the seat, or knock his teeth out on the handle bar.
I'm going to definitely be utilizing all that this chair can do, so expect to see some more pictures and reviews soon!
As a side note for those wondering, it is truly atypical of babies with ASMD to grow as well as Damian is, and we have his healthy appetite (and all your prayers!!!) to thank for that. Even with the chronic vomiting Damian has had since birth, miraculously, there's never been an ongoing concern for malnourishment. And the fact that his body is seemingly growing at a faster rate than his enlarged liver and spleen also means that there is more room in his abdomen to accommodate his organs, with less pressure of other organs pushing against Damian's stomach, resulting in less vomiting (he's now averaging 1-3 incidents per week rather than per day)!
Why We LOVE Therapy
Oh my goodness, I am so grateful for Damian's therapists!
I'll be honest, thinking about getting this chair and all the other equipment we're ordering has been hard. It's hard to have to directly confront the fact that Damian is different from other kids. Beyond that, getting specialized equipment, as wonderful and beneficial as it is, feels kind of like we're hitting a milestone along the journey of this disease. Talking about it makes my mind wander further ahead and wonder how many other (potentially irreversible) milestones we'll have to reach before Damian can get effective treatment: when he'll need to get a feeding tube, when he'll need to stop eating with his mouth entirely, when he'll need an oxygen machine, when he'll need a hospital bed, and on and on.
But Damian's therapists live in the moment and focus on the ability Damian has on the specific day of each session. I am so grateful for that! Wherever Damian is at, whether he's having an off day or not, they gauge his energy level and motivate him to do as much as he is able to that day. There are definitely long-term goals in mind, but each individual session is just about getting the best effort Damian can give that day. And now that we've been doing therapy for several months, we are really seeing the comprehensive results of doing our daily best, and those results have been amazing!
There's a life lesson in there somewhere, I'm sure of it.
Currently, Damian has 4 different therapies he attends weekly: physical therapy (2x), occupational & feeding therapy (2x), child development therapy, and speech therapy. We just signed paperwork to get Damian started on group therapy as well, which will hopefully encourage Damian to mimic some of the things he sees the other kids doing. He is so social, I'm sure he will love it!
Where We Started
When Damian was first evaluated for therapy (he was 20 months old at the time), they found that he was developmentally at about the level of a 9-month-old on all accounts. Later, Damian began his first week of therapy sessions at the beginning of March 2021, right after he was discharged from Children's Hospital and recovering from his Grand Mal seizure. He was on seizure medication then, and had just stopped being able to push himself up into a sitting position from being on his tummy. I was terrified of how much mobility and strength I'd watched Damian lose so quickly. Just two months earlier, he was pulling himself up to stand and walking with assistance. At our first occupational therapy sessions, where we did a lot of tummy time, Damian couldn't even really lift his head up to look forward.
My nerves were certainly not calmed by the doctor who gave us Damian's initial diagnosis - he made sure to assert that Damian would only get weaker from then on. He could not get stronger. He said the point of therapy was to slow his developmental regression only and that we should simply aim to keep him comfortable rather than try to achieve any "temporary physical gains."
Given that instruction, I felt a bit skeptical when each therapist urged me, "Never say never - children shock doctors all the time!" The skepticism was a defense mechanism, I admit. It's just honestly scary to try to have hope again after it's just been brutally crushed. I couldn't bear to get my hopes up only to be smashed again if it turned out that the doctor was right.
Damian didn't know his diagnosis though. And the therapists each insisted progress could be made. I certainly wasn't going to stop them from doing what they do best. And now, here we are, about 5 months later... and progress has indeed been made!
How It's Going
For lack of a far better way to phrase this, it's surprising to see the nuances of what this disease is and isn't affecting as it progresses. On the one hand, Damian is getting weaker. Damian has lost the ability to sit up on his own without using both hands on the ground for stabilization (even then, he only lasts so long before he falls over; the arrival of the Firefly chair was perfect timing). Damian's digestive and mouth muscles are weakening and it's getting hard for him to even perforate a slice of bread with his teeth. Mentally, Damian is getting slower and becoming more unbalanced. He seems to be losing more control of his arms and his movements are becoming far less precise. Yes, it is absolutely heart-shattering.
And yet, on the other hand, Damian is getting stronger! During tummy time, he can play with a toy in front of him and can get himself up to rest on his elbows, with his head up and looking forward, for long periods of time! For pity's sake, Damian is starting to pull himself along the ground again!! And in the past two weeks, he off-and-on has started saying "more" in sign language at meal time, something he hasn't done in months! And there has definitely been a lot more babbling since he first began speech therapy! (He still has never said my name but will say "Daddy" all day long...)
Damian has also gotten a lot more tolerant of "side-sitting," and will, on a good day, even allow his therapists to help him into a standing position! I almost cried the first time that happened.
Every session of therapy completely wipes Damian out and he will usually fall asleep on the car ride home and nap for hours, or at least until the time we leave again to go to a different therapy. But he loves going. Seeing him smile on the swing, or so determined to knock over blocks that he'll try to crawl or stand, or charmed by and curious about a new toy — it's my favorite thing!
I cannot express how grateful I am for this wonderful resource and the even more wonderful therapists who love on my baby every week. We've had the heartbreak of having to transition to new therapists twice (we miss you SO much Miss Tessa and Miss Madeleine!!!) but of course every new therapist we have the pleasure of meeting is so sweet and loving. Damian, like every child, is a really good and really immediate judge of character, and he loves each one of his therapists so much. Every relationship we have is irreplaceable!
And I'm going on the record now when I say that despite my initial reluctance, therapy has indeed given me hope. I'm an emotional wreck nowadays, with all the feelings on the spectrum running through my system like an Olympian relay race, but among the top runners now is Hope. There is a reason therapy has helped Damian so much. There is a reason Damian is growing as surprisingly well as he is. There is a reason he is truly the cutest boy ever and can capture the heart of a stranger in a second.
Damian has a mission here and we're doing all we can to achieve it. Six months or so ago "we" meant just Damian, Brock and I, but I thank God every night that that number is growing.
We're going to win this fight.