It’s been four months since our last entry — which honestly feels like a lifetime and a blink, depending on which memory you land on. We didn’t mean to go quiet. We just needed to step back. Life didn’t slow down after the whirlwind of Owen’s Duchenne diagnosis and treatment, but our bandwidth did. We’ve spent this time doing what any parent would: protecting our kid, adapting to the new terrain, and figuring out how to make the days still feel full of joy, even with the weight of a second diagnosis.

So here we are — finally sharing an update. And what an update it is.

December brought us a really sweet Christmas. We went all out. After everything, we just wanted Owen to feel how loved and celebrated he is. Tons of presents, cuddles, and a new family member — Cosmo the kitten.

Cosmo was Santa’s gift (big shoes to fill after Buddy, our 18-year-old cat, passed in November). Santa found Cosmo through a local rescue, abandoned with his siblings. The energy difference between raising a cat at 22 versus nearly 40 is… real. There still is “what have we done?” moments, but Cosmo’s snuggles and mischief have been healing. Owen adores him.

Also healing? Owen’s obsession with Frozen.

He has fully embraced his Elsa era — singing “Let It Go” at full volume, arms dramatically extended, telling us he’s got ice powers. It’s both hilarious and heart-melting. Mixed in with Elsa time has been his new-found appreciation for Dad’s movie favorites — Star Trek, Star Wars, and Superman — which has made our hearts ridiculously happy. Movie nights have been key in helping us stay grounded.

2025 came in quietly, and Owen kicked off January with some serious imagination time indoors.

The weather meant more screen time and crafts, but also a lot of bundled-up walks and a dusting of snow in February that made Owen light up. He’s loved snow since his first winter — even now, unable to run like other kids, he still finds magic in it.

And then came The Bean Incident™.

Owen came home from preschool one day complaining of ear pain, and we assumed the usual infection. Nope — he said a friend had stuck a sensory dehydrated bean in his ear. Sure enough, one ER visit later: bean confirmed. But the truth came out post-extraction — he’d done it himself. There was a long talk about honesty and body safety… and a moment of “how is this our life?” laughter.

March opened with Owen faking a sick day to skip school. Convincingly, too.

He laid on the guilt thick until Daddy caved — only for Owen to transform the office into a makeshift toy explosion and personal playground. There were minor consequences (mostly heartfelt chats), but preschool is extra important now. Especially since Owen recently learned to write his name all by himself — a huge win we celebrated with seriously impressed high-fives.

He’s been invited to two birthday parties recently, and they’ve brought up some tough realities.

Owen wants so badly to keep up with his peers, but Duchenne has already made running difficult, and moments of falling behind or sitting out are hitting him emotionally. It’s hard to explain to a four-year-old why he can’t move the way other kids can. And it’s hard to watch — gutting, really.

A look at how difficult it is for Owen to just make a step up.

A look at what the Gower maneuver looks like. This was the first thing that flagged our PT that he might have DMD before his official diagnosis.

*How one small corruption of a gene can completely change the context of how it works.*

These past few months have been a crash course in genetics and the heartbreaking math of DMD.

It’s a genetic disorder that can just randomly occur in one-third of cases. But in Owen’s case, it’s inherited — Melissa is a carrier, something we didn’t know before.

Because women have two X chromosomes, they rarely show symptoms — one healthy X “cancels out” the mutated one. But for boys, who only have one X, there’s no backup. That’s how it happened to Owen. Now, It’s not about regret, and it’s certainly not about blame. It’s about knowledge.

Knowing that DMD can silently pass through generations without any symptoms — especially through women who are carriers — makes genetic screening such a powerful tool. Even though Melissa’s uncles are healthy, her aunts could very well carry the gene, and their grandchildren or great-grand children could be at risk. That’s the case even if boys have been born without it because remember, it’s a 50/50 chance. And if you ever flipped a coin, it can seem to land on heads more often than tails.

*Showing how DMD can exist in a family for a long time until a son gets the unlucky side of a coin flip*

And while it’s entirely Melissa’s aunts or nieces choice whether to pursue testing, we now understand how much clarity it can bring. For families like ours, this kind of testing isn’t just about identifying risk — it’s about being able to plan and access options that could prevent the heartbreak of this preventable disease.

Had we known before trying to conceive, there are safer, medically supported paths we would’ve taken. Genetic testing doesn’t change the love we have for Owen — nothing ever could — but it can change the story for another child in the future. And that makes it worth talking about.

The past few months have been full of maddening delays. Owen’s exon-skipping drug — which can slow DMD’s progression — was sitting in our fridge for weeks because insurance wouldn’t approve the nurse to administer it. The drug alone is $29,000 per week, and it was just… sitting there. Red tape. Misfiled paperwork. More waiting.

We also hadn’t heard much from Owen’s DMD specialist since November, which sparked a few intense conversations with the hospital. Turns out, DMD clinics are severely underfunded. There’s one neuromuscular pediatric neurologist for the entire state of Oregon. One.

Luckily, Owen’s oncology team — who we owe everything to — stepped in. Dr. Schlis coordinated a major meeting with Dr. Finanger, the DMD specialist, and both teams are now working together to craft a plan that balances chemo and DMD treatments.

Because here’s the kicker: leukemia drugs like vincristine and methotrexate can worsen Duchenne. We’ve had to cut Owen’s chemo dose in half temporarily to give his liver (which has been inflamed for months) a fighting chance.

While the news reporter calls it a “cure”, it is not. It’s a step in the right direction, but there’s new evidence to show that progression continues.

One of the big names in the DMD world right now is Elevidys, a gene therapy that delivers a shortened, functional version of the dystrophin gene. It’s been FDA-approved for boys aged 4+ with a confirmed mutation. Owen’s a candidate. But it’s not a silver bullet — in trials, it didn’t hit its main goal, though secondary results looked promising.

It’s a one-time IV infusion. Two hours. $3.2 million dollars. And you have to be in good health — especially liver-wise — to qualify. So, right now, it’s a waiting game: preserve liver function, stay infection-free, finish leukemia treatment, don’t relapse and keep moving forward.

Owen’s has got new braces to help with his foot drop, and soon, an assistive walker for when he tires easily as well as a motorized wheelchair for inside the house. We’re looking into ramps and bathroom remodels, none of which are covered by insurance.

But honestly? We’re just focused on what’s next.

Owen turns five in just a couple weeks. How is that possible?

We’re throwing a space-themed party on May 3rd at an indoor playground he already knows and loves. There’s a big three-story slide he’s still wary of — but who knows, maybe this time he’ll give it a go. We’re inviting everyone — friends, family, folks who’ve been cheering him on from afar. So look for an invitation soon.

Owen deserves all the fun he can have. Every moment of celebration. Every ounce of joy.

We’re trying not to live in the fear of what comes next. There’s too much life to hold in the present. Thank you — truly — for walking this journey with us. For the messages, the check-ins, the laughter, and even the quiet support.

This story isn’t over. And we’re so grateful you’re here for all the chapters ahead.