Karson Jax Updates

08/30/2026

A long overdue Karson update 💙🐝

I’ve realized just how long it’s been since I’ve updated everyone here. I’ve started this post more times than I can count, but life has simply been moving faster than I’ve been able to keep up.

And if I’m being completely transparent, somewhere along the way, I found myself feeling defeated and fighting what I think may be depression. Defeat is a feeling I’m not very familiar with. I’ve always been the person who figures it out, finds another way, fixes what can be fixed and keeps moving. But I know something in me has changed.

Watching someone you love struggle to live every single day changes you.

Trying to carry that while still being a mom to those who need me, Nana to my other littles, head of the household, the primary everything, the go-to, the fixer of all things, the ATM, the appointment keeper, medical advocate and decision maker, all while fighting like heck to hold onto a career I genuinely love and somehow trying not to completely lose myself in the process has been the hardest juggling act of my life.

There are days I feel like I’m doing a hundred things and somehow still falling short in every direction. I’m learning that there simply isn’t enough of me to give everyone and everything what I wish I could.

But I’m also learning that maybe strength doesn’t always look like handling everything without missing a beat. Sometimes it looks like admitting that this is hard. That I’m tired. That some days I’m not okay. And that even the person everyone counts on sometimes needs someone to show up and help carry her, too.

And recently, a couple of very special people did exactly that, reminding me that sometimes God sends you exactly what you need before you even know how to ask for it.

During a video meeting, my work bestie apparently saw the exhaustion and defeat on my face that I thought I was hiding pretty well. Instead of asking what I needed, knowing I’d probably say “I’m fine”, she grabbed another coworker/friend, and they drove three hours straight to my house.

They came simply to love on me. We laughed, reminisced, they sat in the chaos with me, and helped me care for Karson well into the early morning. There are no words to express what that meant to me, I will forever be grateful.

When I last updated, I had finally brought sweet boy home after another long hospitalization while simultaneously grieving the sudden loss of a loved one. Since then, we’ve continued learning how to hold gratitude and grief, fear and hope, all at the same time.

But most importantly…

Karson is still HOME. 💙

And after everything it took to get him here, I don’t take a single day of that for granted.

Home continues to look different these days. His plethora of medical equipment, monitors, medications and medical supplies have officially taken over every closet, every available corner — and now the garage. We’re constantly rotating equipment simply because everything Karson needs no longer fits in our current home.

So I’ve added another adventure to the chaos…

House hunting.

I desperately need a home that can safely accommodate Karson, his equipment, nurse (once staffed), and accessibility needs while also staying in the current school system. The big kids experienced enough change already, and maintaining that little bit of stability is incredibly important to me.

I’ve put in offers that haven’t quite made it to the finish line, but I’m holding onto faith that the right home is out there. Thankfully, my amazing best friend is also now my realtor and has taken this mission to heart, doing everything in her power to help us find the home our crazy little crew needs. ❤️

As for the little guy, Karson continues to keep me on my toes. His respiratory needs remain significant, seizures are still part of everyday life, and we continue to fight off minor illnesses trying to prevent them from turning into another pneumonia battle. We’ve had some really good stretches and some very scary ones.

Even today, he’s battling a high fever and symptoms concerning for aspiration pneumonia. I’ve gotten his fever down and seizures under control for now, but I’d certainly appreciate some extra prayers for him.

There have been victories, too.

After a long fight, we finally received approval for additional private duty nursing hours. Now comes the challenge of actually staffing those much needed hours. Beginning Monday, we’re transitioning to a new nursing agency, and I’m hopeful this change will finally give us the consistent nursing support Karson (and I) so desperately need.

I continue reaching out to researchers and organizations involved in NKH research and gene therapy. Karson is now registered with CoRDS, and I’ve reached out to people connected to research happening in this space.

I don’t know where any of those roads will lead, but I know the reality of Karson’s disease. I know what we’ve been told. But as his Nana, I’ll keep knocking on every door I’m able to knock on.

Hope doesn’t mean ignoring reality. Sometimes hope simply means refusing to stop looking for possibilities.

And right in the middle of all this medical chaos, our family received the sweetest reminder that beautiful things are still happening, too…

Karson has a brand-new baby cousin and I, my first granddaughter 🥹🩷

His Aunt Haley, my daughter, welcomed precious little Keilani into the world, and she has brought so much joy and light into our family at a time when I think all of our hearts desperately needed it.

There’s something incredibly powerful about welcoming a brand new little life while simultaneously being reminded every day just how precious and fragile life can be.

So that’s where we are.

Still fighting. Still advocating. Still exhausted. Still praying. Still house hunting. Still learning that sometimes it’s okay to let someone else carry a little of it, too.

And above all, still incredibly grateful.

Thank you to everyone who continues to pray for Karson, check on us, love him from afar and celebrate every victory alongside us. Even when I get behind on updates, please know how much that love means.

For now, I’d especially appreciate prayers that this fever stays down, his seizures remain controlled, his lungs clear, and sweet boy comfortable and home where he belongs.

And maybe throw in one little prayer that the right home finds us, too.

06/27/2026

A few days ago, we officially broke out of the hospital.

After another round of weeks of prayers, setbacks, victories, doubt, hope, and more sleepless nights than I can count, I’m incredibly grateful to finally have sweet boy home where he belongs.

But in true fashion, it seems we can never celebrate a victory without a storm rolling in alongside it.

That prior evening, our family suffered a sudden and heartbreaking loss. My bonus dad of nearly 30 years, my kids “Poppa”, and Karson’s great-grandfather, passed away unexpectedly.

The emotions of these last few days have been difficult to put into words.

Our hearts are holding both gratitude and grief. We are thankful to have Karson home while mourning the loss of a man who meant so much to our family. Life can be both beautiful and heartbreaking at the same time.

Thank you to everyone who has prayed for Karson. Your kindness has carried us through some incredibly difficult days.

If I could ask for one more prayer, please keep my sweet mama in your prayers as she begins navigating a loss that feels impossible to comprehend. They shared a beautiful love together, and my heart breaks for her.

Thank you for continuing to love on our family, for celebrating Karson’s homecoming with us, and for lifting us up when we need it most. ❤️

06/18/2026

Today felt like a whirlwind of doctors, surgeons, consent forms, risks, and decisions.

Everything moving so quickly that there was barely any time to process one conversation before another began, all while trying to keep my head above water professionally, making sure nothing slipped through the cracks at work, juggling the endless balancing act of being both Mom and Nana to the children who depend on me, and keep up with the countless responsibilities waiting for me outside these hospital walls.

Karson underwent a procedure today, primarily to address and prevent the ongoing aspirations that are constantly compromising his lungs, causing pneumonia, and contributing to his persistent respiratory distress.

The exhaustion from having the same difficult conversations over and over again is debilitating. Always urgent without any time to process. The discussions about risks. About death. The reality that I had to temporarily revoke his care plan so the procedure could be performed.

The weight of these decisions is difficult for any person to carry.

It’s the weight of deciding whether to pursue an intervention that might save an innocent child’s life while knowing it could also be the very thing that takes it. It’s the weight of understanding the reality of his condition and questioning whether intervening will improve his quality of life or simply prolong his pain and suffering.

And then, just when you’ve made peace with one path, a new doctor or specialist walks in and offers a glimpse of hope. A possibility. A chance that maybe this procedure could help. Maybe it could reduce some of the suffering. Maybe it could improve his quality of life.

But then you’re left with unanswered questions. What does “quality of life” even mean for a child like Karson? How much improvement is enough to justify the risks? How do you measure hope against suffering? How do you weigh possibility against reality?

Most of all, why does that decision ultimately rest in the hands of another imperfect human being? An imperfect human who loves him more than words can describe, but who can never know with certainty whether she is making the right choice?

So I end this evening with cautious but grateful hope.

Hope that this procedure helps reduce the aspirations and give his lungs an opportunity to heal. Hope that it brings him some much needed relief after such a difficult few months. And hope that, for the first time in a while, breathing can simply be breathing and not another battle he has to fight. ❤️

06/13/2026

Update on Karson.

We are still in the hospital, still in PICU, with no plans of going home anytime soon.

Karson remains dependent on BiPAP 24/7. Every attempt to transition him back to high-flow oxygen causes his oxygen levels to drop dangerously low. His little body continues to fight, but it is tired.

The swelling has been significant. At one point, he retained so much fluid that you couldn’t distinguish where his legs ended and his feet began. The doctors started Lasix to help remove some of the excess fluid, which improved things temporarily, but he has begun retaining fluid again. He is also no longer able to empty his bladder on his own and requires straight catheterization every few hours.

These hospitalizations always happen fast and without warning.

In less than eight hours of this current one, Karson went from having no obvious signs that anything was wrong to running high fevers that wouldn’t break despite Tylenol, Motrin, and packing him with ice. His seizures increased, his heart rate climbed into tachycardia, he began aspirating despite aggressive respiratory treatments and suctioning, and he became profoundly lethargic.

By the time hospice recommended we come to the hospital, Karson was septic, had a UTI, and aspiration pneumonia in his lower left lung.

Everything changed in less than eight hours.

This is one of the hardest realities of NKH. Karson cannot tell us when something hurts, when he feels sick, or when something is wrong. By the time symptoms become visible, they are often severe, and what may begin as a routine day can become a medical emergency before we even have time to process what is happening.

Within 48 hours of admission, he tested positive for parainfluenza. A repeat chest X-ray showed aspiration pneumonia throughout both lungs despite broad-spectrum antibiotics already being used to treat the sepsis, UTI, and pneumonia.

For a day or two, it seemed like we were moving in the right direction.

Then yesterday, the fever returned.

Another chest X-ray revealed a new area of infection in his lungs.

He remains extremely lethargic, but every now and then, you can get glimpses of sweet boy. Last night, he held my finger tightly until he fell asleep. Every so often he would open his eyes just enough to make sure I was still there.

Those moments are everything.

As always, thank you for continuing to pray for Karson. Please pray for healing if healing is possible. Pray for comfort if it is not. Pray for strength, wisdom, and peace as we navigate whatever comes next.

And most of all, pray that Karson knows, every moment of every day, just how deeply he is loved.

06/05/2026

So much has changed since my last update, and honestly, that’s the reason for the lack of any.

Karson had a wonderful birthday surrounded by love, and for a little while, we were able to celebrate and enjoy those precious moments. But with his condition, things can change in an instant. He can be doing well one day and take a complete turn the next, with little to no warning.

Not long after his birthday, we spent nearly two months in the hospital. During that time, Karson coded multiple times and his health declined significantly. A few weeks ago, we were finally able to bring him home on hospice care. Now, we find ourselves back in the hospital once again.

As his Nana, my heart wants another miracle. I will never stop hoping for one. But more than anything, I pray for God’s will to be done. If another miracle isn’t meant for Karson, then I pray he is finally free from the pain, discomfort, and struggles he has endured throughout his sweet life.

So today, I’m asking for your prayers. Pray that God’s will be done for this precious boy. Pray for peace, comfort, and freedom for Karson. And if freedom can’t come for him here on earth, pray that he is welcomed into Heaven where there is no pain, no suffering, and no limitations.

If praying isn’t your thing, please send every good thought, positive vibe, and ounce of love you can toward this sweet boy who deserves so much more than this world has given him.

Thank you for loving Karson, praying for him, and walking this journey alongside us. Every prayer, every message, and every act of kindness is felt and appreciated more than you’ll ever know. ❤️

02/08/2026

02/08/2026

We finally got to celebrate Karson’s birthday today!

🦖 Roar, I’m FOUR! 🦖

A little Dino party for this mighty boy. 💚

The celebration was simple and sweet — but sweet boy is nothing short of extraordinary.

Happy Birthday, Karson. You are our bravest dinosaur. 🦕

01/30/2026

Look at that head control! Go Karson, go!

01/30/2026

This might look like a small moment to some, but for Karson, it’s huge.

This video shows Karson in his stander, holding his head up on his own — something he has never been able to do before. And when his head dropped, he didn’t give up… he picked it back up.

This is months and months of hard work paying off. The neck strength and head control he’s gaining may seem subtle, but for Karson, it’s life changing.

A simple reminder that miracles don’t always come loudly. Sometimes they come quietly, through strength, perseverance, and answered prayers.

We see you, big guy. 💙

01/28/2026

Happy 4th Birthday Karson!!