Karson Jax Updates

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!!

01/28/2026

After a year, we have finally managed to recover this page… and it just so happens to be Karson’s birthday!

Happy 4th Birthday to this precious miracle, Karson 💙
Against all odds, he is still here—and what an indescribable gift that is.

From his rare but oh so precious little babbles and sweet coos, finger grabs, quick glance to make sure someone is still near, fidgeting when his lights go off — all minor to most, but are oh so huge for him. One look into those bright, deep blue eyes stop us in our tracks every single time. He don’t even realize it, but he brings so much light, love, and purpose into our lives just by being him in his own very special way.

Watching the big boys love him, love on him, and include him without an ounce of resentment or jealousy, has been one of the greatest blessings of all. The bond they share is pure, protective, and unconditional.

Yes, our lives shifted. There’s been less sleep, less time, and more sacrifice than we ever imagined—but I wouldn’t trade a single moment of it. Not one. Every late night, every hard day, every adjustment has been worth it.

So today, I scream from the mountaintops.. HAPPY BIRTHDAY KARSON!! You are loved beyond measure, and today we celebrate YOU! 💙🎈🥳🎉

This is FOUR 💫

01/27/2024

Yelling from the mountain tops, HAPPY 2nd BIRTHDAY to Karson!

Karson is still in the hospital and will give an update soon but couldn’t let this moment pass without celebrating 2 years of life and love. This day wasn’t promised and life can change in an instant, but he made it to today and today we celebrate 💙

01/20/2024

Spreading more germs than smiles 😷

Last week started with a comical and copious amount of sickness. Kayden with influenza A, Karson with Rhinovirus, Mason with a lingering croupy cough, and Haley hospitalized with such severe dehydration from excessive vomiting they had to run IV’s through her feet. Karson was admitted to Children’s Healthcare last Monday and has remained here ever since. By Wednesday, his virus turned into pneumonia, causing cluster seizures of 7+ an hour, and his oxygen dropping to 70. After administering recovery meds, he’s been knocked out for the most part. Respiratory comes in every couple of hours to perform a deep suction which eventually irritated his airways causing them to bleed. After a few days, he was weaned off oxygen but unfortunately did not do well and his oxygen dropped again. He’ll remain on oxygen for the time being.

The greater the storm, the brighter the rainbow, right?

Please keep Karson in your thoughts and prayers as he fights off this pneumonia and his little lungs and airways heal, and please send all the germ free vibes our way to get everyone else to the finish line.

Even being in the hospital can’t contain this cuteness..

12/14/2023

I just wanted to share the most cutest picture you’ll probably see all day. The way my little brother loves and cares for Karson is just unreal. Hands down Karson has the best uncle around 👌🥰🥹

09/10/2023

Due to Karson being in NICU and on a ventilator the first few months of his life, we never were able to get any of the “typical” newborn pictures. We have scheduled many sessions since but always had to cancel due to either him in the hospital or just having a really tough day.

Yesterday, 19 months later, we finally were able to get some done. He had a pretty big seizure right before the session which exhausted him causing him to sleep right through but we finally got some 🤗

09/03/2023

So happy for Link Alucard Irvin! While our worlds were crashing with the diagnosis of Karson, we connected with Links mom, Ashley via one of the NKH support groups who just so happened to be in Egleston at the same time. Link was Eglestons first NKH and Karson their second. One day as Chelsea and I were leaving the hospital, Ashley and Ryan were coming in, and as we passed in the main entrance, we were able to meet in person and from that moment, Ashely was our lifeline for the months to follow. We are so grateful for knowing them and we are so happy and proud of Link 💙

2 years ago today our world came to a sudden stop and our hearts were breaking. 2 years ago today we discovered a rare genetic/metabolic condition we had no clue we carried. 2 years ago today we became family to an amazing group of people who supported us through everything. 2 years ago today we were told to prepare for the worst. 2 years ago today we were beginning to plan a memorial. 2 years ago today you fought with a fury and showed those who said you couldn't that you would. Now today you have made another show of just how determined and strong you are. Doctors said you needed a tracheostomy and there was no other way. They said you would ALWAYS need it. They said you would ALWAYS need a ventilator. They were WRONG because today you excelled and showed them your strength. You are now a trach free baby and doing AMAZING! We are so proud of you Link and are so excited to go on new adventures with you! We love you so much baby boy!!! Keep showing them just how strong you are!!!

07/17/2023

Sweet Karson has had a rough two weeks with a drastic increase of seizures. His recovery meds aren’t helping and his little body is exhausted from the amount of seizures he’s having daily. He is currently back in the hospital where they’re doing a klonopin bridge to try to reduce his seizures as we wait the results of his EEG.

Please pray for sweet Karson to get some relief and for this disease to stop wrecking havoc on his precious little body.