Super Caelen

Super Caelen Super Caelen was born with Hypoplastic Left Heart Syndrome, and received his Hero Heart in May 2022

We had the pleasure of attending an event today for Camp Boggy Creek at one of our favorite local restaurants Leftovers ...
06/08/2025

We had the pleasure of attending an event today for Camp Boggy Creek at one of our favorite local restaurants Leftovers Cafe. Nurse Mary, Caelen’s favorite volunteer invited us to join them and share a little bit about what makes camp so special. Caelenn got to take the microphone, his absolute favorite thing in the world, and share stories. And then he and Nurse Mary got into their usual shenanigans 🩷

When Caelen walked into the event, he immediately knew the race car, as well as the team. He met them last summer at camp, and surprisingly, they knew exactly who he was when he walked up. And even more fun is that they’re from Jupiter. So as often as they can, they load up their race car and trailer and drive three hours north to put smiles on campers faces.

If you don’t know what Camp Boggy Creek is, please visit their page and check them out. Founded by Paul Newman (salad dressing, lemonade, etc), it is a camp for special needs children that is supported by volunteer staff including medical personnel like nurses and doctors. This is a free camp that is funded entirely by donations, as well as proceeds from purchasing Paul Newman products.

Caelen is leaving for cardiac camp on Tuesday and he can’t wait to go back. He gets to be around other kids with heart disease just like him. These kids have all experienced surgeries, procedutes, tests, transplants, countless IV pokes, and so much more. And this is their opportunity to get a break from all of that, and be in a safe environment at sleep away camp, just like regular kids.

So please purchase Paul Newman products when you’re at the store, because Caelen is one of the kids that directly benefits from that purchase, along with thousands of other campers.

Caelen had his 3 year cath with biopsy today at UF. Everything was good with the cath and his pressures are the same as ...
06/06/2025

Caelen had his 3 year cath with biopsy today at UF. Everything was good with the cath and his pressures are the same as they were 2 years ago. The biopsy will take a few days, but the team isn’t anticipating any rejection.

It was a very long day, and today’s recovery was rougher than usual. So we did what we always do, visit Target and then Ford’s Garage for dinner.

This was Caelen’s last appointment at UF before his care is transitioned to Joe DiMaggio. It was sad knowing that we’re not going to see the team that saved his life anymore. We even ran into his surgeon, Dr. Bleiweis, in the hallway and gave him a big hug, and thanked him again for saving Caelen’s life. I can’t believe I forgot to get a picture of them together. Kicking myself now.

Thank you UF, thank you to the transplant team, thank you to Dr’s Fricker, Pietra, and all of the Nurse Practitioners that helped Caelen (and I) on the way. 4.5 years after driving up for the transplant evaluation, we will go home to Jupiter with Caelen’s still healthy and grateful heart.

And thanks to our village in Gainesville that took care of us and got us through. We love you all. Go Gators 🧡💙🐊

Blessed to spend Mother’s Day with Mimi and the cousins. Wishing a very Happy Mother’s Day to all the Super Mom’s, espec...
05/11/2025

Blessed to spend Mother’s Day with Mimi and the cousins.

Wishing a very Happy Mother’s Day to all the Super Mom’s, especially Caelen’s Donor’s mom 💐

Cinco de Hearto 💚♥️🫀Happy 3 year transplant anniversary Caelen! You are blessed my child with so many good things in you...
05/06/2025

Cinco de Hearto 💚♥️🫀

Happy 3 year transplant anniversary Caelen!

You are blessed my child with so many good things in your life, and today I am also blessed, and thankful to your donor and his family for giving you the gift of life.

Today we celebrated you with heart shaped donuts at school, heart shaped cookies, and bowling with your friends. And balloons, because who doesn’t love balloons? You did not appreciate the early morning wake up call from the dogs, but that’s just their way of saying happy anniversary. 

Forever grateful to the donor and his family. You remain in our hearts and prayers, and I hope that you found peace today. Thank you 💚

And without Caelen’s amazing transplant team at the University of Florida, and his rockstar cardiologist Dr David Drossner, none of this would be possible. Thank you for believing in us, thank you for seeing it through, thank you for saving him.

These pictures are from 4 days before Caelen got the call that a heart was available for him. Our good friend Paul Seama...
04/30/2025

These pictures are from 4 days before Caelen got the call that a heart was available for him.

Our good friend Paul Seaman came up to visit us in Gainesville and took us kayaking down the Itchetuknee River. The next day he carried Caelen down to Devil’s Millhopper sinkhole, and all the way back up.

We had no clue that life was about to change in the best way.

In 5 days it will be 3 years since Caelen got his new heart, and his second chance to live. Thank you to his donor and their family. I hope that one day we will get to meet ❤️

3 years ago I got the first call that a heart was available for Caelen, and that I needed to bring him to Shands at 5:00...
04/03/2025

3 years ago I got the first call that a heart was available for Caelen, and that I needed to bring him to Shands at 5:00 am to check in. That was a really long night, neither one of us slept, and there were a lot of tears.

My mom raced back from South Florida, and neighbors jumped in to help with the dog for what we thought would be a long journey.

The MRI that day showed that Caelen needed not just a heart, but the pulmonary arteries as well. So he was discharged and we went home and slept.

A lot more testing was done in the weeks that followed, and Caelen was put on “pause” on the transplant list until the team had a better understanding of what he truly needed for a successful outcome.

Then 1 month and 1 day later, the call that saved his life came.

The pics below are from that first “run-through” and just popped up in my memories. I’m grateful that I took them. I was trying to hold on to every last memory I could in case things didn’t go as planned. But, wow am I so grateful that they did 💚🧡💙

Sonic 3 on the iPad, on a music stand, while sitting in the hot tub. Sunday funday.
03/17/2025

Sonic 3 on the iPad, on a music stand, while sitting in the hot tub. Sunday funday.

02/09/2025

During The Big Game, we proudly bring awareness to organ, eye and tissue donation. Each day, 16 people pass away waiting for a lifesaving organ transplant. The Caesars Superdome in New Orleans, LA, holds 76,000 people. Currently, there are over 100,000 Americans on the national transplant waiting list. We have the power to . Register your decision to be an organ, eye and tissue donor today at RegisterMe.org 💙💚🏈

02/08/2025

Caelen had the best night tonight at the Tim Tebow Foundation Night to Shine. This was his first time going to Prom and let me tell you, he had a blast! He was invited by his friend Alessandro and they danced and sang the night away.

This was the 11th year for Tim Tebow’s foundation and they celebrated at over 800 churches tonight all around the world honoring kids with special needs. What an amazing foundation and such a beautiful way to celebrate God’s children.

Thank you to Generations Church for hosting, and of course to all of the awesome volunteers that make the kids feel so special - kings and queens. And huge appreciation to Tim Tebow, our fellow Gator 🐊 for bringing his vision to life and celebrating our warriors.

“Call me the next Gordon Ramsay.”Caelen is making cookies for the Thanksgiving potluck tomorrow at school. This is 100% ...
11/15/2024

“Call me the next Gordon Ramsay.”

Caelen is making cookies for the Thanksgiving potluck tomorrow at school. This is 100% his idea and his work, and I love it!

What’s been going on since we last posted? Life. Lots of life.

I don’t have to tell anyone that the teenage years are hard, and Caelen is living them up. I would also like to formally apologize to my parents for my teenage years 😬

He’s got great friends at school and really coming into his own. He knows more than me and says words that need adult translation. Skibidi toilet anybody?

His knees are doing great since the surgery and he loves walking - a lot! Maybe one day soon he will start running, wouldn’t that be amazing?!

His hero heart is still doing great 🙌🏼. Thank you to his donor and his family 🙏🏼 We still don’t know who they are, but I will write another letter soon to share with them. I hope that they will receive it.

His kidneys are being closely monitored, as he was recently diagnosed with stage 2 kidney disease. This isn’t that surprising given all that they have been put through the last 15 years, the goal now is to keep them at stage 2 and not let anything progress. He had a little scare last month when he got super puffy and was holding 10 lbs of fluid. Lots of panicked calls and appts later and his enalapril was doubled. That seems to be doing the trick, but he will have to be monitored monthly instead of bi-annually.

I’d rather have more vigilance than to let something sneak up on him.

I think that’s it for now. Life is busy and Caelen still keeps me on my toes. And for that I’m thankful, yes, even the teenage know-it-all eye rolls.

I hope everybody has a wonderful and safe Thanksgiving 🦃

Love,

Katye and Caelen

08/11/2024

Caelen just got home after his knee surgery last week, and the recovery at his dad’s place. This surgery was a repair and correction to his previous knee surgery in Dec 2022 that had the complications.

Caelen was at Joe DiMaggio Children’s Hospital this time and the team took a much more cautious approach, which led to a more successful surgery. And I’m happy to report that Caelen is no longer on pain medications. So far things seem to be going really well and we are prayerful that he will have no complications this time.

Caelen turns 15 next week and we will celebrate with a pizza party, so more photos to come.

Happy Sunday everybody, and to all the kids going back to school tomorrow, have a great first day! 

Happy Summer from Super C and his puppies. Wow it’s been a while since I’ve updated. Let’s start with the puppie(s). Ph...
07/27/2024

Happy Summer from Super C and his puppies.

Wow it’s been a while since I’ve updated.

Let’s start with the puppie(s). Phoebe Le Foof joined us on May 4 and has been keeping us busy. I forgot what it’s like to get a puppy at 8 weeks old. I’m exhausted and Caelen has claimed her as his puppy, and has given Winter (Storm Warning) back to me.

Caelen’s hero heart - it’s fantastic! He had his 2 year anniversary in May and celebrated with a party with his classmates.

June saw his 2nd summer camp at Camp Boggy Creek where he had a wonderful experience trying new things and making new friends.

July started off rough with the unexpected passing of my boss, Roger O Goldman, who was like a grandfather to Caelen, and a second dad to me. He’s the one who helped us find a transplant center after Philly denied Caelen, and not only encouraged me to go to Gainesville as soon as C was accepted into their program, but gave me the job security to move 3.5 hrs away while we waited for the new heart. Over the last 5 years, he was a HUGE part of our lives, and we miss him terribly.

During this time, Caelen went to MD for 3 weeks to be with his dad and sister Addison. From what I hear, he and his sister had loads of fun, and a bit of trouble too, like siblings should ❤️

This past week C went to photography camp and learned a new skill. The pic with the tortoise - Speedy - was taken by Covi Smith Campbell who ran the camp. He made new friends and I hope, found a new passion.

August 5 brings another surgery, his knees need to be operated on again to remove the 8 plate in his right knee, which is now straight, and place a new plate back in his left knee. If you recall back in Dec 2022, he had plates put in both knees and the left knee became severely infected, leading to a 2 week hospitalization over Christmas and New Year’s, and the removal of the left plate.

This surgery will be done at a different hospital with a highly skilled surgeon. More precautions are being taken before, during and after this surgery to hopefully avoid infection. He will be inpatient at least 48 hrs on IV antibiotics, and will come home on antibiotics to try and prevent infection.

And in mid August, Caelen will turn 15. Wow, time flies. He is a full on teenager, and has the attitude and behavior to go along with the age. Lord help us both survive these years 🤪

I hope that everyone has been enjoying their summer and finding time to relax with family and friends.

Have a great weekend!

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