Super Caelen

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!

Merry Christmas from Super Caelen, Winter and Mom. We had a fun, but brief morning before Caelen jetted off to Maryland with his dad for two weeks.

Safe travels Caelen, and wishing all of our family and friends a very Happy Holiday Season.

Can’t forget the big guy too, Happy Birthday Jesus ❤️

It may have rained all day in Jupiter, but it was sunny in Pompano. 2 days before Christmas and he’s making sand angels and playing in the waves.

Exactly 1 year ago he was admitted to the hospital with a bone infection from his knee surgery. That led to a hellacious 2 weeks in the hospital and more surgeries.

So days like today make every rough day from the past fade even further away.

To top off the day, Caelen’s dutiful elves made their final appearance before they go back to the North Pole and get reassigned to a new family. Hope and Charlie, you were excellent elves, thanks for the laughs and Hijinx.

Merry Christmas Eve 🫶🏻❤️🎄🏖️

Thanksgiving recap from our crazy little family.

We had a fun day at Uncle Adam and Aunt Kelly’s playing on the farm. The food was delicious, the animals were adorable, and the humans were pretty funny too. Cold swim sessions in nice clothes, glow in the dark gel gun battles, late night confetti cannons, and 2:00 am hide and go seek in the dark rounded out the day.

Uncle Noah was here too but he escaped the camera.

Thanks Adam and Kelly for hosting again, and for cooking all of the yummy food. How lucky we are to have such a great family.

Happy Thanksgiving from Super C, who just saw his favorite buddy, Dr Fricker.

We are most grateful for good checkups, a strong, healthy heart, and most importantly - the gift of life 💚

Wishing all of you a Blessed day.

Happy Halloween from Boba Fett!

I did not get a single good picture of him in costume today, but that was a great thing. One of our friends got a good picture of him and his classmates at school, and three of his buddies joined him tonight in our neighborhood for trick-or-treating with their families. By the time I came back outside, they were all off and running and collecting candy.

What a fun year !

By direct request from the Bounty Hunter himself - Boba Fett wants to share a sneak preview of Halloween 🎃

Caelen decided he wanted to shave his hair off because he thinks it will avoid 5 months of hair cuts. So we took advantage of no school today with the great guys at Barbers Edge. I think he looks adorable with no hair, especially with the helmet he couldn’t get off his big noggin 😂

Always good to spend time with Joe Da Barber Alfano and his awesome crew.

This is also the first haircut that Caelen sat still for without a piece of technology or squirming. It took these guys years of patience, but it finally paid off. Thank you gentlemen for taking such kind care with the special needs community.

Not all heroes wear capes. Most have tattoos and ride motorcycles and drive fast cars.

Wow, where does the time go!? 14 years happened in the blink of an eye.

Yesterday Caelen celebrated his 14th birthday and I can’t believe how much he’s grown up. Even since transplant, the changes in his face and body are amazing.

Getting to share Caelen on his birthday was pretty special too. So glad he got to spend it with his family.

I thank God everyday for blessing me with that young man.

And without his hero heart, we wouldn’t get to celebrate days like this.

Speaking of, I finally sent in my letter to the donor family, I hope that they will accept it, and more importantly, I hope that they will respond. Their son is present in everything we do 💚🫀

Hello Friends!

Caelen had his 1 year cardiac cath with biopsy this morning. I just got back to the recovery area to see him and he’s sawing logs.

His pressures are good and no interventions were necessary to dilate or stent narrowing. The biopsy may be back as early as tonight, but likely tomorrow. The point of the cath was to check the pressures inside his heart and look for rejection via the biopsy.

He has 4 hours of flat time with the femoral access, so he’s got precedex on board to help keep him asleep. He already sat up once, Lord help me keep him calm and asleep in this bright and loud recovery unit.

I’ll update once the biopsy comes back, but we don’t anticipate any problems with his hero heart.

As always, thanks for all of the prayers 💚

One year ago today at 7:03 pm “the call” came in and it was real.

One year ago today at 9:15 pm I was signing consent forms and going over Caelen’s former difficulties with recovery.

One year ago today at 10:00 Caelen was getting his IV and singing up a profanity laced song of his own creation in honor of his hometown cardiologist.

One year ago today reality set in that transplant might be real, and fear and terror fought against prayer and hope.

Neither one of us slept, and when 6:00 am on May 5th rolled around, we were sitting in a chair watching the sunrise. Praying, crying and he was farting on me.

And I savored every last minute praying it wouldn’t be my last.

And at the same time one year ago today, a family said goodbye to their son.

Multiple surgeons and teams prepped, and the life saving journey would soon commence.

Thank you to Caelen’s donor and his family. Thank you for giving us this extra year. Thank you for the gift of life.

Tomorrow marks the 1 year anniversary of transplant, and I couldn’t be more grateful today than I was 364 days ago.

May the 4th be with you.

I’m so excited to share this news story about Caelen that was on the air yesterday.

Remember that Cardinals baseball game 2 weeks ago? While Caelen was getting treated to an amazing behind the scenes tour, he saw John Evenson, local CBS Sports Anchor, interviewing the Cardinals Shortstop Paul DeJong.

Caelen said to me, “watch this mom, when he finishes that interview I’m going to get on camera.” So when John and Paul were done, Caelen sauntered over and asked if he could be on camera. John told Caelen sure, and said they could do a practice interview. Next thing you know, John is interviewing Caelen and then decides to make a beautiful story about Caelen.

https://www.facebook.com/35996547940/posts/10160928855172941/?d=n

Thank you John, thank you Paul, thank you to Bethany White who works with the Cardinals, and set up the special tour for Caelen. Thank you to all the players and staff that made Caelen’s day so special. This was such a fun day and because of all of you, it is now preserved for Caelen.

And again, thanks to David Noble, the Cardinals SuperFan (and our new friend) who made this day happen. Without you, we never would’ve gotten to experience the magic of that day.

13 year old Jupiter boy is the Cardinals guest of honor after successful heart transplant The best way young Caelan Gorman could describe being the St. Louis Cardinals guest of honor at a recent Spring Training game was that, for once, life didn't th

Caelen got treated to a very special outing at St. Louis Cardinals game today. Not only did he get to go the game, but he got to watch batting practice from the field, go in the dugout, and then meet several players behind the stadium at their clubhouse!

He watched Paul DeJong get interviewed for the local news and decided he was going to be on camera as well 😆 He started interviewing Paul, got his autograph and then got interviewed himself. Stay tuned on that one.

Dylan Carlson came out and let him swing his bat, then gave him a pair of gloves. Juan Yepez joined him and they signed his ball.

We may have stalked Nolan Gorman due to his name - just had to get a picture - but Bethany with the Cardinals Organization, (and our most awesome Host for the day) found him and Brendan Donovan and brought them over to meet Caelen.

Their manager Ollie came out too, signed his ball, and then Caelen told him that he needs to get a drone so he can watch the guys play from the Bahamas, because the guy needs a break 🏝️ Caelen had Ollie laughing so hard.

All of the players, managers, and staff, especially Bethany, were so incredibly kind and humble. They were all engaging, asked and answered questions, and had such positive energy. Even watching the players with their fans, they made the time to stop, sign balls and engage. This is what baseball is all about, and they made a big fan out of Caelen today.

Caelen and I want to thank Jessica and Dave for creating such a magical day for Caelen. You both went above and beyond to set this up, and he is one very lucky boy to be surrounded by so much love. And I was one very lucky mama today to watch it all happen and share in the excitement. Thanks Jess and Dave ⚾️❤️

Friends, can I ask your help for a family friend of ours to get an adaptive bike? You can either vote for free, or make a donation if you are able to.

Noah is only 5, and like Caelen, he has battled far more than any child should ever have to. He recently lost the ability to walk, standup and move, but that shouldn't stop him from getting outside and go to the park. Let's help Noah improve his quality of life, and help his sweet mama too.

You can read more about his story, vote and/or donate in the link below. Thank you for anything that you are able to do.

https://www.greatbikegiveaway.com/seeNoahsmile?fbclid=IwAR0CLmEoU5lubwQy5dR32O147ECfWVvKa4588Uhx_ovIx3qJyfEuaVaSg7g

Patreka's Great Bike Giveaway Fundraising Page Every Kid Deserves A Bike! Give the same opportunity to a child with special needs that millions of children already have.  For the 10th consecutive year, Friendship Circle is holding the Great Bike Giveaway, an annual campaign that strives to provide as many bikes as possible to children and teens...

I forgot to update a few things recently.

1. We moved back to Jupiter 3 weeks ago
2. Caelen had the MRI on his knee 2 weeks ago and it shows the infection has cleared 🙌🏼
3. Caelen went back to in-person school this week, and I couldn’t have been more thrilled!! He loves his new school and has already made a friend.

I took a picture on Monday when I dropped him off, and shared it with my friend Lee at The Results Group. Being the creative guy that he is, he made us a fun picture of Caelen as Neo from the Matrix 😎

The pool picture is today after school, and he gave the week a big thumbs up.

It’s so good to be home in South Florida again, but we miss our friends in Gainesville terribly. Caelen still has to go up to Gainesville once a month for appointments so we will get a chance to see our friends often.

We hope that everybody has a great weekend!!

What a fun and fantastic weekend at the Family Heart Retreat at Camp Boggy Creek! We saw old friends, made new friends and had what Caelen calls “the best weekend all year. “

To all of our friends with special needs, if you haven’t been to one of their camps, please check out the Paul Newman Foundation and look for camps in your area. This is a truly free experience for families and such a blessing to experience.

Surgery is done. The Dr didn’t see any more infection, but she took cultures just in case.

She mentioned that he had a “pocket” just under the skin that’s allowing fluid to collect. There’s good healing tissue underneath there but it’s just not adhering to the skin, so she helped attach it and close that pocket. We are hoping that this is now the last step to recovery.

He does not have the wound vac, but he will be sporting the knee immobilizer again for 10 days. We follow up with her next Friday for dressing change and go from there.

And he’s home!!!

Thanks as always for keeping my baby so close in your hearts.

Stop me if you’ve heard this one before…

Caelen is getting that left knee cleaned out again and closed up. He saw ortho yesterday, and the wound isn’t closing in the middle, so the surgeon wanted to get him in asap and help his knee finally heal.

This surgery shouldn’t take long, and I’m praying that his recovery is easier this time. He will also get a preemptive nerve block before he leaves the OR to avoid the issues from the last surgery.

Who would’ve thought that a “simple knee surgery” would’ve become harder than transplant?!?

Please pray with me that this is Caelen’s last surgery for a while. He is very much “over all of this crap” and just wants to go home and stay home.

I’ll update later on. Thanks as always for your prayers and good vibes.

Home again 🧡💙

Caelen didn’t make it home today. When the orthopedic surgeon came in and examined him early this morning, she saw a little bit of oozing coming from the left knee incision. She believes that it is the antibiotic beads that she placed in his knees, and this is something that she warned me about last week.

She decided to place a wound VAC just to make sure that we’re taking all the necessary steps. It was just placed this evening and he is coming home tomorrow. Finally!!!

Oh, and if you’re wondering about the shell angel picture, that’s a magnet that was given to us 12 years ago by the Carpenter family. Winter has been incredibly destructive while Caelen has been hospitalized this trip, and each day that she gets left alone she destroys something else, even though we think that we got everything out of her reach, she continues to amaze 🤦🏻‍♀️

I will post an update once we are actually home 🙏🏼🧡💙