Timing

I know I haven't updated since FL GA Line concert, but those of you on FB have watched Caelen's updates, so I'm only partly behind.  Speaking of, if you haven't already seen, I created a FB page just for Caelen it's called Super Caelen, check it out: https://www.facebook.com/SuperCaelen

Faith

I'm a strong believer that everything happens for a reason, and everything happens when it's supposed to. You can't force things, and the more you try, the more the universe rebels against you. But when the timing is right, God and the Universe show you the most amazing opportunities. People come into your life when you need them most, especially when you need help, but just don't know how to go about it. 

Take for example my sister Jennifer's colleague, and now our good friend, Troy Rice. We met him almost 2 years ago visiting for the summer. He had heard about Caelen's struggles after Caelen's last surgery through Jen.  Troy came over to meet us, and a bond was formed, especially with Troy being an adult CHD survivor.  Troy asked us to fundraise with him for the American Heart Association Palm Beach Heart Walk, and the rest is history. 

Through Troy, we met Jennifer, Beth and Ashley at the AHA who asked us to speak with Troy in January at their CEO breakfast, where we met the Chairman of a local charity, amongst others. I've now been honored twice by the Palm Beach County AHA at luncheons where I've been able to share Caelen's story and spread awareness.  A ginormous thank you to all that have donated to the AHA on Caelen's behalf. It's because of your donations that Caelen and I have gotten to attend these AHA events. 

Fast forward to tonight, and Caelen and I were at a fundraiser for the local charity, Bellas's Angels, with that Chairman, and had the opportunity to speak again, and meet new friends, as well as to meet one very important person that can help Caelen with his education. 

Three weeks ago I felt I was going to have to fight another uphill battle with the   school board again.  And I'm not saying that it won't still be a battle, but tonight I met a person who can help facilitate the decisions for Caelen that will make our lives so much easier, and hopefully get Caelen the education he deserves. 

Life is all about timing, prayer and patience. There is always a plan, but you can't force it. And when you are ready to receive your guidance and gifts, God and the Universe open your eyes to them.

There are even more exciting things on the horizon for Super Caelen, including working with Make a Wish to hopefully get Caelen out to California to see Radiator Springs at Disneyland, but I can't reveal everything just yet.  Nothing is finalized and the Universe has some kinks to work out. But I promise to share once things are a go. 

I do however want to say a huge thank you to the friend who has been behind a lot of the awesome things hat Caelen has gotten to experience. I don't want to blow her cover yet, but she knows who she is. From the bottom of my heart, thank you, and we love you more than you will ever know. 

And just for good measure, here's some long overdue photos. 

Love,

Katye & Caelen

Florida Georgia Line

Last night Caelen was blessed with the opportunity to meet his favorite singers, Brian Kelley and Tyler Hubbard from the country band Florida Georgia Line. They were absolutely amazing, and so gracious with their time. Their team put us last in the meet and greet so we could spend a little extra hang time with them. Brian and Tyler signed Caelens guitar and offered to jam with him, but C was so nervous he wouldn't get off my shoulder. They tried talking to him and trying to coax him into interacting with us, but Caelen wouldn't budge. They tried so hard, and I've got nothing but gratitude and love for Brian and Tyler. They are seriously the nicest guys.

But come on, has anyone ever seen Caelen get stage fright??? He had so many questions to ask them, and he literally clammed up.  It was funny, but kind of disappointing for Caelen because I know how badly he wanted to talk to them and play guitars with them. There was so much I wanted to tell them about Caelen in our brief interaction before they went onstage, but I knew how busy they were, and already graced us with extra time. 

I just wish they could have known about how much time he's spent in the hospital, his struggles, his need for a new heart. But how his half a heart is full of love for FGL.  I wanted to tell them how their videos are the first thing Caelen plays every morning, and how he studies them to mimic their moves, and wears jeans every day because they wear them in their videos. How Caelen knows every word that every person speaks in all their behind the scenes videos of the making of the videos. And how Caelen sets up his toys on top of a big dump truck to recreate their This is how we roll video. How he sings their songs throughout the day, and when he doesnt want to do something in therapy, he breaks out some lyrics to distract the therapists, they're catching on to that by the way. Then before bed, he puts on his own music video and rocks out to their songs again. And how he so badly wants to watch them make a music video, and watch all the cameras, the actors, directors, and I can't forget big trucks. Maybe one day Caelen will get the chance again.

But overall, it was an absolutely amazing experience, and I can't thank Brian, Tyler and their team enough for giving us that gift.  Plus...they totally rocked it!! How lucky is Caelen that his first concert was FGL?  Mine was Paul Anka, thanks mom.

Aunt Kelly was thrilled to squeeze on Tyler's abs. No shame in her game. 

I should back up this story though with what I believe are once again, Angels among us. 

2 years ago yesterday, Caelen had his third open heart surgery, the Fontan, reversed or "taken down" after 3 miserable weeks of struggling and then the Plastic Bronchitis diagnosis, because his body simply couldn't handle the new circulation. He went down in the afternoon and I got to play "our song" to him, Blake Sheltons "God gave me you" which helps to calm him. The photo below is Caelen being wheeled back to the OR to have his Fontan taken down.

What we didn't know at the time was how rough the day would go. After the team was done in the cath lab, Caelen started desaturating and Dr Rome had to go right back in, basically doing a double cardiac catheterization. That was a long and crappy day and night. When I re-read that post from 2 years ago, I remembered the Angels God sent to us that night. If you get a chance, go back in the blog to http://caelengorman.blogspot.com/2012/10/post-cathglenn-tan.html 

Fast forward exactly 2 years, and Caelen got to go to his very first concert, and it was his favorite band. No way this was a coincidence. 

Here's where the Angels come in to play. It took a small army of angels to make yesterday happen, starting with one of our local Fire Captains, Michelle Martin, who got the ball rolling by making calls to figure out how to get Caelen to meet FGL. 

Captain Martin, God Bless you for working so hard to make yesterday happen. Your big heart led you to Tara, who called her friend and local DJ Virginia, who called DJ Sammy over at WIRK, our country station. Sammy called FGL's "people" (ha  ha, don't you wish you had "people") and together, they scored us a meet and greet with not just FGL, but Jason Aldean too!  Plus tickets to the sold out show!!!

Full disclosure, I'm not entirely sure that's how things went down, but I *think* I'm close. 

I just want to say a gigantically HUGE Thank You to Captain Martin, Tara, Virginia, Sammy, Stacey (FGL) and of course to Brian and Tyler themselves. Thank you for making one of my miracle boy's dreams come true. Even though Caelen got suddenly shy, he hasn't stopped talking about meeting Tyler and Brian, and telling everyone he has encountered today. He's still singing and playing his now very special signed guitar, and rocking out to all of the FGL videos. We're still exclusively playing FGL in the car, even though I asked today if we could take a break and hear some different groups. That answer was No!  But that's ok, after yesterday, FGL can continue to be the first and last thing we hear every day 😄

Rocking out while waiting to meet FGL

"This is how we roll"...get your hands up Aunt Kelly!!!

Signed by Brian and Tyler, and Jason Aldean

Sammy from WIRK

Caelen playing "Get your shine on" along with FGL

Singing along to "Dirt" with his SW Air headphones

From the bottom of my overflowing heart, thank you to all of the Angels among us who continue to bless Caelen every day.

Love,

Katye and Caelen 

Heart Walk tomorrow - please donate

Tomorrow we walk for the American Heart Association, Caelen and all of our heart warrior friends. We are $875 short of our goal, sooo close!  I'm putting out a last minute request to try and reach our goal. 

2 years ago today Caelen was struggling after his third open heart surgery, and ultimately crashed in the early morning hours of September 27, spending 5 days on ECMO. Reliving those vivid memories is heartbreaking. But because of amazing doctors and nurses, and advancements in medical technology through fundraising for the AHA, Caelen is still here, and now a VIP walker tomorrow. This is why this fundraiser is so important to us. 

I know that many of us are strapped financially, and there are many good causes to donate to right now. But if you are able, please help Caelen reach his goal. 

And Thank you again to all that have donated already and gotten us so close to our goal. We are so appreciative for your help. 

Caelen's dad Martin has played a big part in our fundraiser this year, and his help with his friends and colleagues has been tremendous.  Thank you Martin for being such a huge help!

http://palmbeachheartwalk.kintera.org/faf/search/searchTeamPart.asp?ievent=1090345&lis=1&kntae1090345=DFE56E6FE517456E9A30FD62D06B1E8B&supId=0&team=5963137&cj=Y

Thank you all,

Katye and Caelen

2014 Heart Walk

Hello all,
It's that time of year again, the annual Palm Beach Heart Walk benefiting the American Heart Association. I've been fundraising for a few weeks now via emails, Facebook and social media, but just realized I never updated the blog.  Oops...but there's still time.  9 days left until Caelen, Troy, friends and family walk in West Palm.  Caelen's beautiful mug is even going to be on a banner this year at the walk :)

Our goal is to raise $10,000 this year between Troy and Caelen, and we are so close!  Out of all the teams walking, we are in the top 4 with only 9 days to go, thanks to all of the wonderful friends that have donated!  All funds raised by Troy and Caelen are going directly to pediatric congenital heart defects research, so we can continue to help Caelen and many others like him.

http://palmbeachheartwalk.kintera.org/faf/donorReg/donorPledge.asp?ievent=1090345&lis=1&kntae1090345=1D3F3E7347F147F48FE4DA827AA6FE99&supId=262299943

Originally Troy and I decided just to fundraise off of his page, but there was some confusion, and donations have been made to his page, Caelen's page, and our general team page.  But it's all good, all money donated to our team, Bravehearted, goes towards our $10,000 goal.  Please help if you are able to.  No amount is too big or too small.  And if you prefer to write a check, there is an option to print the form (once you click the Give Now button on the upper right), or I can email you the form.

Thank you to all who have already donated, thank you cards are slowly being mailed out.  I will get to the rest after Disney.  I'm taking Caelen up for the day tomorrow to give him a break from all the therapies and doctor appointments.  Hopefully cooperate and I'll get some good pics of him.

Love, Katye and Caelen

Celebrating 5 with a cover story

There is so much good going on right now that I have to try and contain my excitement in this blog.  I will try and minimize additional exclamation points, but it's going to be hard....cause I'm so excited!!!!!

First off, Caelen is doing really well!! His heart function is good, his labs are good and his chest xray is good.  His favorite thing to do now, aside from playing with his Disney cars and playsets, is to sing, dance and play guitar to country music videos.  His favorites are all videos by Florida Georgia Line.  He especially likes watching the behind the scenes making of the videos, and says that he wants to go watch them film their next video.  Gotta hand it to him, he dreams big!  Anyone have any connections with FL GA Line???

He had a small cold again that led to a week of casting, but he got through it and was healthy by his birthday last Sunday...That's right, my miracle boy hit a major milestone and turned 5!  It may seem small to some, but for those that have followed his story from the beginning, you know how much he has fought to get here, and I'm so proud of him.  He got way too many gifts from family, typical, and we will hold his party tomorrow.  Once again the charity Icing Smiles is donating Caelen's birthday cake, and this year he has chosen a How to Train your Dragon theme.  I'll post pics after the party tomorrow.

Now, on the the good stuff!

Several weeks ago, Caelen and I were interviewed for a story in our local newspaper, The Jupiter Courier.  It was a great opportunity to tell Caelen's story and spread awareness about CHD's (congenital heart defects) and organ donation.  Little did I know that we would be the cover story!!!!

Please read the story here and share with your friends.  Jupiter Courier Caelen Gorman

We are trying to get Caelen's story to go viral so we can raise awarenss for CHD's and organ donation.  Here's just a few facts about Congenital Heart Defects:

• CHD's are the number 1 birth defect worldwide, 40,000 are born each year in the US alone
• There are more than 40 types of CHD's
• Twice as many children die from CHD's each year than from all forms of pediatric cancer combined
• Only a fraction of a penny spent by the government on medical research goes to CHD's
• There is no cure
• Click here to become an organ donor: Organ Donor

Thank you to our great friend Kim Barnes for sharing Caelen's story with local photographer and reporter, Lori Griffith (Chasin a Dream Photography/) who has now become a dear friend.  If it wasn't for Kim telling Lori about Caelen, none of this would have happened.  So a tremendous thank you to Kim Barnes :)

I spent an aggressive day yesterday bombarding facebook with links to Caelen's story, and thank you to ALL who have posted and shared the link.  We were even shared by the American Heart Association of Palm Beach on their social media sites yesterday.  I ask everyone reading this, please share Caelen's story with all the outlets you can.  You never know who is watching and will pick this up and take it national.

Palm Beach heart walk
Caelen and I will be teaming up with our Heart Buddy Troy Rice again this year for the American Heart Association Palm Beach Heart walk.  Our fundraising page will be going up in the next few weeks and I'll share that here once it's live.  Last year, Troy and Caelen raised the most money of any non-sponsored team. And they did this in about 3 weeks.  So this year I want to start early, and double their success of last year.  The photo below was taken by Lori Griffith with Chasin a Dream Photography.

I think that's it for now, but with each passing minute, Caelen's story is gaining traction.  So back to my social media blitz.  And thank you all again for continuing to support Caelen and I.

Love, Katye and Caelen

Why I'm a germaphobe

There's been a lot of flack lately online about moms bubble wrapping their kids, and keeping them isolated from germs, thereby creating an even bigger danger to their children when they do get sick. To those moms that have children with healthy enough immune systems, and that are able to safely expose your kids...kudos to you!  You've certainly got an immuno healthy (normal) child that gets to grow up going to preschool, eating dirt, touching doorknobs and everything in between. Your child can go to any birthday party, even at the crazy cool indoor bounce house of fun where they rarely sanitize surfaces. Even if your child gets sick, he or she will quickly get over it, and life, if it was interrupted, will go back to normal. 

I don't live that life. Caelen doesn't get to live that life. Once again, even the smallest of colds, aggravates his plastic bronchitis and he's struggling to breathe comfortably. 

This is why I'm a germaphobe. I have to be. In order to keep my half hearted immuno compromised child safe, I have to clean, sanitize, wash everything, and constantly keep an eye on what he touches when we're out in public. Think it's fun constantly telling your child, "don't touch that, get that out of your mouth, clean your hands!" How I long to be the mom that let's her kid be normal. 

Instead I'm up late again, fighting Caelen's plastic bronchitis because I let my guard down at the grocery store, and let him be a kid. I let him push the cart, I let him touch things because it's summer, and germs aren't as bad in the summer, right?  Now here I am, 3 nights in a row, watching him work to breathe, doing nebulizers and chest pt while he sleeps, and waking him to cough up pieces of the casts.  Each time his breathing gets better, till the casts form again. All the while, Caelen somehow let's me do all these horrible things to him to try and ease his breathing. He cries, holds his breath, turns blue, and coughs. Then he forgives me. Every time. I tell him that I'm sorry and I love him. And he tells me, "thank you for rescuing me," then falls back asleep to chest percussion.  My sweet boy doesn't deserve this. 

So for all of those that think I'm crazy for being a germaphobe, or have wondered why I'm so anal about germs and Caelen, walk a mile in my shoes. Then maybe you'll understand that a simple cold will never be simple to Caelen, or other immuno compromised children.

To those who either get it, or don't but pretend to...Thank you. Being able to have a safe group of friends who still invite us, and tell us when someone may be sick, helps us have more of a normal life. We don't want to live in a bubble, we want to be out too, just like the rest of you. So when friends respect Caelen and his health, it gives me peace of mind. 

And to all those that have been involved in the recent drama...let it go. At the end of the day, we're all moms to special needs children, and that's where our focus should lie, not on tearing each other down. Germaphobe or not, we need to respect each other. 

Casting on anniversaries

I sometimes hate that I'm a night owl. That's when I'm most creative and at the same time, most reflective. There's been a lot on my mind lately with Caelen catching a cold and it turning into casting in his lungs. 

The last two nights have been really hard with the casting, coming off of two rough tights with the cold/fever.  But last night was particularly rough, with me up all night giving Caelen breathing treatments and chest pt. I prayed to everyone up there: God, Jesus, Mother Mary, St Madeline Cope, St Jude. And then of course to our regulars: Aunt Marlene, Uncle Mike, Weston, James and all of our angels up in Heaven, please help Caelen clear this cast safely. Please make the casts stop. Please stop this awful disease.  It was a long night, but he got through. And this morning he was his usual chipper self. 

The day progressed and he was still casting. I was in contact with CHOP and we decided to start a short dose steroid.  Then I prayed again, and then the tears flowed. It was probably the lack of sleep compounded with the worry that we were going to have to go inpatient down in Miami. Then a friend texted that "Caelen will be fine."  This friend does't really understand Caelen or our situation, and I got really upset at such a dismissive remark when my child was so sick.  But then something happened. The rain and thunder came and I told Caelen we were leaving.  So off we went in the rain, and we got the meds, and we ran errands, and I kept C mobile all day. I was trying every which way to clear that cast.

All the while, I was aware that today (well yesterday) was the first anniversary of Uncle Mike's passing. 

Tonight at bedtime, Caelen's sats miraculously improved. I'm sure the steroid and breathing treatments helped, but as we said our prayers, there was extra emphasis for Uncle Mike and Aunt Marlene and Weston. I prayed so hard last night that they please help Caelen, and felt so defeated when he didn't improve. But now I realize that they were listening, all of them, helping throughout the night and day, drying my tears and calming my fears.  They were right, Caelen will be fine. And he's got guardian angels protecting him.  

Thank you Uncle Mike, Aunt Marlene, Weston and all of our guardian angels in Heaven. 

Love,

Katye & Caelen