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.