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

New home!!!

I am really excited to share that Caelen and I have moved into our new house! Like, over the moon excited!!!!  It's in Jupiter and is absolutely perfect for Caelen and I. We are a mile from my sister Jennifer, close to the beach and really close to C's pediatrician and therapies.  It's in a great little neighborhood with lots of kids and it has a very tropical feel.  The home is a 3 bed, 2.5 bath with a little courtyard in the back that I simply love. There is a front room that I've converted into Caelen's playroom, and it's awesome! Now, every single toy of his is now on display and out of boxes. Caelen gets his own room where he has a desk for school, his art on the walls, and his insane Disney Cars collection all in one place. 

This new home is also a place for us to start over again. It's a place for Caelen to live and thrive and grow, and a place for us to have a chance at normal life before the ugly face of CHD rears it's head, and calls us back to Philly. This home is Caelen's and my window to be peacefully happy before his heart fails. We are having fun everyday and making the most of them, doing the best we can to just be happy and healthy and do what's best for Caelen, until the time comes for transplant and the move to Philly becomes reality. But until then, we are going to enjoy our new home and find fun things to do each day.

I must say that Caelen and I are very blessed to be surrounded by so many amazing and caring friends.  But there is one in particular that I have an enormous amount of love and gratitude for, and that's Morgan Carpenter. She is my best friend in the world, and the single person I can't live without (next to C).  Morgan is a contractor by trade with Firstwater Building and Design in Boca, and she organized the whole renovation on my house, from 45 miles away.  She reached out to every one of her vendors and called in favors to give C and I the beautiful, clean home we are in today. This was no easy task, but every sub that worked on our house went above and beyond to help Caelen and I, and in the end, we are incredibly lucky and thankful to be here. 

But I can't start anywhere without bowing down to Morgan's husband Jason Carpenter. Without him we'd be nowhere. He was with me from demo through 10 weeks of construction, all on his days off. Between Morgan and Jason, I am eternally grateful for their friendship, and I can never repay either of them for all that they've done for Caelen and I. They are the epitome of love and true friends. Thank you both :)

So now it's time for my ❤️❤️ Thank You's.  I literally can't say enough thank you's to everyone that helped us out, we would never have been able to do this renovation without the awesome work of everyone below:

• Gary with Bath and Kitchen Creations
• Kyle with Building Art
• Pete from Stonemasters
• Roy from Sebastian Paint
• Kyle from Rob Flo Porcelain
• Bill from Marblelife
• Vivi from Napoli Granite
• Troy from Quality First A/C
• Dave from FL Builder Appliances
• Brad and Erik from Carpet Vault
• Rex from R & R Electric

Thank each and every one of you for your amazing work on our home. This is more than just a house for Caelen and I, this is our chance to have love, happiness and fun before the inevitable storm. 

With much love and gratitude,

Katye & Caelen

Quiet reflection time

We had an amazing day today thanks to Southwest Airlines, and a very special employee named Mr Chris Roth. Caelen and I were treated to a VIP day at Ft Lauderdale Airport, along with members of SW Airlines and a special, select crew from their ground team. I could go on and on about all of the amazing things that happened today, and I will in another blog, but what struck me most of all, was how blessed Caelen and I were today to be there.  This isn't just about the letter I wrote to SW, their marketing team following us with cameras, or the spectacular day that Caelen got to enjoy, it's about life and Caelen's journey.

I got to thinking tonight (always a dangerous thing), but I was reflecting back on the day and watching Caelen be a celebrity today, then the image from 4 yrs ago popped into my head...the day Caelen almost died (the first time).  I don't remember the exact date, it's not a day I celebrate or really care to remember. But it was a day in April, a day that I've tried to forget and block out of my memory. I'm not sure that I've ever really shared the details of that day/night, but here goes.

I knew that Caelen was sick, but no one in DC told me just how sick he truly was.  My dad was in town and we were on our way to the hospital, as usual. Something about that day wasn't right, and I told my dad I didn't want to stay long, which was weird.  I'd never not stayed the whole day.  

Caelen got worse, the docs appeared more often, and scary talk was commencing, but my nurse assured me that they were being dramatic.  I asked her, is Caelen so sick he's going to die?  She said, "no!"  And so I clung to that.  Then the Dr wanted to get an arterial line because Caelen was going south, but I said no, his perfusion was low and I was worried that an art line would cause his fingers to lose perfusion and he would lose the fingers/hand.  The nurse agreed with me.  Then the Dr pulled my dad and I into a private room, and I will never forget his words.  He sat me down in the private room, me facing the door, dad closest to the door facing me, and Dr B in between us looking at me.  He said, "do you know that your son is so sick he might die today?  Of the top 75 things wrong, the arterial line is the least of the worries."  I couldn't talk, I couldn't breathe, and I couldn't focus, I just cried. My dad, trying to restrain himself from killing the doctor for his harsh words, composed himself and asked questions, and Dr B answered them.  As much as my dad hated that Dr, I can only say of that moment, Dr B was the ONLY person to level with me and tell me the truth, Caelen was sick and was going to die today. 

I called Martin and told him to get to the hospital immediately. He arrived and we spent the next many hours praying, crying, planning and calling a small group of family and friends. Things went from bad to worse.  Our favorite night nurse, PJ came on and she fought like hell to keep Caelen with us.  Dad took the first shift with Caelen and PJ, promising to come wake Martin and I up in he family sleep room if something happened.  So off we went, pretending to sleep.  I never actually did get slumber that night, but I prayed harder than I ever had, prayed that Caelen could just make it through the night, prayers of mircaculous healing, and finally prayers of defeat...that if God was going to take my baby, that it be fast, painless and without fear for Caelen.  

With each prayer, I looked at the clock and watched the hours tick by, I was too scared to go back to Caelen's room. I knew that if something happened, the team knew where I was and would get me.  So I "hid" in this dark room full of parents pretending to sleep, silently crying and praying, until the morning came and I gathered the strength to go back.  Dad was still awake, talking with PJ, and Caelen was still alive. He made it through the night, and the team said that if he could do that, then he had a fighting chance. 

So he we are, 4 years later and Caelen is thriving.  Sure, his heart sucks and he needs a new one.  But it's not today, and for right now, we live each and every day trying to make him happy.  Caelen is surrounded by love and guardian angels. And while he may not exactly be on par with other healthy 5 year olds, he's doing amazing. For everything he's been through, Caelen shouldn't be here, especially without neurological defects, but he is, and he got to sit in a cockpit today, crawl in the belly of a 737 to move luggage, and push a plane 1/4 mile on a Tarmac, without me by his side.  And he said thank you to every single person he encountered today without my prompting.  So I think I'm pretty blessed to have such an amazing boy. 

Caelen is proof that miracles happen and prayer works. And while I still don't know how much time we have with him, I'm happy with the time that we're spending. 

Thank you to all that pray for Caelen, and thank you for praying him here to good health. 

Love,

Katye & Caelen

Little buddy

This one's for you Weston

I returned last night from Weston's memorial and celebration of life in Philly. It's hard to sum up all of the 24 hrs of my short trip, but if there is one word I could use, it would be Love. 

There was so much love for Weston, the Keetons and the staff on the 6th floor at CHOP.  Hundreds of people came to pay their respects to Julie and Adam on Wednesday night in their adopted hometown. Hundreds of people cried, laughed, and shared stories about the little 7 yr old boy that stole their hearts and changed their lives. And his Celebration of Life was just that, a beautiful celebration of the wonderous life of a precocious, funny and charming young man. 

I was sitting on the beach this morning reflecting on not just life since Sunday when Weston burst into Heaven, but life since Caelen and all of the other heart heroes we've met on our journey entered my life.  And as I sat there watching the waves roll, crest, break and repeat, I watched little children run into and away from the surf, giggling and screaming with delight. The surfers rode the waves, paddled back out and did it again. Beach goers fought the wind, and secured their towels on their own little spot of paradise on the sand. And what kept running through my mind was, life goes on. 

Life will go on for the Keeton Family. It'll be very different now, and I'm sure at times sadder, but they are a strong faith based family that is surrounded by love and God. And their new life will go on. 

Life will go on for the 6th floor at CHOP. New patients wil come, they will be treated and the amazing staff will do their best every single day. The doctors, nurses, therapists, front desk staff, everyone on that floor will never forget Weston. They will carry a piece of him in their hearts forever, and their lives will go on. 

It's hard not to think about Caelen in Weston's passing. It's hard to be a heart mom, or a parent of a special needs child during times like this, and not think about when God will call my child home. But what I learned from the Keetons is that life will in fact go on. I can't focus on what the future will brings. I need to focus on today and making each day the best that I can for Caelen. 

God sent Weston and Caelen and all of the other warriors here for a reason. Yes, they have to endure suffering, but they also give and receive tremendous amounts of love. They smile through the pain and procedures and they keep fighting because they want to be here, with us. They are here to love and be loved, teach and unite us.  And it was never more clear just how much Weston was LOVED, than to witness the events of the last week.  

So my life will go on. And while I may still tear up from time to time as I reflect back on his passing, I will remember that he is no longer in pain. He doesn't have to fight anymore. He can run and jump and play in the dirt in Heaven. He won't get winded, he won't get stuck on tubes and lines. He's flying free and high in the Kingdom now. And he would want people to be happy, not sad.  

All of our lives will go on, and we should make the most that we can with the time we're given.  

So I'm not going to say Goodbye to Weston, or rest in peace.  Instead, I say, see you again my little buddy. Play hard up there and get into lots of trouble. But most importantly, thank you for touching and changing my life. 

God Bless you Weston McKinley Keeton, and God Bless your amazing family and all those who have prayed for you. 

See you again my friend...

RSV...CICU ...Grateful

Where to start...Caelen spent 8 days in the CICU in Orlando last week for RSV and pneumonia.  That sucked!  We spent years, shots and a big co-pays protecting Caelen from RSV, and at the end of the day, it was as bad as we feared.  Thank goodness we're out now and healing. 

Instead of going back to Jupiter with my sister and her family, we've gone south to Boca Raton to live with my best friend Morgan Carpenter and her family. We needed to keep Caelen away from the pre-school germs for at least a month and give his lungs a chance to heal. So Morgan and her husband Jason were kind enough to take us in for a while. This comes down to my post: Grateful. 

I'm incredibly grateful that my sister Jen and her family have housed us for the last 3 months.  You can't ask for much more than to have our own room and a big space inside their play room.  But for now, we need to take a break. 

Morgan and Jason have 2 girls, Savannah and Grace, 9 year old twins. The girls finally got their wish this past summer in getting their own rooms. Then we came. Now the girls are not only sharing a room, they are sharing a bed.  I'm so incredibly grateful to the entire Carpenter Family for taking us in on such short notice, and especially to the girls for giving up on their own space so that Caelen and I could stay.  Caelen loves it here and he loves the time he gets with the girls, and of course with Aunt Momo and Uncle Jason.  They have always given Caelen extra attention and he thrives in their house. 

It takes a lot to take Caelen and I in. He has oxygen, 50' of tubing, breathing treatment vest and equipment, 23 meds, 3 different formulas for feeds, specialized milks for his feeds, and of course all the gear that goes with his g tube. We take up a lot of space. But Morgan and Jason didn't hesitate to offer us shelter, and shift their lives to give Caelen a safe place to recover. And for their family I am grateful.  

So I end tonight by simply saying thank you to everyone who continues to walk down this road with us. 

Love,

Katye & Caelen

Our year in review

Happy 2014!!!

What a year it's been! We started off with plastic bronchitis ruling our life and commanding many ER and hospital visits, let us not forget the helicopter ride:  Sorry Jordan Laycook for waking you, and sorry to the Hargroves for an impolite   ER passing, lol. 

But we had many more ups this year than down. Caelen fought hard against his plastic bronchitis, and me, and he's doing much better. As we sit, it's been a little over 2 months since he's had a cast.

He's adjusted really well to living in FL with his cousins and aunt and uncle, not to mention their 2 dogs that he loves to ride as if they were horses. He's ornery and argumentative, but smart and funny. The perfect dichotomy of a toddler. I love this kid. He tells me he loves me, but tells me stop singing (that hasn't changed).  He'll still a snuggle bug, so I hope that continues. He is the monkey that wakes me, the bratty toddler that tells me to go to sleep, and the light that keeps me going. 

We went to Disney and Epcot and Caelen had a blast.  He sat on Santas lap, that did NOT go well, but he did get everything he wanted for Christmas. 

Speaking of, this was the first year that Caelen finally "got" Christmas. Oh my goodnes. We've created a monster. He kept asking for more presents. In fact he keeps asking for more presents. This kid keeps me laughing every day. 

I know I'm redundant in thanking everyone, but seriously, Thank you everyone. With friends like Weston and Khloe still in the hospital, we pray for them daily, but we thank God that we are home today. 

We remember all too well what hospital life is like, so as you say a prayer for us, please also remember our ❤️ Heart friends. 

Many blessings for all of you in 2014!

Love,

Katye & Caelen

 

Merry Christmas Eve

Merry Christmas Eve to all of our friends. We just had a wonderful family dinner with our friends the Cohens again, and it was more reflective this time for me. 

Aside from all of the kids having a great time, and the adults laughing and telling stories, it was a chance to reminisce back to our childhood. Our family, along with the Cohens grew up together  playing soccer every Saturday for 16+ years. We had soccer parties, birthday parties, sleepovers, little Indian princesses, you name it. But we were always together. And every Christmas, Heather Cohen would come over to our house and spend Christmas Eve and day with us. 

And now here we are, with kids of our own, starting our own traditions and making new memories. It was very cool watching the next generation tonight playing with balls in the backyard and toys in the house. Exchanging presents and playing with the new gifts. Laughing, crying, screaming, fighting, all the kids creating noise. And Caelen and I get to be a part of it. 

I never dreamed 15 years ago that this is where we'd be. I didn't even dream 15 months ago that this is where we'd be. But I'm so glad to be here now. 

Merry Christmas to all, and to all of our prayer angels, we wish you a good night.

And a Happy Anniversary in Heaven to Grandma Doris and Grandpa Joe. 

Love,

Katye & Caelen

Crazy toddler

We're sitting in Too Jay's restaurant for dinner with Jen, Noah and kids, plus Noah's mom Joanne. We are the youngest table in here, which is good because the 3 kids are yapping and screaming and being "the kids in the restaurant you want to avoid."  My ears are ringing, the hand sanitizer is flowing as Caelen is touching EVERYTHING...and then I stopped freaking out about the noise, germs and bad children in the restaurant behavior because I realized, this is everything I prayed for last year. All of this, the good, the bad, the ill behaved. Every single second of it. Caelen is everything I dreamed and wished for, and he's here next to me, throwing Cheerios and saying  "mommy, mommy, mommy" times infinity. 

And I'm grateful. 

Happy Thanksgivukah

Happy Thanksgiving and Happy Chanukah friends.  We have so much to be thankful for this year. 

First, I'm grateful for all of the amazing doctors, nurses and staff at CHOP who saved Caelen's life last year. Getting to have more time with Caelen is a daily blessing, one that is not taken for granted. Caelen is the light of my life and he makes all the past struggles worth it. 

I'm also grateful for all of the friends and family that have walked this journey with us since Caelen's diagnosis four and a half years ago. We have met so many amazing people, new friends really, and our lives are fuller because of all of you. The heart community is a small one, but you've all become part of our circle. 

I'm grateful for our first Thanksgiving in Florida with family and friends. Caelen is adapting well and the weather is certainly helping his lungs. And sorry to our friends up north, but being able to wear flip flops and tank tops is a nice bonus too. Heard ya'll were a little chilly today ;)

And last but definitely not least, I'm Grateful to God for carrying me this far. Everything that we went through had to be done for me to see my own footprints again.   

And now on to the good stuff. To quote Caelen's favorite show, Yo Gabba Gabba, "I had a great time today!  But first, let's go back and remember what we did today."

Caelen and I joined my sister Jen, Noah, Lily and Baby James at the home of some of our oldest friends, The Cohens. There were 6 kids 4 and under, and it was controlled chaos. The kids were very entertaining and there were lots of laughs all around. Caelen enjoyed playing their piano while Lily sang crazy made up songs. 

Caelen even got his very first Chanukah gifts, so topping this Thanksgiving will be a little tough next year. Thanks Grandma Ellie and Heather, he held his presents the whole way home. 

And then of course the food was amazing. Grandma Ellie is a fantastic cook and I'm still stuffed. Thank you all for welcoming Caelen and I today 😊

Tomorrow starts Christmas insanity over here, so I need to start working on holiday cards. Speaking of, I cannot find my address list in the move, so if you'd like a card from Caelen please send me your address. 

Love,

Katye and Caelen

New Home - Florida!!!

We've had a lot going on in the last few months.  My sister Kelly got married in FL in September and Caelen was the ring bearer. ( I'm still waiting on pics from the photographer, so when they eventually become available, I'll share them here.)

Then when we got back to MD, Caelen had to go back to CHOP for 8 days to transition off of his lovenox, which was a blood thinning shot that he got twice a day, and onto Coumadin.  It took a little longer to get his INR levels right, but now we're done with the shots, thank God, and he just has to get stuck once a month to monitor his levels.  Once we got discharged, we had a week before the movers came to pack us up and move us to Florida.  The movers came on the 25th and Dad drove us home on the 26th.  Unfortunately, Caelen casted the whole drive, which was not fun, but he got them out and we arrived at my sister's home on Sunday afternoon.  Thankfully, he's been healthy and cast free since we arrived.

October was quite the whirlwind month for Caelen and I.  But we made it to FL just in time for Halloween and Caelen had a great time trick or treating with his cousins Lily and baby James.  He walked most of the night, and took a few breaks to ride in the wagon, but I was so proud of him for wearing his Planes costume and holding his treat bucket and asking for candy, and saying please and thank you.  What a difference a year makes when Caelen was riding the wagon in the CICU in his homemade Gabba costume (thanks Aunt Jen).

We're busy trying to get unpacked and settled into my sister and brother-in-law's house, where we'll stay for a while before we find a place of our own.  I'm in the process of enrolling Caelen into the special education program down here, as well as meeting new doctors and trying to find therapists.  But we did squeeze in some fun stuff this weekend.  Saturday was the Italian Festival in Jupiter and Jen, Noah and the kids and I all went.  Lots of food, way too much food in fact, but we all had a great time.  Caelen "won" a blow up sponge bob toy that he hasn't put down all week.  Lily rode the rides and James just chilled in his stroller.

Saturday afternoon Caelen took Lily for a cruise in his blue powerwheels, and that was an experience.  Caelen is becoming a pretty good driver, but when it was Lily's turn, she almost ran over Caelen.  But it was her first time driving, so we'll forgive her for that.

Sunday we all went to the green market in Palm Beach Gardens and sampled lots more food.  I bought too much produce that spoiled, note to self: just stick to the pastries and breads, the fresh produce wasn't so fresh.  Lily danced to the live music and Caelen walked around looking at all of the vegetables, not understanding why there were no toy cars to be bought there.  There was a also a firefighter fundraiser going on, and Caelen got to sit in a firetruck, the definite high-lite of his week!

We're looking forward to the next phase in our lives here in FL.  I'm sure we have lots of fun adventures ahead of here with friends and family, and I'll post updates when I remember.

And I need to say a huge thank you to my mom for flying up to help Caelen and I our last week in MD, my Dad for flying up to drive us home, and Jen and Noah for taking Caelen and I (and all of our crap) into their home, and giving us some time to get settled and look for a place of our own. Thank you to all of our friends in MD that helped us get here, and everyone that has prayed and keeps praying for us.  It's been a long year, but I'm excited for Caelen to grow and excel and get a chance at health and a more normal life.  Thank you all :)


Love, Katye and Caelen

Thank you!!!

Wow!!! The words "Thank You" seem to be an understatement when it comes to all of the donations you guys made for Caelen and Troy.  Together we raised $2,650 for Caelen and with help from Troy's friends and family, we raised a combined $6,320.  This is simply amazing and I'm so incredibly grateful to all of you for helping Caelen, Troy and other children suffering from congenital heart defects.

This is our very first fundraiser and I wasn't sure what to expect, but the outpouring of love for Caelen, Troy and our heart friends is overwhelming.  Thank you from the bottom of our hearts for donating, praying for, loving and helping Caelen.

I will be sending out individual thank you cards in the next few weeks to all that donated, but I just wanted to take a moment today to say Thank You.

Feeling blessed beyond belief :)

Love, Katye and Caelen

ECMO 1 year anniversary

Today marks one year since Caelen coded after his Fontan and went on ECMO  (heart/lung bypass machine) for life support.  This was by far the scariest day of our lives.  I've never shared photos before of Caelen on ECMO because even I didn't want to relive what had happened.  But one year later, I'm glad that I have the photos to see how far Caelen has come since those very dark hours.  Fair Warning, these pictures are hard to look at, so I don't blame you if you want to skip over them.

The first picture is of Caelen once he was on ECMO and cannulated through his neck, hence the scar on his jugular that some have noticed.  The second photo I hate, but I remember one of the medical team insisting we take the photo because I was so scared that Caelen was not going to come back from the OR.  Looking back, I'm glad she took the picture.  It shows just how scared Martin and I were, and the hell that we had all been through in the last 12 hours.  And the last photo was once Caelen had come back from the OR and cath lab, and the ECMO cannula had been moved out of his neck and into his chest.

And now here we are exactly one year later.  Caelen has traveled to Florida twice, even flying down one of the trips to be a ring bearer in my sister's wedding.  One year ago today, the future was scary.  We didn't know if Caelen even had a future.  And now he's running around the house, singing and dancing to country music, playing cars on the floor, couch, walls and any surface he can find.  He loves to go in the pool, ride his bikes and ride our dog Brid.  Caelen loves to give kisses and hugs, and is a great snuggler.  He's funny and smart as a whip, which gets him into trouble quite a bit.

Yes, one year ago these are all of the activities and traits that I couldn't fathom.  But by the Grace of God, Caelen's amazing medical team, and all of you that prayed for us and with us, we get to celebrate the miracle that is Caelen.  

Caelen and I were recently asked by our heart friend Troy Rice to help raise funds for the American Heart Association's Palm Beach Heart Walk tomorrow.  And seeing what a difference a year makes, we want to ensure that future generations of children, like Caelen, have the opportunity to live heart healthy lives.  Please help us make a difference in the lives of children with heart disease.  Congenital Heart Disease kills twice as many children every year as cancer. 

Please click the link below to make a donation, even $5 makes a difference.  

Caelen Gorman Palm Beach Heart Walk

And a huge heartfelt Thank You to all that have already donated for Caelen and Troy.  We've more than surpassed our goal and it shows me just how much you all love Caelen.  Thank you :)

With much love and gratitude to all who have walked this path with us and helped get us here today,

Katye & Caelen

Heart Friends

I am beyond sad tonight. We have lost 2 heart friends in 24 hours and my heart is breaking for their families.  Nothing can prepare you for the loss of a child, and having been close a few times with Caelen now, it just hits too close to home.  

I'm so grateful that Caelen is still here and thriving, but these losses are crushing. When anyone loses a child, you grieve. But when a heart friend loses a child, my whole world and every cell of my being weeps.  I'm reminded how cruel CHD's (congenital heart disease) are, and that we can't take anything for granted. 

So in tribute, here are our 2 newest Heart Angels.  Fly high James and Fly high George. 

James Roberts-Scichilone passed away yesterday at Boston Children's Hospital. He was a beautiful 1 year old who had just had his third open heart surgery. Two weeks ago he was playing at home in FL before he got rushed to Boston. His marathon surgery was Wednesday and after a difficult recovery, he suffered a massive stroke yesterday morning and he just couldn't stay any longer. He is survived by his amazing mom Mackenzie and his Dad Michael, as well as three older siblings. 

George Lagerstrom passed away this morning in his sleep at his family's cabin. He was 9 years old. We met George under the worst circumstances last fall at CHOP. He was also on ECMO after his surgery and had a very difficult path. It took a while, but George kept fighting, and fighting and fighting, until he made it back to a Minneapolis hospital on Feb 28.  George came home from the MN hospital on Mothers Day and thrived once home. He even got to go back to school recently. So although I don't know the details, I know that he had a great summer, was very happy, and was surrounded by his family when he passed. He is survived by his incredible mom Julie, Dad Ed and two older siblings. 

Scary Fact:

Did you know that twice as many children die every year from CHD than do childhood cancer. Why?  Because Childhood cancer is better known and better funded. What can you do?  Donate to The Children's heart foundation to fund research for pediatric congenital heart disease. Everyone likes a tax write off. 

Also, pleass pray for my friends and their families during the most awful of times. 

Rest in peace sweet little James, and May the Force be with you George. You've both forever stolen a piece of my heart and you will never be forgotten.  Fly high boys, Fly High!!!

 

Florida in July and Caelen turns 4!!

I am so far behind in my updates that I will just do one giant one that will cover our summer.

Florida
Caelen had a great time in FL in July.  We were back for our annual trip and Caelen had a blast playing with his cousin Lily and meeting his new cousin, Baby James.  We stayed with my sister Jennifer and her husband Noah and managed to drive them crazy.  But that's what family is for, right?  We got plenty of time in with Pop Pop (my dad) and Gigi too.  We even squeezed in some time with my best friends Morgan and Jason Carpenter down in Boca, and Uncle Jason took Caelen and I on a boat ride.  Caelen loved the boat and even got to help drive.

We spent lots of time at the pool and visited the turtles again at the Juno Beach Marine Sanctuary.  Caelen also loved playing in the backyard, be it sunny or rainy.  We filled our days with lots of outdoor playtime and errands.  Caelen has a new favorite store - Walmart.  Lord help me!  Good thing Walmart is not close by Annapolis, or I'd be in trouble.

Thanks Tara for the cool pool!

Hard to get shots of Caelen and Lily in close proximity.  But she acctually allowed Caelen to come snuggle before he acted up and she ran away.

Jen's boss Mr. Troy came by for a visit when we had to cancel visiting everyone at FP&L on a couple occasions.  Mr. Troy is also a heart warrior and has been praying for Caelen and keeping up through our blog.  He brought Caelen some early birthday gifts, all Monsters University, and as you can see from the pics Caelen loved them!  Thank you again Mr. Troy!  We promise to make a visit to FP&L next month to say thank you, hopefully we can feed the turtles too.

Uncle Jason taking us boating :)

Uncle Noah and Caelen playing "dolphin"

Caelen turns 4!!!
My baby isn't a baby anymore.  He's growing up so fast, I need to hit the pause button.  This has been a challenging year, but it's been a good year because Caelen is still here.  We came very close to losing him last year, and we've certainly had our struggles with his health since discharge in December.  But overall, Caelen is thriving.  He's talking up a storm, and he says the funniest things, like "aw shucks!"  He loves his country music, Yo Gabba Gabba, Daniel Tiger, Monsters, Cars and now Planes.  He makes me laugh and he just keeps amazing me every single day.  Caelen is the light of my life and I'm so incredibly blessed to have him here with me.

We had his 4th birthday party at the movie theater.  He wanted a Monsters birthday party but it wasn't playing anymore, so we invited all of our friends to watch Planes with us, and then have an awesome Monsters birthday cake afterwards.  Through the charity Icing Smiles, we were connected with a wonderful local baker named Pam Sargent.  She created this beautiful and delicious fantasy cake for Caelen.  The inside layers were all different colors and everyone had blue tongues afterwards.  I can't thank Icing Smiles and Pam Sargent enough for helping us bring Caelen's request for Monsters to life.

Thank You Steve Seamans for this pic of C

Nurse Amy cutting the cake

We had lots of friends join us, including a few heart friends that we've been close with along the way, and even one of our favorite nurses, Nurse Amy, that took care of Caelen from his 2nd day of life forward. Nurse Amy even cut the cake!  It was a beautiful sight to see her cutting cake for the heart kiddos that she once cared for when they were all critical at one point.  Watching our heart friends running around and playing was kind of like coming full circle.

Caelen had a great time at the party with all of our friends and keeps asking for another party.  He thinks every day is now his birthday, lol!

We are prepping to leave for FL next week for my sister Kelly's wedding where Caelen is going to be the ring bearer.  That should provide some good photos.  He's either going to get distracted and never make it down the aisle, get halfway down the aisle and cry, or never make it down at all.  But we keep practicing at home with Mimi.  I'll try and update while we're down there in September.

Thank you all again for all of your love, support and prayers.  4 is such a milestone considering his surgery last year, and we all feel very blessed to have each wonderfully crazy day with Caelen.


Love, Katye and Caelen