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