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