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

Cardiology clinic

We are just leaving CHOP for Caelen's clinic follow up. He had a blood draw, EKG and echo. All were good and we don't need to be seen again until October :)

We discussed the plastic bronchitis and transplant, and what Dr Rychik said is that we are taking a wait and see approach. He felt confident that we have attained a level of stability and the goal is to maintain it. If something starts to change, or the plastic bronchitis becomes a bigger problem, then those are the triggers that would precipitate the listing process for transplant. 

Overall, Dr Rychik and Katie Dodds were pleased with Caelen's health and his progress. We even got to visit a few of our favorite friends, Weston and Khloe, and both looked good. It was nice to be back at CHOP and see friends. 

On our way to CHOP with a blue Mohawk 

Clinic playing with his new favorite toy Mike from Monsters University. 

I know I haven't posted about our trip to Florida but i'll work on that. I've got to sort through photos and get them off the camera, but Caelen had a blast in FL and got in plenty of pool time. 

Thank you to all who keep Caelen and our heart warriors in your prayers :)

Love,

Katye