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