Rough Night

"Just try and catch me!" Kyle challenges Jake 
in a game during a break on one of our trips to Children's 

Since our last post Kyle has remained relatively stable. He has found ways to communicate with us through his own variation of sign language and spelling out words while we answer writing white boards. We have had fun visits with family and friends, taking walks on the unusually warm and sunny days of winter, and watching Kyle's WOW character (Kyliewylie) level up nearing 40. Kyle loves to play Shut the Box which his friend Andrea gave him for his birthday. And his has enjoyed playing games with many of his visitors, including a great night playing countless games of Farkle with Erin (his long time babysitter) and her friend Seth. 

Last Saturday night Kyle was the honorary coach for the Squallicum High School boys varsity basketball team. He met with the players in the locker room before the game, shared high-fives with the players as they checked in and out of the game, and shot a couple baskets on the shoulders of players (with a little help from the a few other teammates). There was even a rousing cheer of "OOO-UM-GOW-AH Kylie's got the POWA!" It was an exciting night that made us all feel great. 

Last night, however, we hit a road bump. Although we had a feeding tube placed for Kyle on Wednesday (for fluids and also to help him feel full after weeks of near constant requests for yogurt), Kyle was eating a little oatmeal, one of his new favorites when it is loaded up with brown sugar. He aspirated some of the oatmeal into his lungs and we took a ride to St. Joe's. Kyle was able to stabilize without any invasive measures. He has fluid in his lungs and we will watch him for any sign of pneumonia to set in over the next few days, but we were able to go home together. The meds are helping to keep his breathing near normal and he is able to rest and snuggle in the room we have plastered with all the cards and posters from his friends, classmates and supporters. 

We continue to marvel at Kyle's resolve. His strength in the face of this new struggle is an inspiration that today day a bit closer to manageable for all of us. Thank you for your thoughts and prayers for Kyle and the miracle we all desire.


Rachel said...

I'm so glad Kyle is back at home surrounded by so many loving people and the beautiful and cheerful room you have created for him. At this point, I'm sure "tired" doesn't even cover how you are feeling. Just know we're all behind you, cheering you on and loving you!
Love and hugs, Rachel

PS - Nicolas, I did have spiders in my dreams thanks to the Extreme Animals segment we saw. EEK! I told you - I'm a wimp about insects! ;)

Chaos and love said...

Postitive thoughts flow through me to you and your family. Your wonderous awe of your children is always apparent.

Hi Kyle! I love basketball. How much fun to coach the big guys. I am hoping for you to be feeling better, so you can play with your friends :)

My family and I think of you often. You are an inspiration.
Thank you
Carrie Brown
Happy Valley

Jill DeJong said...

You continue to amaze me with your strength and courage. I hope you know how much I love you and that I am cheering you on each day.

In my class today, one of my friends was reading a book about making paper airplanes. I told him about the cool project you did for the science fair when you were in my class. Remember how you and your dad made all those wonderful planes and tested to see how far they would fly? I am so lucky that I have so many special memories and stories to share about you with my new friends.

Stay strong, Kyle. There are so many of us here at Happy Valley who are sending you good thoughts!

I love you, lots!
Mrs. DeJong

conner said...

Hey Kyle -
We're so glad to hear you're back home and feeling a little better!

It sounds like being the honorary coach at Squalicum last weekend was super fun! I wish we could have been there to hear the OOO-UM-GOW-AH cheer for you.

Sending lots of hugs to you, your Mom and Niolas,

Cris, Erin, Conner & Colton Johnsen

Kathy said...

I'm so glad to know you are home and feeling better today and that you feel all the love that surrounds you. You are a beautiful, amazing boy that shines and shines. We send huge prayers to you and think of you every single day.

Kathy W

Jonesie said...

Hi Kylie,
My name is Henry Jones and your mom knows my mom (Cindee Jones). I think you are so cool, I hear about you from Jack and my mom. I hope you feel better really really really soon. That's so neat that you got to ride in the snow cat up at Mt. Baker.
Kylie's got the POWA!
Love, Henry Jones

haleyl25 said...

Hi Kylie and Christin,

Thank you so much for letting us visit today. If there ever was a boy who could beat this road bump, he's right there in your arms. Kyle, you are one tough kid and no one has to tell you that;) We love you all so much and our prayers just keep going...

Many hugs,
Carrie, Jason and kiddos

PS. Ava REALLY likes the bunny socks and was just tickled when I said who they were from:) Of course, I couldn't help but try to get Max to put them on first

joelle said...

Hi Kylie,
I am so glad you are home and feeling better - you just keep throwing those punches right back!
Lots of love to the whole family,

p.s. Recess Monkey says hi!

nmgeary said...


You absolutely blow me away with your fighting spirit. I am so humbled to know you and am grateful for what at 8 years old, the life lessons you have taught me and all the other adults in your life.

Christin-thank you so much for sharing Kyle's story with all of us. I am constantly thinking of all you and sending my thoughts and prayers your way.


.....I'll be up soon to reorganize some of those pantries....looking forward to it.

Megan H. said...

Hi kyle,
You're a awesome friend.Is easter(Your bunny)staying at your house now? Easter is so cute and soft. It was a sure wild day when the bunnies came in. Its cool that you have a 1000 and 500 dollar bill in your collection. You're rich! :) You have soooooo many pokemon cards! WOW! I like looking at them with you. Thanks for being my friend.
Megan H.