National Wear Red Day

Friday is National Wear Red Day. Every year I ask you to wear red to support Lydia and the fight against heart disease. This year I ask you to wear red for Henry. Henry is our heart warrior friend that left us too soon when he passed away January 24th at the age of 4.

On the first Friday of every February, which is designated as American Heart Month, the nation comes together, igniting a wave of red from coast to coast. From landmarks to news anchors and neighborhoods to online communities; this annual groundswell unites millions of people for a common goal: the eradication of heart disease and stroke.

Henry's heart is whole again.

Henry Caudle, of Topeka, passed away on Thursday, January 24, 2019. He was four years old. 

Henry was born January 1, 2015, at Children’s Mercy Hospital in Kansas City, Missouri. Before he was born, he was diagnosed with a severe congenital heart defect, Hypoplastic Left Heart Syndrome, HLHS. Despite having only half of a heart, no child loved more fully then Henry. Despite three heart surgeries before he was three and a half, he always enjoyed the company of those around him. He was always ready to greet his family, friends, classmates, nurses, and doctors with a hug and a laugh. 

Like any four year old, his joys were simple. He enjoyed being read stories, especially Pete the Cat; he loved watching his favorite cartoon, PAW Patrol; he loved playing games like Connect 4; he was great at doing jigsaw puzzles; and, he loved going out to eat, because it meant seeing more places and meeting new people. Once he was comfortable in a room, he would immediately become the center of attention. 

Perhaps Henry’s favorite thing to do was to swing. If he managed to convince you to push him on a swing, you were likely to be there for half an hour - or more, if you let him. It was likely the small, infant swing he used in the ICU that formed his love of swings, but whatever it was, they brought him such joy and comfort. In Henry’s honor, memorial contributions may be made at CoreFirst Bank & Trust, to be donated to the Topeka & Shawnee County Parks & Recreation to build or maintain swing sets in the city for other children to enjoy. 

Henry is survived by his parents, Paige and Jason Caudle, and his cat, Lily; grandparents, Pam and Dean Hatfield; great-grandmother, Glenna Hatfield; aunt, Mallory (John) McDaniel; cousins, Loren (Megan) McDaniel, Hunter McDaniel, Gunner McDaniel, and Blakley McDaniel; and many wonderful great aunts and 
uncles.

He was preceded in death by his grandparents, Diane and James Caudle.

A celebration of life will be held 3:00 p.m. Saturday, February 2, 2019 at First Congregational Church, 1701 SW Collins, Topeka, Kansas 66604. 

Memorial contributions may also be made in his name to any of the fabulous organizations who helped us in Henry’s journey: TARC Tiny-K program, TDC Learning Centers, Sister-by-Heart, the Ronald McDonald House Charities, or Children’s Mercy Hospital. 

To learn more about Henry’s life and journey, please visit fellowshipofthecaudles.blogspot.com 

Henry’s light shone briefly, but brightly, searing himself into the memories of all who knew him. Henry, we love you. Always.

The longest walk home.

There is a family with a heart baby.  They started their journey about 6 months before us.  Soon after we received news of Lydia's condition, I happened upon their blog via twitter.  I knew them in college and found them again at the exact time I needed them.  The day their son graduated out of the PICU was the day Lydia had her first open heart surgery and entered the PICU.  She stayed in his room.  We never saw each other during our shared time at the hospital.  I never connected with her until after they had gone home.  Since then we've connected over so many things and so often.  

We are heart moms.  We have heart babies.  We are heart friends. 

Yesterday they faced their worst fears.  

Their baby passed away and is now in Heaven.

I cannot begin to describe my emotions and reaction to this news and it's only a fraction, a sliver of what they are feeling.  It's not even comparable or on the same grid.  It's unreal to feel the connection I feel to them right now with this news.  I don't ever want to forget that sweet little face that I looked forward to seeing at the Run For Little Hearts 5k every summer.  There is a summer camp for heart kiddos and I thought we'd be dropping our children off together in a couple of years.   

You are in every thought, every prayer and every tear.  

Gotta get out of this place!

We don't let the freezing temperatures and blustery winds keep us indoors!

Under the Weather and Over the Mercury

Day One: Wednesday the 9th.  102.1. 2.5 hour nap.

Day Two: Thursday the 10th. 101.1. 1 hour nap.

Day Three: Friday the 11th.  Normal Temp. 4 hour nap.

Day Four: Saturday the 12th. 103.6 WOW! 4 hour nap.

Day Five: Sunday the 13th. 102.2. 7.5 hour nap.

Day Six: Monday the 14th. Normal Temp. 

We had a sicko on our hands for an entire week.  It all started on Wednesday the 9th and isn't really over because we're battling earaches.  We think it was the flu, despite the flu shot.  On and off high fevers, no appetite, dry cough and very tired and lethargic...so tired and lethargic that she took 4-7 hour naps every day and went to bed early or on time.  Lydia came home from school early on the 9th and didn't return to school until the 18th.  She had a couple trips to Hy-Vee and the doctor, otherwise she stayed put...indoors, no playing in the snow for her.  I've since disinfected the entire house a couple of times and still feel it needs a good airing out.  Crossing our fingers we don't get hit with another bug like this one.  

Happy 2019!

Lydia requested a Happy Meal for dinner.

Then we played dress up awhile.

We fixed some late night snacks for mommy and daddy.

We "Happy New Year'd" at about 7:30!

Christmas Time Is Here

Cookie Day #2 or #3...we don't even know!

We have been making these sugar cookies since before I was thought of.  My Mom and Aunt had cookie day with Grandma Helen Rose and Great Grandma Rose when they were young.

Christmas Eve Mass at St. Joseph in Shawnee, KS.  

This was the first Mass since the remodel.  

I'm happy that the church still looks like the church I grew up in, just better!

 

Christmas Eve dinner and presents with MaMa and PaPa Krupich!

Santa Be Comin'!

Lydia received a balance bike, helmet and magnatiles.

Christmas Morning at home!

Christmas Day dinner and presents with Nana and Papa Riggs!

Christmas Night with the Cunningham's!

We played reindeer games and drank reinbeer!

The Krupich Girls and Brian came to town.  We saw Christmas Lights at Deanna Rose and the Victorian Neighborhood.  Finished the night with milk and cookies!

Oven Mitt Game with way too much tape this year!  

Leah was the winner!  Lydia checked out.

Presents!