Magic in Every Breath

Often, we fail to appreciate the things we've never had to do without. 

Until Ramsey, I don't think I stopped to consider the significance of every breath we take. When I was 5 months pregnant with him, we vacationed in Disney. Though I was fearful he'd never take a single breath on his own, I made a promise to return with him in 3 years.  In September, we fulfilled that promise with a celebration of his life at Disney World. 

Even though I never wanted to be that family wearing matching shirts, I couldn't think of a better reason to do so.  So, I designed T's for all the guys and girls.  The ladies and kids shirts had a silhouette of Ramsey holding a Mickey balloon and said "Magic in Every Breath". The men's shirts were simple stated, "Life is a Gift".  

It was a celebration worth repeating!!

Our group in front of Animal kingdom's "Tree of Life"

We Made It!

This weekend marked two celebrations for our boys.

Friday, Reed graduated from preschool and the ceremony was adorable. He and his classmates wore the cutest little caps and gowns. They sang and for the first time EVER, Reed sang on stage too. The students were each given an award and Reed won "Best Storyteller".  I wonder what kind of stories he's been sharing?

Reed and Carter...his first cousin/BFF

That's our boy up front :)

Ramsey says "CHEESE" with the graduates

All the moms got roses :)

Today, we finally made it to Jaxson's Jog. Jaxson's mom, Sarah, did an excellent job educating the runners and describing how it feels to have a child diagnosed with CDH. It wasn't easy but I fought back my tears. It was great to see Jaxson and another survivor, Caleb and their families. Both boys brought us hope during Ramsey's time in the NICU when they visited us. Seeing them together was priceless and I'm already looking forward to next year!

Jaxson's mom, Sarah, speaks to the crowd

Ramsey decides he wants to run, not walk

Ramsey seated with Jaxson and Caleb

"We walk for our survivor"

Life Through Ramsey's Eyes

I've been gently reminded (several times) by one of Ramsey's fellow CDH survivors, that I'm way overdue for an update. Raelyn, this blog's for you! The good news is; no news is good news.

This winter has been virtually uneventful when it comes to his health. He and big brother had a nasty case of Pink eye, and a cold or two…but that's it! No ER visits or asthma scares, life is good! His checkup and X-Ray at CHP also went well. We'll return this summer for his next checkup.

He also had a formal developmental evaluation as part of the DRHEAMS study we're enrolled in. The evaluation, called The Bayley III is a standardized assessment of motor, language, and cognitive development. I don't have the official results yet, but I was told that Ramsey did a bit above average except when it comes to speech. At this point, I'm not concerned about his speech. He could have the same issues even if he wasn't born with CDH. We'll give it a little time, and if we become concerned,  we can see if therapy is necessary.

I've been enjoying life through Ramsey's eyes.

I love watching him find joy in simple things. Like taking a bubble batch and letting the water drip slowly on his scarred belly. Like begging, "Cuckie, Cuckie, Cuckie" because he loves Oreos.

I love how he says "Cheese" with his eyes closed...

And watching him discover shadows puppets on the wall...

His puppy impersonations...

...come in handy when he needs to open his mouth for his first trip to the dentist...

 

He knows how to make a good old mess with ink....

...and mascara.

He loves to color and has the cutest crayon grip ever...

He enjoys movie time, and after two years, he's finally a cuddler!

He yells "Bye" when it's time to ride off on his horse...

And he still has a love for wearing toy kitchen tongs...

He has perfected the superhero run, and is soon to be featured as a Tiny Superhero. Thanks to them for this awesome cape :)

He's fascinated with the simple things and I'm fascinated with him. As he enjoys all of life's little moments, I can't help but think back on this big one....

...and I smile. He's come a long way.

Updates

Ramsey went from the fever/virus, to an ear infection, to two new teeth. Despite it all, he has been pretty pleasant as usual. I think the teething has been more bothersome to him than his other ailments. I am so happy that his appetite is back now that he is feeling better!

We continue to be touched by the donations we've received for the Ronald McDonald House Gift of Giving! We are so appreciative that many have stepped forward to help gather donations; we wouldn't be so successful without their assistance. To everyone that has helped or has donated, WE THANK YOU!  Visit the Gift of Giving page to see the latest count.

Smile!

I know I've mentioned it before, but there's just something about Ramsey's smile. I've heard many parents of CDH kids say the same thing. Recently, I came across a CDH survivor who not only shares that same bright smile, but she recreates them too. Laycee Renae Haines is an artist who puts a smile on the face of each subject, and each admirer of her artwork. Her mission? To make people happy! Laycee adds an extra-special touch to portraits of those who have joined their Father in Heaven- a bright yellow sun. Why you might ask? Because, Laycee says, "When you go to Heaven....you get a sun."

You can view Laycee's artwork at her Facebook page, Laycee Originals.  She would LOVE for you to "LIKE" her page and she especially enjoys fulfilling orders for portraits. I ordered portraits of Reed and Ramsey and they now decorate our once empty playroom walls! I smile each time I see them!

Laycee's artwork in her orthopedic surgeon's office

Reed's Portrait

Ramsey's Portrait

Here's Laycee's story as shared on her Facebook Page:

Laycee was born with a congenital diaphragmatic hernia (meaning her diaphragm did not form completely, allowing her organs, including her liver to move up into her chest). This particular defect occurs in approximately 1 out of every 2,500 births. Only 50% of infants born with CDH will survive to go home and, many of them will have health problems throughout their lives. Because of her CDH, Laycee's lungs did not develop and, in order to save her life, she was immediately placed on ECMO (a heart-lung bypass machine). She remained on ECMO for a total of 21 days. During that time her hernia was repaired and, unfortunately, she suffered a massive stroke destroying a large portion of the left side of her brain.

The prognosis for her neurological outcome was grim. One physician even went so far as to say, "She will just stare at the walls."

Laycee proved to be a fighter. She learned to walk and talk by the age of 3 and, with the help of a wonderful teacher, she learned to read. Her academic skills are limited; however, she has the confidence and the spirit of a lion.

Until approximately 2 years ago, Laycee could not write or draw. She performed most of her school work either on the computer or verbally. One day, she presented her Mom with a picture. It was a face....crude, but a face nonetheless. From that point on, her artistic endeavors took off. She began drawing everyone she knew and, with each portrait, her skills improved. At this time, Laycee has drawn over 300 portraits ~ all the same, yet different. She draws them according to specific information provided by the subject.

Her artwork is currently displayed in medical clinics throughout North Texas (including Wichita Falls, Grapevine, Fort Worth, and Dallas).

Please join us in celebrating this amazing person and her beautiful spirit. Although she has struggled with serious health issues since birth, she sees life through innocent eyes and with a pure soul.