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"

Treat him like his brother

It has been a great summer; it's hard to believe that it's back to school time already. Reed began Kindergarten and Ramsey, well he wishes he did too. He longs to ride the bus and shouts out, "Me School, Meee Schoool!". Today, he even insisted on wearing a backpack like big-bro.

Poor Reed- look how scared :(
Ramsey is set. Backpack, check.
PJ's check. Bed-head, check.

Ramsey pouted as the bus drove away without him.

We met with Ramsey's surgeon and she gave us great news; she doesn't need to see him until next year...as in 12 entire months. Great, right? I bet you're jumping for joy. It IS good news, however, I liked those checkups. I liked the X-ray every 6 months that ensured me all his parts are still where they belong.

His Doctor went on to say I could treat Ramsey just like his big brother. That's great, but big brother doesn't have asthma, a crazy spinal anomaly, and the chance of reherniation. Small stuff compared to what he could be dealing with, still I worry. The truth is, I worry about his big brother now too. I do a better job at not sweating the small stuff, but I make up for it with my fear of the really big stuff...the stuff you never think could happen to you.

Ramsey is doing exceptionally well and I will never take that for granted.  Just look at him, he looks like he is ready for a marathon...

....OK, maybe he's almost ready ;) With determination like this, he has a great future ahead of him...

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"

Team Ramsey!

Who wants to join our team on May 25th for Jaxson's Jog, a run/walk benefitting Global CDH?

I've been trying to attend this walk for the last two years, and this year, I believe it will finally happen. Jaxson is a local CDH survivor who came to visit us with his mom, Sarah during Ramsey's NICU stay. I'm looking forward to walking at the event in honor of our super boys. If you would like to join us, please contact me.

Here are some details, but there are more online. We need 5 people to create a team.

Race Day Events

Jaxson’s Jog is on Saturday May 25 at North Park.
Race day registration and pre-registered check-in: 8:30 am – 9:45 am
Event starts at 10 am

1 Mile Walk – great for all fitness levels
5K Run – the course has a few gentle slopes and is an out and back
10K Run – a loop course run along the Lake at North Park

ADVANCE REGISTRATION FEES

Early registration pricing ends on May 10.

$20 for adult runners/walkers (18 or older)
$10 for youth runners/walkers (17 or younger)

AFTER MAY 10/EVENT DAY FEES ARE:

Adult runners/walkers (18 or older): $25
Youth runners/walkers (17 and younger): $15

Children 5 and under are free!

Our TinySuperhero

There's an awesome woman named Robyn who, with the help of her family, started TinySuperheroes. On her website Robyn states, "TinySuperheroes seeks to empower our little ones — one cape at a time. We donate capes to Extraordinary TinySuperheroes who exemplify strength and determination as they overcome great adversity. Once these Extraordinary TinySuperheroes are comfortable in their new capes, we feature them on our blog, in hopes of giving them a voice, their illness or disability a face, and the world the opportunity to stretch."

Visit the TinySuperheroes blog to read Robyn's take on our little hero. It's great to read his story from another's perspective and even better to raise awareness of CDH.

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.

Covered with Love

For Kate on her birthday...

Shortly after Ramsey's diagnosis, I viewed a story on the local news about an amazing woman named Kate Crawford. After the loss of her daughter Shannon, and the subsequent NICU stay of her three other children, Kate and some friends started Project Sweet Peas. Project Sweet Peas is a non-profit organization run by volunteers across the country, who through personal experience have become passionate about providing comfort to families with children in the intensive care units and to those who have experienced pregnancy and infant loss. Kate named her division after her daughter...Project Sweet Peas Shannon's Star. Shannon's Star works with Children's Hospital of Pittsburgh and Magee-Womens NICUs to provide their patients, and families with items to aid them throughout their stay.

Kate's project was especially touching to me since I knew we would be one of the families served by her project. What the news didn't mention, but I soon discovered, was that Kate's daughter Shannon died from CDH. A few days later, Kate and I spoke for the first time. I had so many questions for Kate, and she was eager to help in any way she could. It was comforting to have gained a local friend who understood the fear of what we faced.

After Ramsey's birth, and before I was even discharged from West Penn, Kate delivered one of Project Sweat Peas signature tote bags. The bag had hospital necessities like paper, pens, chapstick and lotion...but it was filled with more than just that. It was filled with love.  There was a frame painted by Kate that said "Sweet Pea" and had Ramsey's name painted on it. A wooden turquoise star, also handpainted, read "Ramsey, Strong Soldier" (the meaning of his middle name). Kate selected a beautiful handmade quilt just for Ramsey. The fabric was covered in ladybugs, which she shared, reminded her of her daughter Shannon. Shannon is one of the angels watching over him. I remember sitting by Ramsey's bed, when I couldn't hold him, and I couldn't yet cover him with it. So, I held it. I spread the small quilt over my legs and let it comfort me. I was covered with love.

Butterflies in memory of Shannon and a cute mask.

Ramsey: Strong Soldier

Now, it is our turn to cover Kate with love. Kate has faced the unimaginable in her young lifetime, and she is about to do it again. She was just diagnosed with breast cancer. She and her husband, Steve, who have grown so accustomed to helping others now need our help. Can you join me in praying for Kate and her family? Let's show her that her good deads have not gone unnoticed. Let's overwhelm her with prayer. Let's cover her with love.

Show your support to Kate and her family on their Facebook page!
Watch this great story on Kate!

Terrific Two's

Ramsey turned two on January 12! Like every day since we knew he was a survivor, we spent it feeling blessed and extremely thankful for both of our boys. Reed also had a birthday; he turned 5 on December 16. We celebrated their birthdays together this year, with a New Year's Day/Birthday Celebration.

A giant balloon "ball drop" was filled with candy surprises.

Grandparents (and Aunt Veta) having fun in their glasses LOL!

At a recent gathering (following my dear Aunt Doris's funeral), the boys had the chance to play a little basketball and to run to their hearts content. Surprisingly, all of that activity had little effect on Ramsey's breathing. Take that CDH and Asthma! To me, this picture taken that day says it all...there's nothing stopping our little guy! He's got high hopes...

He even got to meet his CDH supercousin, Tyler. Finally, the family hero's met!

Ramsey loves trying on everything in site. We're talking shoes, hats, gloves, headphones, safety goggle, and yes, even toy kitchen tongs.

We love our two terrific boys!