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!

 

It's about Sharing

On thursday we played Santa as we delivered roughly 200 toys to Children's Hospital of Pittsburgh on behalf of Rooting for a Reason.  We owe this to the generous individuals and businesses who came together to bring smiles to patients this Christmas! Thanks to everyone who sent their toys to me, to Liz McNulty, and to our drop off sites at Studio 2 Advertising, Aw Else Boutique, Doud's Furniture, and Community Pediatrics Natrona Heights. 

The McNulty "Elves" in front of the toy donations.

On the morning of the delivery, Reed woke up with pink eye.  He was so bummed to miss out on the toy delivery and a birthday party planned for him and his buddy Case. I was disappointed too- I wanted to him to experience the joy of giving. Still, I was relieved that our greatest problem for the day was only pink eye. I kept Ramsey home as well, just to be safe. 

We're trying to teach Reed the importance of sharing and saving. When Ramsey was hospitalized, a sweet 4 year old gave him his own birthday money.  All who came to his party were asked to bring a few dollars instead of gifts. The money was placed into three jars- a save jar, a share jar and a spend jar. When asked if he wanted to share the money with Ramsey or with an animal shelter, he picked Ramsey...and threw some extra cash into the jar! We decided to get three similar jars for Reed.  We made three banks labeled share, spend, and save. He calls the spend jar his "tractor store" bank because he loves to buy toys from the Tractor Supply Store.  We've been a bit disappointed (and slightly amused) that his spend bank is much heavier than the other two. I hoped that he would learn the lesson on his own, without us pushing the issue.

As we prepared the toys for delivery to CHP, my proudest mom moment occurred. Reed gathered 10 envelopes along with his "spend" bank and put a handful of money into each to give to the "sick kids".  That spend bank might remain the first one that he fills, but if he's willing to share it then I'm a happy mom!