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! 

Bungee Jumping and Superheroes

Ramsey had 2 appointments this week at children's. First, he had a CT scan as a follow-up for his spinal anomaly followed by a review with neurology. The fusion of his skull to his spine hasn't changed much. His symptoms are mild and we won't need to follow up again for two more years. At that point they will do flexion x-rays. We weren't surprised to learn that we'll need to limit his physical activities due to the risk of spinal injury. That means no football, wrestling, trampoline jumping and yes, no bungee jumping, ever. I hope he'll have enough interest in other activities that he won't mind the limitations. I wonder how he'll feel to learn he can't do those things. Also, I worry about unexpected accidents. We returned home from CHP that same day and he fell over the arm of the couch right onto his head. These things worry me. I know with time my fear will fade. I know that I could unknowingly have the same spinal anomaly...any of us could, but knowing about it somehow makes it scarier and googling it does too. Google is good for a lot of things but not health concerns!

Ramsey also had a chest x-ray and appointment with his surgeon. His lungs look great! His diaphragm looks great! He's just an all-around awesome almost two year old.

Playing at RMH between appointments

We were happy to see some of our NICU friends. Most of them hadn't seen Ramsey since his discharge. They were AMAZED at how good he looks. That he walks. That he talks. He breathes and eats and does all the things odds said he might not do.

Our NICU friends are everyday people but every day they have the chance to impact lives. In my mind they look something like this:

They save. They encourage. They entertain. They bond. They say good luck and sometimes they say goodbye. I don't know how they do it, but they handle the ups and downs and still return to work everyday, ready to do it all again. Call me corny, but they're my heroes. They inspire me and I'm proud that they remember my little superhero as one of their successes.

This is how I say "Cheese"

CHEEEEEESE!

Ramsey loves his construction hat!

I wonder

I'm surprised by how much time has past since I last blogged. Even more amazing to me is that Ramsey will be two soon- January 12! December 2nd will mark the Anniversary of my preterm labor and the bed rest that followed. It's hard to believe that I rested for 6 weeks. I have to admit, that sounds pretty appealing right now!

I wonder if Ramsey remembers anything from the beginning. Maybe remember isn't the right word, but I question if he already knows what a miracle he is. I love introducing him to people who prayed for him along his journey. Often, they notice how his smile rarely fades. Recently, he visited our dear friend, 95 year old, Miss Honey. I love how easily he brings joy to others. That smile of his is contagious!

Ramsey loves dishing out hugs and kisses, but he doesn't like to be held. I wonder if that's just the type of person that he is, or if his NICU experiences made him that way.

Tonight, he fell and got a little "boo boo" (one of his favorite words). He wouldn't let me comfort him. Instead, he ran away crying. I just wish he'd let me cuddle him! I suppose his toddler energy has something to do with it as well. Even with all the chairs pushed in, he still manages to sneak up on the dining room table and give the chandelier a little swing or throw some food into my centerpiece. He's quick!

Several weeks ago, before the weather turned cold, we had some fun times playing in the backyard. The boys loved the leaves....

As the sun set and we headed inside, Reed and Ramsey ran together through the yard. And it hit me. That was THE MOMENT...the moment Dennis and I both imagined nearly two years ago. On that day we knew for certain that Ramsey would survive. That just might have been my favorite day in the NICU- learning he was out of the woods.

These are a few of his favorite things:

Mickey!

Cousins!

Coloring!

Doc McStuffins!

Christmas Gift Collection

We want to continue the tradition of helping and encouraging others just as we were supported during Ramsey's sickness. Along with the help of Ramsey's buddy Case's mom (please LIKE his new Facebook page), we are spreading smiles this Christmas season through our project, Rooting for a Reason.

We're Rooting for Patients!

We know first hand how hard it is to spend time in the hospital beside a sick child. We also know the warm feeling that spreads through our hearts when someone comes to our sweet child's hospital room with a gift. This Christmas, please join us in spreading smiles to patients at Children's Hospital of Pittsburgh. We'd like to donate Christmas gifts to the children who can't go home for the holidays. From now until December 13th we'll be collecting donations. Please view these gift suggestions from Children's that are sure to make a little boy or girl smile this Christmas. Please note, in the hospital, infection is always a risk. To protect patients, the hospital can accept only new items or those items that are clean and in excellent condition. We appreciate your support and know how meaningful this gesture will be to patients and their families. We'll be rooting for hope and spreading joy to those not able to be where they should be for the holidays...home.
 
Paypal donations can be made below and will go directly towards the purchase of items from Children's suggested wish list.

Pumpkin Patch!

Despite the cold rainy weather, we had a great time this weekend at a local farm. We picked pumpkins, ate some awesome baked goods, and let the boys play a bit before returning home to carve our selections. I found some Halloween music to listen to while we carved them. Reed proved he takes after me when he belted out the wrong words to ghostbusters. His version: Go Buster!!!

Ramsey loved running through the pumpkin patch despite tripping over every loose vine and face planting off the picnic table onto the wet grass (not my proudest mom moment).