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.

Thank You! Thank You! Thank You!

We are thrilled that the Ronald McDonald House collection in Ramsey's honor was such a success! Our goal was 61 bags. We have enough for 70+ well-stocked bags. I can't say thank you enough to each of you that have helped to make this a success! We couldn't have done it without the help of friends, family, churches and businesses who supported the project. In addition to the products that were donated, we received enough in monetary donations to purchase custom tote bags! We also have enough money left to purchase a few items that we still need, and possibly some extra to go towards preparing a meal for the families at RMH on the day we deliver the bags. We hope to prepare the bags in April and deliver them in late April or early May. We're so excited to support over 70 families in Ramsey's honor!

My basement is packed with donations!

Ramsey displays some of the goodies!

Now, about the bags...you may remember the logo I created to raise CDH awareness and prayers for Ramsey. We used it on Facebook and even ordered cute buttons that our family, friends, and eventually the staff at Children's Hospital wore in honor of Ramsey.

We were (and still are) amazed at the immense support we received. As I planned this project, one thing I wanted was a way to allow other families to praise and honor their loved ones...to share their story, to request prayer, to seek consolation from other's who have walked in their shoes. That's when the idea for the tote bag graphics came along.  I modified the "Rooting for Ramsey" logo so it just says, "Rooting for _______". Each tote will include a marker so the family can fill in the blank with their child's name. I had tags made to attach to each bag that briefly explain why we wanted to honor Ramsey. They invite each recipient to visit our new Facebook page, Rooting for a Reason, to share their story. I hope the page might grow so each family can benefit from the support and prayers of others just like we did!

Gift of Giving Update

It has only been one week since Ramsey's birthday and we are already receiving a great number of product donations and a few cash donations too!  See below for a rough count of the items we've received. Also, a couple new items were added. I will try to update the "Gift of Giving" page as donations come in.

If we are able to make more than 61 bags, then GREAT...we'll do it! If we end up with extras of certain items, we will donate those in addition to the gift bags. Also, if we have extra of certain items, we will give a couple per bag.

 Travel size products:
Deodorant -   Mens 6, Womens 10
    Shaving Cream Mens 8, Womens 4
Razors Mens 22, Womens 15

Soap/Body Wash 63
    Shampoo 30
Conditioner 8
Toothpaste 14
Toothbrushes 25

Body Lotion 31

Lip Balm 10 +61 more on the way!

Brush/Comb 7

Tissue Packs 36

Hand Sanitizer 13

Notebooks 5

Pens 45

Game/Puzzle Books 2

Disposable Cameras 0

Gum/Candy 9

Slipper Socks 0

Room Decorations 0

Cards 0

Dish Soap

Sponge or Dish Cloth

 

 Other donations we've received: 

Bath Poofs - 61 are on the way

 Hand Lotion 129

Pads

Nail Clippers

Shower Caps

Q-Tips

Cleansing Towelettes

Hair Spray

The Adventures of SUPERRAM!

Celebrating Ramsey's birthday was pure joy. We invited family and a few friends to our home to commemorate the big day.  In my heart, I wanted to invite everyone- our extended family, our friends, our new CDH "family", every nurse, doctor and contact we made from Latrobe to Pittsburgh and of course, everyone who reads this blog. Still, I knew it was best to hold back. Perhaps if it was summer, I might have given in, but it's January and it's germy.  In my heart, I know each of those people are celebrating with us as they have celebrated his success the whole year through!

Before I share some party pics, I need to backtrack to Thursday, his actual birthday. I woke up feeling incredibly anxious. I'd say I fell just short of a meltdown and I really couldn't explain why. Then my friend Liz (mom of Case), sent a text message. It said, "Do you feel extra emotional today ;)". Apparently, her NICU telepathy told her to reach out to me. She said she felt the same way on Case's birthday, and she "meant to warn me", but forgot. (Thanks Liz; I'll remember that - LOL). Liz and I decided that it's not just a fluke that we both had supercharged emotions on our child's first birthday. Yes we were, and are, incredibly happy to celebrate that first birthday but we couldn't help but feel a bit out of control. If you're a NICU mom anticipating your baby's big day, don't be surprised if you feel a little off! And don't say I didn't warn you :)

Now, back to the party details. Since Ramsey is so super, we celebrated with a superhero party. The pics say it all....Happy Birthday Ramsey!! We love you.

The Invitation

Cape Kits!

CDH superhero capes!

That doesn't look like oatmeal!

What do I do with this thing?

Ramsey desperately wanted to help decorate the capes

SuperDino borrowed Reed's cape

If I stick out my tongue, maybe I can fly!

Ramsey checks out the Ronald McDonald House donations

The News

Our first ultrasound on August 24, 2010 told us the good news...we are having another boy! Reed is going to be a big brother!  The sonogram also revealed something more- a hernia. My doctors recommended that we go to West Penn for a Level II ultrasound the following week, on August 30. Although concerned, we were convinced it would be another "false alarm" as we had when we were expecting Reed. (Measurements from Reed's sonogram indicated he might have Down's Syndrome, but fortunately, they were wrong).

At our appointment, we knew what to expect from the previous year. Genetic counseling, followed by the ultrasound. We had the same counselor and doctor who both remembered meeting us almost three years before. The counselor immediately asked what we had been told. We had only been cautioned that it looked like he had a hernia near his stomach. My online research revealed three types of hernias; the first two generally go away on their own, the latter is much more serious and it's called CDH. Immediately, we were told the sad news- it is in fact CDH  (Congenital Diaphragmatic Hernia). Ultrasound revealed that his stomach has herniated up into the chest, pushing the heart aside. Lung development is still unclear (at that point, we could only see one lung).

The Plan:

I will now deliver the baby at West Penn Hospital where I have been assigned a new doctor. The baby will be taken to Children's were surgery/surgeries will be performed. Throughout the remainder of the pregnancy, the baby will be monitored for signs of heart related distress and most importantly, for lung development. 

My next appointment at West Penn is September 30.  We are hoping to have a clearer picture of the lungs and also if any other organs have moved into the chest area. We will also meet with a pediatric cardiologist for an echo of the baby's heart.

Let's pray for encouraging news at this appointment and strength for each of us along the way.