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!

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!

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.

No Pain. No Gaines.

Ramsey had a follow-up recently with his surgeon, Dr. Barbara Gaines. He is doing so well! The surgery never slowed him down. Some swear that he's brighter and he's even had fewer problems in the poop department! (LOL, my sister and I were just questioning why our kids always talk about poop and now I'm doing it too) 

Dr. Gaines has been with us since day one. Looking back, it's great to see the transformation in her demeanor; it has everything to do with how far he has come.  We knew Dr. Gaines would likely perform Ramsey's surgery; hearing from several nurses that she would be THEIR choice to operate on THEIR child was a huge relief. Knowing that she had also completed surgery on my nephews and a friend's child was also encouraging. I remember the morning rounds, and specifically our conversation following Ramsey's repair. As her team stood behind her beaming from ear to ear, she remained quite serious, nevertheless pleased with the outcome of the surgery.  She knew he still had a lot of progress to make.

As the months have passed and Ramsey continues to do well, it is so awesome to celebrate with Dr. Gaines. She shares that big smile of relief. I look forward to our appointments and I would imagine that she does too- patients like Ramsey are a victory.  I was amused on the day of his recent surgery as she exclaimed, "this is so exciting"! I wouldn't have thought to use those words regarding my son's surgery, but in the scheme of things, it WAS exciting. Dr. Gaines was thrilled, even relieved, because she remembered how fragile he used to be. She knew all too well how things could and did change from moment to moment. She recalled the day he came closer to being placed on ECMO than anyone has ever come. The surgeons were prepped and ready until his oxygen improved so much that they realized, "this kid doesn't need ECMO". That's my amazing child for ya! 

Soon, Dr. Gaine's says we won't even have to worry about Ramsey. I assured her that will never happen. Still, it's good to know that from her expert standpoint, it will.

Home Sweet Home

Ramsey awoke on Saturday as if the surgery had never happened! He was happy and eager to walk and leave the hospital room. We gave him many wagon rides and he said "Bye" and waved to everyone he saw. He ate a bit more and his pain was controlled. We were discharged around lunchtime. Ramsey got to have one last visit to Ronald McDonald House before we went home and he even tried to help us clean. (I'm sure that wasn't part of his discharge instructions!)

He loves his new Snoopy!

Post-Surgery Update

Today wasn't easy for our buddy. I've never seen Ramsey in so much pain. They suspended his epidural and when he awoke, he was feeling pretty rough. They gave him Oxycodone just prior to stopping the epidural, but he needed something more and when we tried to administer Morphine, his IV wasn't working. Luckily, as we waited for a new IV, he settled enough that we didn't have to give the Morphine. By this afternoon, he was finally happy enough to bear the pain. They removed the epidural, the catheter and all that other junk he was carrying around. With his new-found freedom, and better mood, we were even able to take him for a short walk and visit to the playroom. Hopefully we can bring him home this weekend.

We stayed at the Ronald McDonald House the night before the surgery. It was fun to have Ramsey stay there with us for the first time. Both Reed and Ramsey were so excited, you'd have thought we were on vacation. Ramsey decided crawling under the sofa bed was a good idea...

We played a bit the morning before the surgery at RMH and in the pre-surgery waiting area. Thank goodness for these distractions because Ramsey was HUNGRY!

Even Daddy had a good time in the playroom!

This is me as the marshmallow man

Wednesday night, RMH hosted a luau on the patio complete with entertainment. As you can see Reed had such a good time he didn't make it to see the end of the party...

This photo is begging for a caption!

We even had dinner with Case and Liz...we love them!

As always, being at the hospital helps to bring things into perspective...it reminds me how blessed I am. I look around and see other patients and their families enduring unimaginable and varied trials. I witness spoken and unspoken pain. Sometimes, the aching is even hidden behind a smile. Still, I see goodness, and joy found in healing and in miracles and I remind myself once again, how lucky I am to be taking Ramsey home.

Prep, Delivery, News, and Surgery

I have enough information for 4 posts. Here's a quick summary and a lot of photos!

The Preparation:

Last week, with the help of some great volunteers, we assembled 70 bags for delivery to the Ronald McDonald House. These friends and family were among the many who helped us during Ramsey's hospital stay so it was great to have them with us while we prepared to honor him!

Artwork thanks to Reed and fellow students at Barbara Thompson!

 

I had a little photo shoot with Ramsey...well based on the volume of photos, I guess it wasn't exactly little. He was so cooperative and offered all sorts of unique expressions. 

The Delivery:

Today I woke up feeling almost as excited as a kid on Christmas morning. We were finally set to deliver the bags, and that just made my day! Our family made the trip along with my mom. Big brother Reed was happy to help and so excited to visit both Children's Hospital of Pittsburgh and the Ronald McDonald House. He sees both locations as one and the same...he sees them as a happy place.  He watched in anticipation for the colored "stripes" of the hospital. It is a beautiful building inside and out and somehow, Reed looks forwarded to visiting it like it is more of an entertainment venue than a hospital. "There it is...we're here...I love Ronald McDonald", he exclaimed.

We were happy to talk to and provide the bags to the same staff that worked at RMH during our stay there. They might distribute them this summer at a Luau party on June 20. When you See the end of my post, you'll see just one of the reason that date is perfect.

The News:

Marie McCandless, news editor of our local paper, the Latrobe Bulletin, featured an article about Ramsey and the welcome bag project. I'm thrilled for the awareness that it raised!!

The Surgery:

Ramsey had a checkup with surgery today. His X-Ray looks good. He still has a curvature of his diaphragm, but the patch seems to be holding well. His doctor feels now is the time to do the surgery of his abdominal hernia. He has proven that his lungs and heart are functioning well and that the chance of any pulmonary hypertension is slim. His surgery will be June 20th (the same day as the aforementioned Luau Day at RMH). His stay will be about 3-5 days. To be clear, this does not mean he reherniated. The patch on his diaphragm is still in place. However, Ramsey has a hernia on his belly. When they repaired his diaphragm and moved his stomach and bowels where they belonged, there was essentially not enough room for everything in his tiny, once empty belly. Thus, they used a mesh patch to help. As expected, the mesh patch is no longer doing it's job. His surgeon will operate at the original incision site. Now, he has enough extra skin and room to reconnect the muscles/lining of his abdomen without the use of a patch. In essence he'll be having a little tummy tuck. The results? No more giant bulge on the left side of his belly. Hopefully greater ease with bowel movements. And quite possibly, a lesser scar than he already has. Thank God for cool surgeons!