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!

Amazing Case

We love our NICU/RMH friends, the McNulty's! Their son Case was born just a month before Ramsey. I met his mom Liz in the halls of RMH; we were meant to be friends. Our journeys have been quite different, still we share that NICU bond. Liz and her husband Dan have 4 beautiful children; they have three daughters: Meredith, Samantha, and Lainey...and of course their son, Case. Their blog is: http://averyspecialcase.blogspot.com/

Case is an amazing, joyful, loving boy and I'm honored to be a part of his life. Recently we visited the McNulty's and our kids finally got to spend some time playing together. Yesterday, we joined them for a special benefit in Case's honor. A group called the Burgi's Low Life Riders organize an annual 100 mile motorcycle ride. All proceeds benefit the family of a special needs child. This year they selected Case and a 3 year old named Tiffanie. We met up with all the riders at the end of the day for a great meal and celebration of both children. Liz would say that it doesn't take much to make me cry, but when I saw the police escorted group of motorcycles (hundred's of them) arriving to celebrate Case, well I couldn't help but cry some happy tears. I can't think of anyone more deserving of the honor. 

Backyard fun

Case is a hugger :)

Liz and Case at the Benefit

Case's first "Ride"

Fierce!

Dennis and Dan

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!

Updates

Ramsey went from the fever/virus, to an ear infection, to two new teeth. Despite it all, he has been pretty pleasant as usual. I think the teething has been more bothersome to him than his other ailments. I am so happy that his appetite is back now that he is feeling better!

We continue to be touched by the donations we've received for the Ronald McDonald House Gift of Giving! We are so appreciative that many have stepped forward to help gather donations; we wouldn't be so successful without their assistance. To everyone that has helped or has donated, WE THANK YOU!  Visit the Gift of Giving page to see the latest count.