Stephen's Journey: Vacation

Friday, September 6, 2013

Vacation

Our trip to the beach was so awesome!! We spent almost 10 days at Nonnie and Pappa Schwartz's house in Southport, NC and did so many fun things! We talk all the time about how awesome life after transplant is, but it was so evident during our trip. We left for NC whenever we wanted, we went to the beach at night for dinner and stayed as late as we wanted, went to the beach and pool everyday without a worry about infections, and we were able to leave Stephen with his grandparents for two nights so we could to Columbia, SC with Matt and Kristin (Stephen's kidney donor) to kick-off college football season. And even better.....we didn't have to do lab work while we were away or worry about Stephen needing medical care. But honestly, the best part was being able to spend the evening at the beach and not even think about dialysis. It was so awesome!! And watching Stephen play and run and discover new things was way cool!!

We took so many pictures and I'd love to share them all, but I think I might crash a server someone if I try to upload them all (and videos too!). But I'll try to pick some favorites and remember that I post Stephen's videos to YouTube. Just search for "lschwartz531" and you'll find them all. You'll find a really great one of him running on the beach and hitting a baseball. While in NC, we also discovered out little guy has an awesome baseball and golf swing and he hits left-handed! I think he's got his Daddy's jeans!

Heading off to do some putting

Tish and Steve (Nonnie and Papa) took Stephen on the ferry to Ft.Fisher to the aquarium while we were in South Carolina. Stephen LOVED it!

Bill and I at the University of South Carolina vs. UNC football game with Matt and Kristin. Kristin is Stephen's kidney donor. Bill and Matt were roommates at USC, but Matt is a die hard UNC fan. We had a blast despite the brutal heat (it was 140 degrees in the field at game time at 6pm!).

Our last two nights in NC were spent on the beach watching the sunset while having a picnic.

And then it was back to reality. Bye bye Southport! Until next time....

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Our Crazy Kidney Life

As many of you already know, our son Stephen, was born with a very rare kidney disease called Autosomal Recessive Polycystic Kidney Disease (ARPKD). When the disease was discovered during my 27th week of pregnancy, Stephen was given a less than 1% chance of living more than a few hours past birth. He was to have such severely underdeveloped lungs that the doctors said he would likely not even take one breath. However, on January 4, 2011, we were granted our 1st miracle - and Stephen came into this world crying (and breathing!) and fighting for his life with fierce determination. At 6 days old he had BOTH of his kidneys removed and began peritoneal dialysis. Stephen came home from the hospital when he was 59 days old requiring 12 hours of dialysis every night as well as enteral (feeding tube) feeds during the day and overnight.

On May 9, 2013, we were granted our 2nd miracle, in the form of a new kidney from an extremely generous friend. Stephen received a kidney from a non-related living donor at the Children's Hospital of Philadelphia. He spent 13 days in the hospital recovering from his big surgery and ever since has been living life the fullest! His life is still a delicate balance of medications and weekly lab work, but he's an extremely vibrant, loving, active 2.5 year old.

This blog is Stephen's journey told through my eyes (his mother's), thoughts, and emotions, with extreme highs and lows. But there's no way we would be where we are today without all of the support, thoughts and prayers from our family, friends, and readers! Thank you!!