Stephen's Journey: Awesomeness

Wednesday, June 19, 2013

Awesomeness

There's not a whole lot to share tonight except that things are going so awesome! Stephen's prograf level on Tuesday was great, his white blood cell count is coming up and they removed the remainder of his staples. So all around, things are going great and we get to move home on Friday!!! There's not much else to share in words, but I think these pictures speak volumes for how far Stephen has come in the past few weeks and just how great he's feeling with his new kidney. Some of the pics are from our trip home over the weekend, and some are from a quick trip we made to York yesterday and today (we were lonely and bored in our Philly apartment). This was Stephen's very first time running through a sprinkler! He loved it and had so much playing with his cousins running around the yard. It was hard to say goodbye, but we'll hopefully see them soon at our house in VA.

Enjoy! xo

3 comments:

AnonymousJune 20, 2013 at 8:35 AM
Hi Linds,
What a wonderful way to start our day--Pictures of Superman!! His smile says it all!
Love,
Aunt LuAnn & Uncle Dick
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AnonymousJune 20, 2013 at 1:01 PM
Just pure happiness and freedom.........what a great way for a 2 year old to spend his day.
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AnonymousJune 20, 2013 at 11:09 PM
I am so happy for you guys ! He looks so happy !sending hugs ! Xoxox love Carrie,Tom,CC,tommy and Quentin
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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!!