Stephen's Journey: Weekend Roundup

Sunday, August 28, 2011

Weekend Roundup

As I expected Hurricane Irene came and went and we weathered the storm with ease. We lost some big trees in our community, but thankfully we never lost power and we didn't have any flooding. Hopefully our NYC friends will fare the same!

Here are some pictures from this weekend. I'll make sure to update this week after our big appointment on Tuesday!

1 comment:

AnonymousAugust 28, 2011 at 7:02 PM
What a cutie pie!! It thrilled us to see and hear him laugh!! Glad to hear that you folks weathered the storm OK--We worried you might lose power and thought about you all evening. Keep those photos and videos coming our way--they really make our day!!! Hope all goes well with the appointment this week.
Love to all...
Aunt LuAnn
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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!!