Stephen's Journey: Old McDonald Had A...

Thursday, November 8, 2012

Old McDonald Had A...

Last Sunday we took Stephen to a nearby park that is a working farm (thanks Grandma and Grandad Schwartz for finding it) to see the animals and had some great photo ops! Some of Stephen's favorite words and sounds are animals sounds and he didn't disappoint! You can hear Stephen in the video "talking" with the rooster and the rooster talking right back all the while the cows in the pen next door wanted to get in on the conversation. It was hilarious!!! And it was actually a pretty cool looking rooster!

And here are some pictures of Stephen checking out the sheep; another one of his favorite animal sounds. Lucky for us, this farm is only about 10 minutes from our house, so I'm sure we'll be frequent visitors to the Frying Pan Farm Park!

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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!!