Stephen's Journey: Check This Out!

Thursday, December 16, 2010

Check This Out!

Lucky for you guys, it's a two post kind of day!! :) I just randomly found this article and video from CBS News while tracking down the phone number for Dr. Khoury's office. The article is from 2008, but talks about the rise in the number of premature babies in the US and interviews both Dr. Khoury and Dr. Baker. And you can catch a glimpse of both of them in the video. How cool is that?!

Here's a link to the article: http://www.cbsnews.com/stories/2008/06/16/eveningnews/main4185482.shtml

Here's a link to the video. http://www.cbsnews.com/video/watch/?id=4185540n&tag=related;photovideo

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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!!