Stephen's Journey: Luck of the Irish

Thursday, March 17, 2011

Luck of the Irish

Happy St. Patrick's Day to all of our Irish (and non-Irish) friends! Here's Stephen on his first St. Patty's day.

And what happened when Mommy took my green milk away....

5 comments:

ciaraMarch 17, 2011 at 3:42 PM
So Handsome! He looks great - healthy & happy (otehr than the last pic)!
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Danielle HobbsMarch 17, 2011 at 4:02 PM
So cute!!! Luck 'O the Irish to ya! :) It's so wonderful to see him without tubes and looking so healthy!!
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AnonymousMarch 18, 2011 at 9:01 AM
He looks wonderful and so handsome in his Irish togs. Looking more and more like his Daddy as he grows!! Last pic--just like a man when you take his green beer away!!!

Love to all...
Aunt LuAnn and Uncle Dick
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{darlene}March 18, 2011 at 9:56 PM
Oh, he is TOO precious. Belt it out, baby!
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AshlyMarch 19, 2011 at 11:03 PM
Wow!!! He was NOT happy when you took his milk away!!!! He is so precious!!!
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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!!