Stephen's Journey: Update

Monday, January 10, 2011

Update

It's been 5 hours since we left Stephen in the OR. Still no update or word about the status of his surgery.

7 comments:

AnonymousJanuary 10, 2011 at 2:19 PM
Sending my thoughts your way. Stephen is a fighter, you and Bill are so strong, and so many people are here for you all...keep us posted.
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AnonymousJanuary 10, 2011 at 2:23 PM
Our thoughts and prayers are with all of you....I know God is listening.
Love,
Aunt LuAnn
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ciaraJanuary 10, 2011 at 2:53 PM
this must be the longest wait of your life. i can't imagine the stress you are under. stay positive.
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AnonymousJanuary 10, 2011 at 3:04 PM
You are in our thoughts and prayers, love to you all.
Lynn and Biggs Cannon
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UnknownJanuary 10, 2011 at 3:10 PM
I can't even begin to imagine... So much love and prayer coming from here.
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AnonymousJanuary 10, 2011 at 4:19 PM
I have been thinking of you all day and praying for Stephen.
Love,
Miriam Sanz
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AnonymousJanuary 10, 2011 at 5:09 PM
I have been thinking of you and your family today, keeping you in my thoughts.
Stephanie Jamrozy (W.F. Minneapolis MN)
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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!!