Stephen's Journey: Guess what?

Saturday, August 6, 2011

Guess what?

Guess where we are? I'll give you a hint...it isn't where we are supposed to be.

3 comments:

AnonymousAugust 6, 2011 at 7:52 PM
Gosh Stephen, you look soooo handsome in that stylish designer hospital gown. We were so happy that we got to meet you this morning before you left York. We could see how much you've grown and that you are just as beautiful in person as you are in those great photos Mom keeps sending us.
Stephen, you have to realize that there are many other women in this world who want to shower you with love and attention besides those beautiful nurses you met in the hospital:) So hurry up and feel better soon so we ALL have a chance to spoil you!!
Hugs, Kisses and Many Prayers...
Aunt LuAnn
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AnonymousAugust 6, 2011 at 9:19 PM
Dear Lindsey and Bill,
Thank you for making your first trip to the neighborhood! Meeting Stephen on Thursday was very special.Watching him playing with his toys, eating his yukky peaches and seeing him smile was awesome to witness. What a dear little boy!!!!!
Prayers and Get Well Wishes!
Sue
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UnknownAugust 6, 2011 at 9:44 PM
Oh no! As always, sending lots of prayers and love. Please, PLEASE let me know if we can do anything at all for you guys.

So much love.
Sarah
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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!!