Stephen's Journey: Merry Christmas

Thursday, December 27, 2012

Merry Christmas

We hope everyone had a happy and healthy Christmas and wanted to share a few of our Christmas Eve and morning photos. Stephen had an awesome Christmas this year and it was even better because we spent the entire Holiday at home!! Bill's parent's spent Christmas Eve and Christmas morning and then parent's drove down from PA to spend Christmas night and a few days with us here in Virginia. It was wonderful to have the space to have lots of family here with us and also have a place for all of the loot Santa brought Stephen. We hope you all had a wonderful Holiday as well filled fun and laughter with family and friends!!

3 comments:

AnonymousDecember 28, 2012 at 2:55 AM
Glad to hear that all of you had a wonderful Christmas. Stephen looks like he is enjoying all of his new toys--especially his "bachelor pad kitchen". He will be every woman's dream--good looks and a man who can cook!!!!
Love,
Aunt LuAnn
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The J'sDecember 31, 2012 at 1:34 PM
Glad y'all got to have a great Christmas- and at home! We're praying everyday for the C-diff to go away and stay away!! Jackson got a train table too.... hours of fun for them! Happy New Year!
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AnonymousJanuary 5, 2013 at 11:52 PM
So glad you had a great Christmas! I saw a St. Bernard in the background of one of the photos you posted. Is that your dog? We have a St. Bernard called Toeby. He is a sweetie, but getting up there in years.
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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!!