Stephen's Journey: Merry Christmas

Sunday, December 25, 2011

Merry Christmas

We had such a wonderful Christmas today! Stephen had a blast ripping apart the wrapping paper and bows and I think he understood that he got some new toys today. And best of all, he slept in! We had to wake him up around 9:15 this morning. Although, we were up with him last night for a few hours, so it wasn't like he slept the whole way through the night (but these seems par for the course with the medications he's on). Santa was very good to us this year, and it was everything we hoped it would be. It was certainly 180 degrees different than last Christmas!

It was really hard to choose, because we took so many pictures, but here are a few picture from Christmas Eve and today. We hope you all had a wonderful Christmas with family and/or friends or just spent the day in comfy clothes watching movies (as we did all afternoon and evening).

2 comments:

AnonymousDecember 25, 2011 at 11:21 PM
Merry Christmas!
I've been waiting for your post all day!! I just knew you would have some great pictures. Picture #5 says it all!!!! What a honeybunch!!!
Stephen is certainly our miracle and number one on everyone's "Thankful List" this year. He has taught us more about love, faith and devotion in one short year than we have learned in a lifetime. So happy you had a wonderful first Christmas...
Love to all,
Aunt LuAnn and Uncle Dick
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JamieDecember 25, 2011 at 11:43 PM
What a blessing! Merry Christmas!
Continuing to pray....
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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!!