Stephen's Journey: Prayers Please

Monday, June 24, 2013

Prayers Please

Please say some prayers for Superman. His blood work wasn't so great today (creatinine was up and white blood cells are down) so they're admitting him tonight at CHOP for a kidney biopsy tomorrow. Hoping that all of this was caused by a lab blunder and they'll send us home tomorrow. Fingers and toes crossed!!

Well at least we had a super fun weekend at home. Here are some pictures I wanted to share.

2 comments:

AnonymousJune 25, 2013 at 12:04 AM
Dear Lindsey,
Sure this is just a bump in the road. We pray for Stephen every day but extra special ones coming your way tonight and tomorrow....
Love,
Aunt LuAnn
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BethJune 25, 2013 at 10:28 PM
Praying for all of you Lindsey.
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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!!