Stephen's Journey: Foto Friday

Friday, June 24, 2011

Foto Friday

Here are a few pics I snapped this week. We like play "Where's Waldo" when Mabel snicks her nose in the pictures. She always needs to be in the mix, but I wouldn't have it any other way!

In the past two weeks, the Wubanub pacifiers (it's a soothe paci attached to a little stuffed animal) have become Stephen's favorite toy. I bought them for him when he was in the NICU, but it wasn't until recently that he's really been able to hold onto them and pick them up and put them in his mouth. Those paci's will keep him occupied for a good 45 minutes! So they now go everywhere with us!

3 comments:

AnonymousJune 25, 2011 at 12:37 PM
Beautiful! Looking more and more like his Daddy. We loved Mabel's protective "eye" and the "giggle" photo at the end. Keep those pics coming...Love to all...
Aunt LuAnn and Uncle Dick
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AnonymousJune 25, 2011 at 3:07 PM
Oh, I failed to mention the beautiful eyese and LONG eyelashes...He will certainly be a "charmer" with the ladies!!!

L.
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ciaraJune 27, 2011 at 5:17 PM
He is so cute! I love the Stephen/Mabel bond. Vivienne and our 90 pound black lab Eddie are best friends.
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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!!