Stephen's Journey: Family Photos

Thursday, November 29, 2012

Family Photos

As promised, I've got lots of awesome pictures to share!! A few weeks ago, the wonderfully talented and generous Stephanie Ascari came to the house to take some photos of Stephen and the three of us. I told her over the phone that I wasn't sure if we'd be able to get any good photos of Stephen since the last time I tried to have someone take his picture, he was very unhappy with me. But in true Stephen fashion, he proved me utterly wrong and hammed it up for Stephanie. As you can see, these pictures were post-first haircut :)

You can check out Stephanie's work on her website at: http://stephanieascariphotography.com

Or on her Facebook page at: http://www.facebook.com/pages/Stephanie-Ascari-Photography/153371198047307?fref=ts

4 comments:

AnonymousNovember 29, 2012 at 2:56 PM
You have a beautiful family.
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Megan HNovember 29, 2012 at 4:54 PM
Love, love, love all of these photos!!!
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AnonymousNovember 30, 2012 at 9:17 AM
Linds,
These are just beautiful. Stephen is quite the ham!!

Love, Aunt LuAnn
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The J'sDecember 16, 2012 at 6:10 PM
She got so many great pictures! Glad you were able to have a fun day!!!! Hope the vanco works for his cdiff this time and you can move on with the transplant process!!!!
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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!!