Stephen's Journey: Beautiful Day Today

Friday, April 11, 2014

Beautiful Day Today

Just got back from a trip to a local park/farm this morning and wanted to share some pictures. Stephen LOVES Frying Pan Park Farm and the second we pulled in the parking lot he started shouting "Mommy, get me out!" It's such a gorgeous day and there were a lot of baby animals to see. Hope everyone had a wonderful weekend!

3 comments:

AnonymousApril 13, 2014 at 3:19 PM
Hi Lindsey,
We can't get over how much Stephen has grown! The full length pics of him standing in front of the fence really show his growth--He looks wonderful. Uncle Dick says it is time for an airplane ride. We will have to check with your folks and arrange a weekend!! Glad you had a great day and we both wish you a Happy Easter!!!

Love, Aunt LuAnn & Uncle Dick
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n.April 24, 2014 at 7:51 AM
Hello Lindsey,

We don't know each other. My name is Nàdia, and I'm currently 20+4 weeks pregnant. Yesterday, our baby was diagnosed with ARPKD. I would really appreciate sending you an e-mail asking you some questions, if you don't mind. Is there any way for you to contact me, or give me an e-mail address where I can reach you?
Stephen looks great, he's a very handsome and healthy looking boy. I think your blog is the first positive piece of information (=hope) I've found today.

Thank you so much,

Nàdia
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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!!