Stephen's Journey: Fun Night

Monday, August 5, 2013

Fun Night

Stephen and I are back in Philadelphia tonight after a nice little vacation to the beach last week. Bill and I spent a few days in NC while Stephen spent his vacation at Nana and Poppa's house. A great little break for everyone! And best of all, we got to spend some time with Stephen's kidney donor, Kristin and the whole Freeman family while down in North Carolina.

After checking into the Gift of Life House, we strolled over to one of our favorite parks; Franklin Square, to enjoy the awesome weather and check out the fountains. While there we also shared some yummy french fries, chased some bubbles and ran through the grass barefoot. And...we got to finally meet one of our good kidney friends; Parker and his Mom and Dad, Kristen and Jason. Kristen and I have become good friends over the past two years, bonding over our little super boys, but we haven't had the opportunity to meet until now. The Porche's live outside of New Orleans, but are here at CHOP this week while Parker is evaluated for his kidney (and possible liver) transplant. Parker and Stephen have the same birth/infant story and the exact same disease and connected long ago while Kristen was still pregnant and Stephen was just a little baby. I'm so happy we finally got to meet, although wish it were under different circumstances for sure. You can read more about Parker and his journey to transplant here: http://parkersfightagainstpkd.blogspot.com/

Here are some pictures of our fun night. Now lets just hope the fun continues and we get some awesome lab results tomorrow at transplant clinic (and some sleep for Mommy!)!

2 comments:

AnonymousAugust 6, 2013 at 8:59 AM
Hi Lindasey,
You certainly had a beautiful day to be in Philadelphia. Glad you and Stephen had some "Mommmie and Me" time in the park. Stephen looks wonderful and we pray for the same results for Parker and his family.
We will keep our fingers crossed for a good report from clinic.
Love,
Aunt LuAnn and Uncle Dick
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AnonymousAugust 8, 2013 at 1:29 AM
It had to be so helpful for the other family to see Stephen and how well he is doing. Plus, I am sure you have so many things to share with them about how to get through the transplant and come as far as you , Stephen and Bill have come. You are so inspiring.
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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!!