Stephen's Journey: Happy Hump Day

Wednesday, October 3, 2012

Happy Hump Day

We didn't make it to CHOP today because Bill has the flu, so I thought I would post some pictures instead. I feel bad for him because I've never seen him so sick and even though he's been in bed all day, it's nice knowing he's right in the next room :)

Hope these cute pictures brighten up your day!

2 comments:

AnonymousOctober 3, 2012 at 8:38 PM
We absolutely LOVE to see our little grandson growing, developing, and getting through all the "trials and tribulations" that he has accomplished -- with all the love and support of his Mommy & Daddy, and all those loving friends and family member.

All our love --- soooo cute !!!

Mimi & Popa Noll
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AnonymousOctober 4, 2012 at 3:15 PM
Hi Linds,
The pictures are sooo adorable. The one of Stephen and Mabel touches my heart the most.... You can really tell that they are true "Best Buds". Hope Bill is feeling better soon.

Love and Hugs,
Aunt LuAnn & Uncle Dick
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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!!