Stephen's Journey: Happy Birthday Superman!!

Friday, January 4, 2013

Happy Birthday Superman!!

My amazing little boy turns 2 today!! I am so incredibly proud of him and all he's accomplished in his short time here. Thinking about this day two years ago brings an incredible flood of emotions and thoughts back, but truly it was an amazing day and I wouldn't change a minute of it (even the 16 hours of labor)! Every single star in the universe aligned that day (those who were there that day know exactly what I'm taking about!) to bring us our miracle baby!! And now just look at him!! He's proved a lot of people wrong and shown that anything is possible with love and determination! He is my hero!!

I had grand plans for a great birthday post, but I've come down with a raging viral sinus infection and flu-like symptoms and have been in bed the past two days. So I apologize for the lack of a birthday post. We've even post-postponed the birthday celebration by a week :( So as soon as I'm feeling better, I promise birthday pictures and lots more!

3 comments:

AnonymousJanuary 4, 2013 at 4:16 PM
HAPPY BIRTHDAY STEPHEN!!! You are everyone's miracle and hero. You have taught all of us what is truly important in life!!! We know that 2013 is going to be your "lucky" year and the perfect kidney you are waiting for will arrive by angels wings!!!

Love,
Uncle Dick and Aunt LuAnn
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AnonymousJanuary 4, 2013 at 4:40 PM
Hope you are taking care of yourself and have enough help so you can rest. You have so much to feel good about and be proud of. He looks great and very happy.
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AnonymousJanuary 4, 2013 at 4:48 PM
Happy Birthday ! Sending lots of hugs ! God bless today and always ! Xoxo Carrie, Tom, C.C., Tommy and Quentin
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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!!