Stephen's Journey: Sunday Funday

Sunday, May 19, 2013

Sunday Funday

Oh my I just saw someone's comment that I hadn't posted all weekend; oops! But I do have a good excuse...Stephen did not have good day yesterday or this morning. But thankfully, he had a great rest of the day today and is currently sitting on the couch in our room on his Daddy's lap and right next to Nana.

We still have night rounds and bedtime to get through, so I won't get into all the details right now, but I'd love to share some great pictures from today of Stephen taking his first steps since the surgery and having fun playing hockey and taking a stroll outside of the unit. Bill and I were even able to get for a bit and have lunch outside of the hospital while Stephen played with Nana. It was a nice break to mentally recoup. I'll share more details of our weekend in a bit. But in th meantime, enjoy the pics!

4 comments:

AnonymousMay 19, 2013 at 10:04 PM
Thought I'd check one more time before turning in for the night. So glad I did--the pictures are fantastic and SUPERMAN is looking better every day.

Hugs and Love,
Aunt LuAnn and Uncle Dick
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AnonymousMay 20, 2013 at 9:20 AM
What a relief it will be to get Stephen out of the hospital, away from all of the prodding, poking and interruptions. It will finally allow him to relax, and that will help him heal more quickly. Thanks for posting.
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AnonymousMay 20, 2013 at 1:50 PM
Great post!
Glad to see him look like Stephen, again!!!
Hang in there!!
Sue
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AnonymousMay 20, 2013 at 4:54 PM
Great to see him up and moving around!
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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!!