Stephen's Journey: Super Bowl Sunday

Sunday, February 5, 2012

Super Bowl Sunday

Last year we were sitting in Stephen's room cheering on the Steelers on Super Bowl Sunday. A few of Stephen's nurses were Steelers fans, so we turned his room into a mini Steelers shrine. Well actually, his room was a mini sports "pub" full of lots of sports paraphenlia from Penn State to South Carolina to LSU and even the Giants! So since Stephen actually wore a Giants jersey at one point during his stay in the NICU, we're rooting for Eli and the NY Giants tonight.

I was so excited because I thought I would get a really cool sort of before and after shot of Stephen today in his Giants jersey. But I realized last night that I packed away the jersey with the rest of his things from the NICU and put them in our storage unit :( One of the downsides to living in 1,100 square feet. And of course they're closed on Sundays.

Although I was unable to get a picture of Stephen in his Giants jersey tonight, I still thinks it's a cool comparison and reminder as to how far Stephen's come in just one year. You'll be amazed!!!!!

Here's Stephen last year in the NICU. This was taken at the end of January during his fight against pulmonary hypertension. Which he totally conquered!!!

Here was a little piece of the paraphernalia we had hung in "Stephen's Pub"

Sorry these pictures aren't very good, but here's our little football fan cheering on the Giants (or Patriots depending on who you ask...I picked the Giants, Bill picked the Patriots):

We're working on signaling a touchdown. I'm hoping we'll have it down by the time football season rolls around again in August!

I hope everyone has a fun and safe Super Bowl Sunday!!!!

1 comment:

AnonymousFebruary 6, 2012 at 9:13 AM
Wow! What a difference one year, a lot of prayers, and the fighting spirit of Superman has made! Stephen truly is a miracle!!
Love to all...
Aunt LuAnn and 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!!