Stephen's Journey: Happy Birthday Stephen

Monday, July 4, 2011

Happy Birthday Stephen

Dear Stephen

Today you are 6 months old!! You have become such a little man with the biggest personalty to boot! Everyone who crosses your path instantly falls in love with you and thinks you are one amazing little guy!! Your journey continues to touch people's hearts and your strength and courage inspires people to live their lives to fullest. I am a bit saddened that you are spending this milestone in the hospital, but I have to remind myself that we are so blessed to be able to hold you, play with you, and watch you grow, even if it is in the hospital.

Your favorite things right now are Geoffrey, your giraffe pacifier, your crib mobile, your butterfly, owl, and cowl, and your green ball (courtesy of the hospital, although I don't think they know it). And we can't forget your swing. You still adore your swing and love taking long naps in it. You're still not sure of your jumparoo, but you're starting to like it more and more. You still hate tummy time, but you're getting much better at it and are starting to roll. I'm sorry to say that Dad and I still swaddle you tight at night, because you're a very restless sleeper, but hopefully you'll grow out of that soon. Unfortunately, you sleep the best when at the hospital. You LOVE your craftmatic adjustable crib with a soft mattress that resides only at the hospital. Sorry kiddo, but my attempt at recreating your hospital crib at home has miserably failed.

Dad and I love you more than life itself and can't wait to see what the next six months holds in store for you. I know it will be lots of fun things like meeting your cousins for the first time, going to Mimi and Poppy's for the first time, and going to the beach for the first time. I can't promise there won't be any more hospital stays, but I can promise that your Dad and I will do everything and anything to keep you happy and healthy so we can spend every day and night at home.

I love you love bug!! Happy Birthday!!!!! And 4th of July!

XOXO
Mommy

2 comments:

rashmi p.July 4, 2011 at 8:35 PM
Happy 6 month birthday sweet baby Stephen!
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AnonymousJuly 5, 2011 at 8:10 AM
Aw, he does inspire people - even strangers like me! :) But what I most want to know now... is your husband's matching polo also a one piece ensemble with a crab on the butt? ;)
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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!!