Stephen's Journey

Thursday, December 22, 2011

WE.ARE.HOME!!

Once I get my feet under me again (there's always so much to do when we get home from the hospital), I'll write more. But Stephen is currently rolled up in a little ball, in the upper corner of his crib, snoozing like a baby! All the prayers were answered. Stephen will be home for Christmas!!!!

4 comments:

ciaraDecember 22, 2011 at 10:13 PM
As Dora says, hip hip hooray!!!!!!
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AnonymousDecember 23, 2011 at 9:56 AM
Dear Lindsey,
I am so happy to hear the good news! Now please relax and enjoy your first Christmas with your son--he is all that matters. Uncle Dick and I both wish the three of you a Christmas blessed with happiness and peace, Know that Stephen has been a true gift from God and he could not have selected a better Mommie and Daddy for this special gift.
Love from our hearts...Merry Christmas!!!
Uncle Dick and Aunt LuAnn
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Ally GroffDecember 23, 2011 at 10:59 PM
That's wonderful news. We've been thinking of you all and praying for Stephen. We are so happy to hear that you will be home in your own house for Stephen's first Christmas!
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Julie McClellandDecember 24, 2011 at 2:03 PM
YAY!!! Congratulations! I am so thrilled for all of you that you are home for Christmas.
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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!!