Stephen's Journey: Waiting for MRI

Thursday, June 9, 2011

Waiting for MRI

Here are a few pictures of our brave little guy as we wait to go down for his MRI at 2 pm. The poor guy can't eat for 8 hours before the procedure because he is sedated during the MRI, so he's been a pretty unhappy camper so far this morning. Hopefully he'll fall asleep soon and stay asleep until it's time to go.

He's been such a trooper this time around! And it definitely helps that his IV is in his ankle/foot this time so he can use those hands to hold his pacifier and play with his toys.

7 comments:

b00merJune 9, 2011 at 2:59 PM
I have been thinking of you guys! I hope you get some answers and some peace soon.
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AnonymousJune 9, 2011 at 3:06 PM
Hi Lindsey,
Hope the MRI goes well. Stephen looks calm considering all he has been through the past couple of days. I am sure Mommy's TLC has something to do with that. You are in our thoughts and prayers....
Love,
Aunt LuAnn
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UnknownJune 9, 2011 at 4:21 PM
Even feeling poorly and stuck in a hospital bed, he still looks so, so beautiful. What a precious boy. Praying things get sorted out soon.
xxoo
Sarah
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AnonymousJune 9, 2011 at 4:33 PM
What a cute little guy! Love the outfit! He's accomplished more in his lifetime then some of us ever accomplish!!! Here's to an answer and peaceful evenings!

Kelly Livingston-Ellis
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StaciaJune 9, 2011 at 5:58 PM
He is such a cutie-pie. I hope the doctors can figure out what's going on so the little guy can rest and eat!
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ciaraJune 9, 2011 at 6:26 PM
he is adorable! praying for a speedy recovery and an easy solution.
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lehighfillJune 10, 2011 at 1:46 PM
What a cutie-pie!! You guys are so strong! Prayers coming your way everyday. Hoping you get some answers very soon. XOXO
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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!!