Stephen's Journey

Sunday, October 16, 2011

Not much to update right now except that we should know by Wednesday at the latest when we'll be going to CHOP. I spoke with them on Friday again and I should hear from the social worker on Monday or Tuesday. Very exciting!!!

Since I don't have a whole lot of news to share, I'll just share some photos :)

These were taken at music class on Friday. It was box day, so all the lids were supposed to bring a box they could play in and use a drum. I almost wasn't going to bring one since Stephen is so young, but I'm so glad I did! He sat in it perfectly and loved banging on it! And it made a pretty cute photo op! I know it doesn't look it (because he always looks so worried/serious) but he really did have a fun time!!

He loves that music class!! I think it's a combination of the music, the clapping, and watching all of the other crazy kids run around!!

And here's a cute video I snapped of Stephen laughing at Mabel. They just love each other!! Last night we were at Nana and Granddad's for a block party in their neighborhood and Stephen had a ball watching all of the crazy dogs run around and wrestle each other. I can't wait until he's able to chase after them!!!

1 comment:

AnonymousOctober 16, 2011 at 8:27 PM
Hi Linds,
Loved the photos! Stephen is more handsome everytime we see him. Glad things are going well.
Keeping you in our thoughts and prayers...
Love,
Aunt LuAnn
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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!!