Stephen's Journey: Weekend in Pictures

Monday, September 23, 2013

Weekend in Pictures

All three of us are recovering from colds and the sniffles, but we managed to have a great weekend either doing nothing but watching TV or enjoying the Bluemont Fair in Bluemont, VA. And best of all, Stephen had his last home infusion of IV antibiotics on Saturday morning and then a nurse came to the house and pulled out his PICC line. We were shocked to see how long the line was (it went the whole way from his upper left arm to his heart!), but Stephen barely flinched when he pulled it out. Glad to have that behind us and hopefully will never have to do it again. Tomorrow, we have a visit to the transplant clinic at CHOP to catch them up on everything that's happened in the past two weeks and hopefully have good lab work.

1 comment:

AnonymousSeptember 25, 2013 at 4:59 PM
I been a reader for a while and have never commented. I just wanted to say I admire your positive attitude and you have such a brave little guy! Happy to see that he is feeling better again :)
-Jen
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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!!