Stephen's Journey: Vacation

Monday, September 5, 2011

Vacation

Our first vacation with Stephen went off without one glitch! We actually just got home less than an hour ago, but I couldn't wait to get some pictures posted of Stephen enjoying the pool and the sunshine. He did so great on our trip that we're already working on planning the next. Not only did he do great at Nana and Grandpa Schwartz's in North Carolina, but he did fantstic in his new car seat on the drive down and back (and it's a 6.5 hour trip each way), slept great in a new environment (including 3 sleepovers with his buddy Patrick in the same room while a party raged outside his room), was happy pretty much the whole time, and LOVED the pool. We couldn't have asked for a better trip! And Billy and I were able to get a little R&R, ejoy some "adult" beverages, and more importantly for me; some sun! I'm definitely not super tan, but at least I'm now not totally pasty white! :)

Now it's back to business as usual until Friday when Billy and I take off for the weekend. We're heading up to State College for the PSU/Alabama game and couldn't be more excited. And Stephen will be spending the weekend with Billy's parents here in Virginia having a grand time.

I hope everyone had a great Labor Day weekend!

3 comments:

AnonymousSeptember 5, 2011 at 6:15 PM
so glad y'all had a nice/relaxing vacation! You deserved it! Love and miss y'all :)

Emyle Lawrence
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ciaraSeptember 6, 2011 at 2:53 PM
so glad you had a wonderful trip. No body in world deserves it more than you guys!
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AnonymousSeptember 7, 2011 at 9:43 AM
Dear Lindsey and Billy,
So glad to hear that you folks had a great weekend with Superman. Keep those photos coming--they made our day.
Love,
Aunt LuAnn and Uncle Dick
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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!!