Stephen's Journey: Fun Weekend

Monday, September 26, 2011

Fun Weekend

Stephen had a big weekend this past weekend full of fun things! It started off on Friday with a pajama day which both Stephen and I loved! Well, probably more me than Stephen :) I can't remember the last time we were actually home all morning to sit at the table, enjoy breakfast and a cup of coffee (for me!), and then just take it easy. I felt a twinge of guilt but quickly got over it!

Saturday was Granddad Steve's 70th birthday so Stephen spent some quality time with Granddad and then we all went out for a special birthday dinner. Despite staying up way past his bedtime, Stephen did an awesome job of occupying himself in his stroller. It's tough right now because he's in such a transition stage between his infant seat and sitting up in a high chair. He's not quite sitting up fully on his own, so those restaurant high chairs don't really work, so he's either in his stroller or on someone's lap. It also makes grocery shopping and Target virtually impossible right now. Big ugh. But he's getting really close to being strong enough to sit completely on his own.

Then on Sunday, we took Stephen to the circus! We got three free tickets from our nephrologist's office (someone donated tickets to the kids), so we figured why not?! It was more of a small performing arts group rather than a circus (no lions or tigers or elephants) but it was fun to take him nonetheless. And thankfully the tickets were free because he only lasted about 30 minutes once the circus started. Oh well!

Here are some pictures from Steve's birthday and one from the circus. Hope you all a good weekend too!

2 comments:

ciaraSeptember 27, 2011 at 8:40 AM
What a great weekend! Do feel bad about a lazy morning, they are important. We are all always so "go go go," its great to just take the time to really enjoy each other's company. So glad all is well.
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KBestSeptember 27, 2011 at 12:57 PM
I took the bumbo to a few restaurants and would request a booth. That way Colin/Sawyer could sit at table height and be comfortable without risking their life in a regular high chair. I would also sit right next to them just in case they got too wild.
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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!!