Stephen's Journey: This Week in Pictures

Friday, March 8, 2013

This Week in Pictures

Not much new to report on the medical front, so I thought it was high-time I shared some recent pics of Stephen! Enjoy!!

Stephen and Mabel admiring the snow on Wednesday morning. The western DC suburbs got snow (we got somewhere around 6"), but Snowquester was a bust inside the beltway.

Stephen went to the dentist for the first time yesterday. This is his before shot and the next is the after shot. You can see a remarkable difference! We thought his teeth were stained so yellow from both the kidney disease and all of the medications. But it turns out, that it's really because he doesn't eat. Eating helps to get rid of plaque and "junk" that builds up on our teeth. It took three people to hold him down for the dentist to "scrape" his teeth, but I think it was definitely worth it! And Stephen survived despite what the "after" pic shows :) The tears came from Mommy prying the camera away from someone's little fingers.

Helping Mommy decorate the house for Spring and Easter.

Helping Daddy shovel the driveway

Checking out the cool new library around the corner from our house.

Hangin' at Mimi and Poppy's house in PA for a few days last week.

4 comments:

AnonymousMarch 8, 2013 at 8:07 PM
Stephen is just too cute! I loved the picture with the daffodils. Uncle Dick is working on Stephen's plane as I write. Construction is almost completed then comes the finishing. Hopefully we can get it down to you folks before you leave for Philadelphia. Talked to Poppy this week and he said Stephen is doing wonderful. Keep up the good work Mom. In our thoughts and prayers constantly.
Love,
Uncle Dick & Aunt LuAnn
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AnonymousMarch 11, 2013 at 9:31 PM
Sweet, sweet photos and so nice to see Stephen having a relaxing day at home. He defines the word cute. Thanks for sharing.
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AnonymousMarch 13, 2013 at 3:43 PM
Adorable pictures!
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AnonymousMarch 20, 2013 at 2:54 PM
Stephen is so amazing! I am truly inspired by his story and the compassion both you and your spouse have. Wishing you all well and keeping you lifted in prayer.

-M.Adams :-)
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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!!