Stephen's Journey: I've got a....

Tuesday, June 5, 2012

I've got a....

CRAWLER!! Stephen crawled all by himself for the first time yesterday during our weekly physical therapy session!! Yippe!!! He crawled about 6 "steps" all by himself. Slowly but surely our little guy is going to become more independent. He stills needs some assistance with the transition from sitting to crawling and back up again, but I can really tell he's on the verge of doing it himself. We just need to get him doing it a lot more. Practice, practice, practice. Although the little bugger freaks out whenever I put him down on his tummy, but shows off every time his therapist comes to work with him. I guess it's a parent thing.

Here's a pic from yesterday afternoon practicing after therapy

3 comments:

AnonymousJune 6, 2012 at 3:06 PM
Wow!
These legs were made for walking....and that's just what they'll do....and one of these days (soon) these legs are going to walk all over you....are ya ready legs...start walking.....

Way to go Stephen!!!!

Love,
Aunt LuAnn
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AnonymousJune 6, 2012 at 3:35 PM
Wow! For all that he has been through, his delays are not all that... delayed? That's awesome.
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AnonymousJune 7, 2012 at 3:50 PM
He is doing so well, thanks to all the help and encouragement from Mommy, Daddy, Mabel, and all his nurses, therapist and doctors. Congratulations to all who are involved.

It's so encouraging to see his progress from last Summer to this Spring. What a difference -- Way to go Stephen!

Love you all ...... Mimi & Poppy Noll
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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!!