Stephen's Journey: More pics

Friday, April 29, 2011

More pics

Here are some more pics of my love bug chomping away on his fist. We are trying to get him to learn to suck his thumb so he's not so dependent on his pacifier, but he has trouble opening up his hand to release his thumb. But it sure is funny watching him try to shove his entire first in his mouth!!

5 comments:

AnonymousApril 30, 2011 at 10:25 AM
What a handsome lov bug he is.....
Grandma Tish
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AnonymousApril 30, 2011 at 1:52 PM
He is such a cutie!! Those beautiful eyes are going to break a lot of little girls' hearts someday!!!!
Hope he is feeling better today...
Thinking of all of you.
Love,
Aunt LuAnn & Uncle Dick
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ciaraApril 30, 2011 at 6:37 PM
Embrace the pacifier(paci, as we call it) - dont try to fight it!!!! they are the greatest things ever. My pediatrician said that they can have them as much as they want, and if you take it away at 7 months, they will forget about it in a day. (P.S. we still let vivienne have her's).
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lehighfillApril 30, 2011 at 7:20 PM
Adorable pictures! I hope you guys can get home soon. Thinking and praying for you every day!
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KBestMay 1, 2011 at 8:11 AM
You can always take away the pacifier but you can't take away the thumb :)

Thinking about you guys this weekend
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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!!