Stephen's Journey: Morning Date With My Guy

Tuesday, October 15, 2013

Morning Date With My Guy

After labs this morning at the hospital here in Virginia, we had a fun Starbucks date along with monster truck bus; shockingly enough, it was our first Starbucks date despite my Starbucks addiction! Last week's visit at CHOP was great and everything has been pretty stable since his blood infection last month, but the doctors wanted to do one set of labs this week at home in VA just to make sure things continue to stay stable (they are still closely monitoring his white blood cell count). If all goes well after our visit next week at CHOP, we will be able to go to once a month visits! I'll be doing the happy dance all the way back to Virginia after getting that news!!!

Disclaimer: I should note that in between labs and our Starbucks visit, we stopped at Bed, Bath & Beyond so I could re-stock up on Starbucks k cups. Clearly, I have an issue. And now you know my secret :)

3 comments:

AnonymousOctober 16, 2013 at 7:37 AM
Good Morning Lindsey,
Our new computer arrived and was set up this weekend. Hurrah!!! Now if I can only figure out how to use it!! I am such a luddite when it comes to these electronic gadgets.
We are so happy to hear that Stephen is doing great. He just gets cuter by the day!!! Looks like he is enjoying Starbucks as much as Mommy!!
Hope you folks are taking advantage of the beautiful autumn weather and that Superman is getting ready for Halloween.
Keeping you in our constant thoughts and prayer....
Love,
Aunt LuAnn and Uncle Dick
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AnonymousOctober 16, 2013 at 2:21 PM
Looks like you guys are having fun. I wish you and your family many more good reports and good times.
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AnonymousOctober 16, 2013 at 4:47 PM
No surprise to Mimi. When Stephen and I were driving out of your neighborhood last Thursday, we took a right turn toward the corner. Before we even got to the corner to again turn right, Stephen chirped up and asked if we were going to "Starbucks, Mimi"? Guess he can not only now use the iPad, knows most of the alphabet, has increased his vocabulary dramatically, but has now become Mommy's GPS direction finder to all neighborhood Starbucks shops!!! Well done, Stephen, buddy. Love You!
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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!!