Stephen's Journey: Long Day

Tuesday, August 30, 2011

Long Day

Today was such a long, crazy, stressfull day, but in the end a very good day! We had a very long consult with the new GI doctor in DC this morning (very early this morning) which was emotionally and mentally draining, but so incredibly helpful and worth all of the work; a fantastic speech therapy appointment that left me with so much to think about and like this morning's appointment, left me with TONS of questions for our nephrologist and nutritionist; had to pull the trigger and buy Stephen a new car seat since he's outgrown his infant car seat and needed to get it before we attempt our first trip to the beach this week (those darn car seats are crazy expensive!!!); and met up with one of Stephen's NICU nurses, Jess, for happy hour which was the perfect ending to a long day! You might remember, Jess and I actually went to high school together and she was working in the NICU the night Stephen was born and she became one of Stephen's primary nurses. I had no idea that Jess lived in Virginia, let alone lives right down the street from me and was a nurse at Fairfax hospital! Such a small world!! So it was such an amazing and welcome surpirse to find out she was there the night Stephen was first admitted to the NICU.

I have so much to share about our appointment today with Dr. Kerzner and Stephen's speech therapist, but to be completely honest, I'm too lazy to do it tonight. So....I'm going to pack it up for the night and work on getting a post up tomorrow. :)

Have a good night!!!

2 comments:

AnonymousAugust 31, 2011 at 10:06 AM
Hi Linds,
We thought about you all day--Glad to hear that it was successful....
Love,
Aunt LuAnn
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ciaraSeptember 1, 2011 at 9:16 AM
I am so happy to hear that you had such a good day. i do not doubt for a moment that it was mentally exhausting, but i am sure its worth it to be getting great care for Stephen! Thinking of you always - Ciara
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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!!