Saturday, May 25, 2013


Thursday morning was our first outpatient transplant clinic and I think it went really well despite having an extraordinarily cranky toddler. Although, it must have been something in the water Thursday morning, because the nephrology waiting room was full or crying babies and toddlers. Ours was cranky because no one got any sleep Wednesday night, but I have to say despite having no sleep, Stephen did really well during the almost 5 hours we were at the hospital.

We had labs at nephrology, an appointment with the nephrologist and transplant coordinator, then a 2 hour wait until our appointment with urology where they collected a urine sample from Stephen's catheter and then pulled the catheter. He did really great when they pulled the catheter out and has been filling up lots of diapers with that liquid gold every since! It's amazing how these diapers work! They can really absorb and hold lots of liquid! And it's actually kind of fun changing his diapers now. It's so easy changing pee pee diapers!!

The transplant coordinator called Thursday afternoon to let me know how the labs looked and how to adjust Stephen's meds. His labs looked really great; creatinine was 0.2 (which is perfect!) and his Prograf levels were down to a more adequate level. So we were able to go down a bit on his Prograf and his steroids. The Prograf level is the only thing they've had a little bit of trouble with. It's been consistently high, so the docs are just trying to figure out how Stephen's body is absorbing it and adjusting the dose accordingly.

Yesterday we had a really great day despite being stuck inside all day (the weather in Philly was really crappy). Mimi and Poppy came to visit which provided some new faces to play with (which he did all day and night), Stephen finally got a good nap, and he slept through the entire night for the first time in over two weeks which made Mommy and Daddy very very happy!

Here's the little guy having a blast playing with a new set of Legos he received from a really sweet reader in North Carolina who has been following Stephen's story since the beginning. He's such a lucky little guy to have so many people praying for him and sending him well wishes from all over the country!


  1. Dear Lindsey,
    It was great to hear that Stephen had a good report from the clinic. As far as being cranky-geez, who wouldn't be cranky waiting around to see doctors for five hours!!! He looks so amazing--and happy!!! Thanks for the update. Keeping you in our constant thoughts and prayers...

    Aunt LuAnn and Uncle Dick

  2. Dear Lindsey,
    I have been following your blog since I found out about it. I am so glad to hear that Stephen is out of the hospital and doing well. You mentioned that he is talking more and enjoying the honey bear straw. GREAT! Looking forward to seeing you once you get home. You are in my thoughts.