Tuesday, August 27, 2013


No news is good news!!! We had awesome labs last week so we packed up and headed to the beach! It was a long ride down to Southport, NC, but Stephen did great (way better then Mabel), made some trucker friends along the way at a truck stop (he learned the all important "honk" symbol), and has been having so much fun exploring Nanie and Poppa's beach house.  We took him to the beach on Sunday not really sure what was going to happen, but after a few tears and about two hours of not leaving the blanket, he finally ventured down to the water; but definitely not without his dump truck! He ended up having a blast digging holes and running back and forth from the water to the beach as the waves came up. And after a while, the tide went down exposing a very wide sand bar, and he ventured out into the ocean. I'd say the beach ended up being a big success and life after transplant is soooooooo good!!

Friday, August 16, 2013

Slight Change

Bill took Stephen for labs in Virginia on Thursday (his first time taking Stephen by himself to an appointment and he did great!) and his white blood cell count and ANC came up slightly, but not enough, so Stephen will need three more neupogen shots this weekend before we repeat labs next Wednesday at CHOP.  Thankfully, I'm headed out of town, so it's up to Dad and Nana to conquer the shots! But after our "training" session last night, I'm confident they'll do an A+ job! 

I'm actually on the train as we speak, passing through my home-away-from-home, Philadelphia, en route to NYC to spend the weekend with my best friend. And very excited about it! And also pretty excited for Bill that he gets to spend some good TLC with Stephen. With all of our (Stephen and I) travel lately to CHOP and with Bill's busy work schedule, they haven't gotten to spend as much time together as they both would like. Bill is certainly Stephen's favorite person right now and vice versa, and I know they'll have fun together this weekend! And hopefully I'll have some super cute pictures to share of my two favorite people.

And then it's off again to Philadelphia on Tuesday for a clinic visits at CHOP on Wednesday and hoping his numbers continue to improve and I can't stop worrying so much! Ha! Yeah right! 

Monday, August 12, 2013

Tough Clinic Visits

I apologize for the lack of a post following last week's clinic visit, but it's been two weeks in a row with not-so-great news.  Last week was a stressful visit at transplant clinic and this week was much of the same. And not just because of the lack of sleep, spending way too much time in the car, or waiting hours at the hospital to see the doctor with an antsy 2.5 year old! Stephen's blood work hasn't  been great the past two weeks and I just wish his blood work would match what we see on the outside. It's very hard to explain exactly how things are going to people when your child is running around like a mad man, chatting and singing up a storm, and all around doing so awesome by the looks of it; but, what's happening inside his body isn't reflective on the outside. He's still having trouble with his white blood cell count (this week was an all-time low) and now fighting a virus called the BK virus.  It's not a virus that manifests itself as a cold or sore throat or anything like that (in someone who is immunosuppressed), but rather a virus that has the potential of hurting his new kidney. So we have started a new medication to help fight off the BK virus, will stop his cellcept today, and start the neupogen shots again.  And with all of this happening, I will have to continue to take him to Philadelphia every week (we were supposed to start every other week visit today) with labs at home in between and have been asked to keep him away from lots of people until his white blood cell count comes up. Here's hoping the shots and the new medication combo works and things start looking up super quick!! We could just use some good news for Mr. Stephen!!

Monday, August 5, 2013

Fun Night

Stephen and I are back in Philadelphia tonight after a nice little vacation to the beach last week. Bill and I spent a few days in NC while Stephen spent his vacation at Nana and Poppa's house. A great little break for everyone! And best of all, we got to spend some time with Stephen's kidney donor, Kristin and the whole Freeman family while down in North Carolina.

After checking into the Gift of Life House, we strolled over to one of our favorite parks; Franklin Square, to enjoy the awesome weather and check out the fountains. While there we also shared some yummy french fries, chased some bubbles and ran through the grass barefoot. And...we got to finally meet one of our good kidney friends; Parker and his Mom and Dad, Kristen and Jason. Kristen and I have become good friends over the past two years, bonding over our little super boys, but we haven't had the opportunity to meet until now. The Porche's live outside of New Orleans, but are here at CHOP this week while Parker is evaluated for his kidney (and possible liver) transplant. Parker and Stephen have the same birth/infant story and the exact same disease and connected long ago while Kristen was still pregnant and Stephen was just a little baby. I'm so happy we finally got to meet, although wish it were under different circumstances for sure. You can read more about Parker and his journey to transplant here: http://parkersfightagainstpkd.blogspot.com/

Here are some pictures of our fun night. Now lets just hope the fun continues and we get some awesome lab results tomorrow at transplant clinic (and some sleep for Mommy!)!