Monday, June 10, 2013

One Month Kidney-Anniversary

Yesterday marked one month since Stephen's transplant. Luckily, we got to spend the day with family celebrating my Dad's (Poppy) birthday in York, PA instead of being cooped up in our Philadelphia apartment (we're really feeling the 800 square feet today after being trapped instead all day because of the rain). And on Saturday we finally got to see Uncle Dick and Aunt LuAnn after months and months of trying to coordinate a visit when Stephen wasn't sick. Those of you who read the blog a lot will recognize that name; Aunt LuAnn is a faithful commenter!! Thankfully, Stephen was on his best behavior and was lots of fun on Saturday. Our biggest challenge right now is curbing his "roid rage" caused partly by the steroids he's on and partly (I think) by the Terrible 2's. They are in full effect!

In other kidney news, things are still looking really good. The biggest challenge for th doctors right now is getting Stephen's white blood cell count up. It was really low last week, so they changed up some of medications by eliminating one that causes a decrease in white blood cell count (an antibiotic) and adding two others to replace it. Today, his white blood cell came up a good bit, but his Prograf levels were back up a bit, his creatinine was up by 0.1, and his EBV levels were slightly elevated. Nothing to be concerned about yet, but they're going to tweak some things and decease his Prograf again and hopefully by Thursday things will even out again. We are planning on moving back home to Virginia next Saturday, so I really want things to get straightened out before we go home and our visits decrease to once a week.

The plan right is to move home on the 22nd, but then come back for visits one time a week. Most likely, we'll drive up on Sunday nights, stay at the Gift of Life House and have our clinic visit Monday morning. Then hopefully we'll be out of there right around nap time and Stephen will sleep the whole way home. At least that's the plan for now. But we'll be heading home to Virginia again this weekend to celebrate the nuptials of our friends Jamie and Erik. Can't wait to relax and let loose for an evening!! And maybe, just maybe, sleep in a bit since Stephen will be at Nana and Poppa's house! Woo hoo!!!!

Also just wanted to let you all know that Kristin is also doing really great. She told me she a bit fatigued by the end of the day, but otherwise is feeling great. Thank The Lord!! She has her 6 week follow-up appointment coming up and I'm crossing all 10 fingers and toes that she's given a clean bill of health. It's just such a miracle that she's part of our life and that everything has gone so amazingly well for her and Stephen. It really is so crazy to think about what they both have gone through and how far they've come in a few short weeks!

Well someone just finished their dinner (evening tube feed) and is asking to play with his duckies in the tub. So I'm off to get soaked by a two year old crazy boy and love it!! But wanted to share this awesome collage of photos with everyone. My friend Heather had organized a "flash love mob" on the day of Stephen's transplant. Friends and family sent us pictures of Stephen and Kristin's names written on their hands to show their love and support. It was so awesome!! And I made sure to keep them all so we could remember that feeling and share it wi Stephen one day. This will definitely be going up somewhere special in our house when we get home!


  1. Hi Lindsey,
    Saturday is one of those days you remember the rest of you life!! To drive up to Poppy's house and see Stephen kicking his ball in the driveway was simply incredible. To think that only a month ago he received his "gift of life" (thank you Kristin!!).
    For all of you out there who follow this blog...I truly hope that someday you get to meet our SUPERMAN and be on the receiving end of one of his "high fives" or "fist bumps" or even better, get a hug and a kiss from one of God's true miracles. It puts life into perspective and you see what is really important.
    Stephen is an amazing child and his personality and smile will melt your heart...

    Aunt LuAnn and Uncle Dick

  2. So happy to hear that you all are doing well!

  3. I will try to share what my boys did to my phone last year. .... Actually I can't upload the photo...
    When Stephen was visiting his grandparents here in Va. for Hallowe'en, we took photos of him in his skeleton shirt. He was about 9 months old.
    Over a year ago, my boys changed my phone wallpaper photo to "Baby Stephen." We think of him when we see this and pray for him often. :-D
    You are loved, "baby" Stephen, and you are very blessed.
    Looking forward to playing with you before long ...
    the Raines family