Sunday, April 28, 2013


This is another photo filled post.  Nothing medical or otherwise to report except that we've been taking advantage of the great weather this week and spending every possible minute outside playing that we can because pretty soon, we'll be stuck indoors for awhile!  I'm not jinxing ourselves, so we're keeping mum about what's happening in less than two weeks :)

But I thought I'd share some more pictures of Stephen doing something fun.  Yesterday we went to a really cool event called Touch-A-Truck.  I had heard about events like this one from the moving company we used back in October.  When I took Stephen with me to pick up some boxes from the company's warehouse, one of the guys let Stephen see one of the trucks and then told me that they participate in a Touch-A-Truck event once a year where kids get to touch and climb on all sorts of trucks.  As luck would have it, I thought of it last week and started googling to see if I could find one in our area, and low and behold, there as one near us on Saturday at Robinson High School in Fairfax!! And I knew it would be a big hit since Stephen can't get enough of trucks right now!

He was a little more timid and scared than I thought he would be, but we still had lots of fun and even though he didn't actually climb into any of the trucks (we attempted the fire truck and it didn't go so well) he did touch all of them.  His favorite part, hands down, was sliding down the bed of the flatbed tow truck.  What an awesome idea and all of the kids loved it!! Mine and Bill's favorite part was watching the helicopter swoop in and land in the parking lot.  It was a great event and a big shout out to the Fairfax County police and fire department for being a part of it!!

Saturday, April 20, 2013

School Bus

While visiting my parents in PA this past week, my Mom and I took Stephen to one of the schools she used to teach in and where I went to 4th and 5th grade; North Hills Elementary School. Some of the teachers in the building follow Stephen's story, so we wanted to stop by and say, "Hi!" It was a good thing too because it ended up being a really fun place to be! As we were standing in the hallway chatting, a whole classroom of 5th graders walked by in a single-file line and Stephen was fascinated by the all kids! He stood looking at them waving and saying "hi" and all the kids waved back saying "hi" and how cute he was. One little boy even remarked how cool Stephen's orange Nike sneakers were. It was just adorable! Stephen would have loved to have joined their class and spend the rest of the day with them.

And while we were at the school, he also got to see two big yellow school buses up close and personal. Stephen has a real fascination right now with all types of cars, trucks, trains, buses, bikes and planes. Basically, any form of transportation including tractors and fire trucks. I guess you could say all those classic boy things! And seeing those buses made his day for sure! At one point he even started singing the "the wheels of the bus" and doing the hand motions. It was so darn cute!

Here are some pictures of our "meet and greet" with the big yellow cheese wagon! And kind of a cool picture I snapped of Stephen climbing on a kidney shaped couch at the Art Institute where Mimi is currently teaching. He wasn't too cooperative during the visit to Mimi's new school, so I unfortunately didn't get any good pics there. I think he's just way more intrigued by the little kids at the elementary and not so intrigued by all the "big" kids at the college.


Tuesday, April 16, 2013

New Transplant Date

We've got a new transplant date set: Thursday, May 9th.  Almost exactly one month after his canceled transplant date.  It's a few weeks out, but I'm sure the weeks will go by fast and now that the weather is nice, we can spend most of the time outside.  Which I'm so thankful for because keeping him indoors and away from other kids last time was sort of a challenge.  But this weekend we're actually going for a visit to York to see my family and then we'll only have one more weekend before we "move" to Philadelphia.  Thankfully, we had kind of a trial run earlier in the month, so now we know what to expect.  And I'm trying to pack and take as little as possible since I know whatever we don't have when we get there, we can get.  I really want to only take one car, so we'll see how good my packing skills really are!

But Stephen is doing great.  No signs of any cold, cough, or sniffles.  Just the on-set of the terrible 2's.  For sure!  We're in a cycle of not wanting to nap and then not wanting to go to bed at night. And the worst of all....not wanting to wash hands.  Which for him is not so good.  It's been a challenge, but I have to be "mean Mom" when it comes to the hand washing and hold him kicking and screaming at the sink. It's such a must for him now and post-transplant. My hope is that he'll eventually get it by having Daddy help wash his hands when he's home instead of me.  Isn't that just lovely how that happens?!!?! But with our upcoming visit to Mimi's and Poppy's house, I'm sure he'll be on his best behavior!  Funny how that happens too :)

Thursday, April 11, 2013


I titled this post with a question mark because honestly, I'm not sure what to say....

This day was supposed to have been Stephen's transplant day. At this point in the day, God willing, Kristin would have been out of surgery long ago recovering well in the comfort of her hospital room and Stephen would have been out of surgery, off the ventilator and making lots and lots of glorious pee! But as we all know, that plan was thwarted last week.

But I got the awesome news that Stephen is now negative for EBV! His blood work from Monday came back and he's below the all important 200 threshold. Just like that.

So now transplant is back on (hallelujah)! We just don't know when yet. CHOP needs to coordinate with Penn, who needs to coordinate with Kristin and find a date that works best for them. We're game for any date, so whatever works best for Kristin and her family is what we'll go with.

And just like that, the emotions are turned upside down; yet again. But at the end of the day, it's just fantastic to know that Stephen is right where he needs to be and we can try this all again!

Happy news for a day that we weren't too sure was going to be that happy just one week ago.

Friday, April 5, 2013

Very Disappointing News

I never imagined that I'd ever be saying, let alone writing these words, but Stephen's transplant has been postponed.  I got the call Thursday afternoon around 2:15 PM from the transplant coordinator and the nephrologist that they were postponing the transplant.  To say I was upset, would definitely be understatement.  Instead of sitting on the computer Friday night telling you all about this, I should be frantically packing trying to figure out how we are going to fit 6 weeks of gear and clothes into one car.  But alas, I'm here trying to come up with the appropriate words to describe what happened and how we feel.

I'll try to explain the reasoning behind this in as few words as possible.  Basically, Stephen contracted a virus called Epstein-Barr virus (EBV) in November.  It's what caused the unexplained fevers and sent him to the hospital on two different occasion last November and December. EBV is essentially mono. We've talked with all of his doctors, many times, about the EBV and we were always under the assumption that it was actually a good thing that Stephen contracted EBV before transplant and not after and he was producing the appropriate antibodies to fight it off.  Never once was there a  conversation between any of the 7 or more doctors checking Stephen's immune system that if he didn't actually test negative for EBV, he couldn't get a new kidney. 

The bottom line is that Stephen is still positive for EBV and therefore the doctors all agree that it would be too risky for Stephen to receive a transplant; they would have to lower his immunosuppression to fight off the EBV, leaving him extremely susceptible to rejecting the new kidney among other very bad things.  Stephen's most recent blood work suggests that his EBV "levels" are at 372 and he needs to be at or below 200 for him to be considered negative.  So the plan going forward is to check him each week and as soon as he hits that magical number, they will reschedule the transplant. When that will be is totally unknown.

We completely understand that they are doing this in Stephen's best interest and safety and we'll always do what is best for him, but it was devastating none-the-less.  We had prepared ourselves in so many ways for this and then to have it all squashed in an instant was horrible.  And then to think about how Stephen's donor, Kristin and her family were putting their lives on hold for us and how this might affect them sucked even more.  It was just terrible all around!  Oh and I can't forget the lease we signed for the apartment, the furniture I shipped to Philadelphia, all of Stephen's medical supplies that had been delivered Thursday morning to our apartment building, and the fact I hadn't ordered any of his supplies for April because he wasn't supposed to need them!  And even down to the little things like the fact I had pretty much completely emptied my fridge for the trash pickup on Thursday morning, said my goodbyes at work and canceled the newspaper.  It was just a huge mess.

But....we've gotten everything pretty much straightened out with the whole logistics of the move and Bill and I are actually going to drive up to Philadelphia this weekend to pick up the medical supplies.  And we can only hope that this is a minor setback and by this time next month, we'll be back on track for transplant.  The doctors feel that Stephen is adequately fighting the virus and his levels should continue to decrease fairly quickly.  So here's hoping they're right!

Yesterday was definitely a really tough day, but today was better, and by Monday this will be just be a blip on the radar screen.  And like so many of the really bad days we've had through this journey, we'll be able to look back in a few months and say, "Can you believe that happened?!" as we put Stephen to bed without any of the tubes or machines keeping him alive.  We've gotten through some really tough bumps in the road, so I know we'll come through this one too.  But for now, it's feels good just to climb into bed with a book and try to sleep away the disappointment.


Wednesday, April 3, 2013

Easter 2013

I hope everyone had a very lovely Easter this past Sunday. We had a very nice, albeit quiet Easter this year despite planning for a fun and rambunctious Easter. You might have seen the pictures of our Easter morning I posted to Stephen's facebook, but I'll share the full story here.

The plan leading up to Easter was for my whole family (parent's, sister, brother-in-law, and two nieces) to spend the Easter weekend at our house. It was going to be our first holiday all spent together at my house, and I was super excited! I was also super excited that my nieces were going to be coming to play with Stephen! Bill was leaving town on a business trip on Saturday and would be gone for Easter, so I was really happy to have the company. But a few days before Easter, panic set in about exposing Stephen to germs and just as I was about to call my Mom to decide what we were going to do, my sister called to say my youngest niece had an ear infection. Thankfully, that made the decision for us; my sister's family would stay home since her girls weren't feeling well and we didn't want to expose Stephen to their germs. Definitely a big disappointment, but it was surely was the right decision with transplant literally right around the corner.

Well, wouldn't you know, Stephen got sick anyway! By Friday evening, the little guy had a full blown cold and by Saturday morning he was a mess with a running nose, cough, congestion, and throwing up. We attempted to go to the zoo Saturday morning to get some fresh air, but he ended up puking all over himself on the way and that ended the trip. Thankfully, my parents came to visit anyway (the stayed Friday through Sunday), so we weren't home alone for Easter and I had an extra two set of hands to help (and comfort Stephen during the night because there was no sleeping Saturday night), but it was definitely not the big party we had hoped for.

But we had a nice weekend anyway and were able to get outside Saturday afternoon and enjoy the sunshine. And of course, the Easter bunny visited our house and Stephen got some of his favorite things; Elmo, bubbles, cars, and trains. Thankfully, he's feeling much better and the two nights that I was "single mom," he slept the entire night. THANK GOD! But the little snot monster passed all his germs to me and now I'm the snot monster. Yuck! Look out Mimi and Poppi...I'm sure it's coming your way next! As long as we all can get healthy by the end of the week, we'll be A-OK for next week. We've got one more vaccination this week, another Hepatitis B booster, and then we're ready to rock! The crib and mattress arrived at the apartment today and his dialysis supplies will arrive on Thursday. It's so real now, it's scary!! I'll post more this week about our plans for Philadelphia, transplant, and how you can reach us and/or come see us while we're at CHOP and in Philly. We'd love to have visitors! :)

In the meantime, enjoy some of our Easter pictures! But please excuse the picture of me with my glasses and sans makeup.