Friday, June 14, 2013

Great Ending!

Bill took the train back up to Philly from Virginia late Wednesday night to go with Stephen and I on a marathon CHOP visit yesterday. We had lab work, transplant clinic, a visit with the nephrologist, an ultrasound of his bladder, and an appointment with urology. It's no easy feet occupying a toddler at a doctors visit, let alone all those appointments and right in the middle of nap time. Thank goodness Bill was able to be there and thank god for iPads!!

The labs and appointments went great and Stephen turned on the charm like always for the doctors. He now calls Dr. Baluarte, "B" and lets him pick him up, lay him on the exam table and do a total body exam. We just sit and watch from across the room and smile. It's so awesome to see your child do well with the doctor and actually participate in the exam (he puts the stethoscope on his chest and belly and opens his mouth and lifts his shirt to show his belly) and not freak out. And the lab sticks are still going great! He fights a bit, but it's over quick and then it's sticker time!

Our appointments were spread out throughout the morning, but someone suggested we just go to ultrasound and ask if there was a cancellation because of the bad weather (we a three hour wait between appointments). Luckily, both ultrasound and urology fit us right in without much of a wait. Unfortunately, the ultrasound didn't go as well as the labs and Stephen freaked the whole time even with him laying on Daddy's chest and watching Sprout. Something about making him lie down gets him so freaked. But she was able to get some decent pictures of his kidney and bladder and Dr. canning, the urologist was able to tell us that Stephen's bladder is holding 12 cc's now; up from 5 cc's pre-transplant.  It's still super tiny, but it's growing and hopefully within a year he'll be able to hold it long enough that maybe we can start potty training. It will take some time, but it's a step in the right direction.

We also scheduled Stephen's stint removal with Dr. Canning for Friday, June 28th. Originally, we were going to wait until then to remove the staples, but Dr. Canning suggested maybe we attempt to remove me over the next few weeks while we're still in Philly and coming to CHOP on a regular basis. So the resident doctor came in and removed 1/3 of the 31 staples. Stephen of course didn't like it, but they came out very easily. If you've never had staples (I haven't) they actually use these little metal pliers to pull them out. They actually sent them home with me because we're going to go back on Tuesday morning and remove another 1/3 of them. I'm glad they removed them because leaving them in this long would have left little railroad track scars all the way down his incision for sure. The ones at the bottom especially need to come out because they don't get much air. And I think he'll be a bit more comfortable without them too.

After we finished up at CHOP, we raced back to the apartment, packed up some things, and headed out to beat the storm and get home to Virginia for the weekend. We're so excited to be home and I can't tell you how great it is to be sitting at my kitchen table writing this blog post, eating some lunch, and feeling a sense of normalcy. I've been sifting through all the weeks of mail and catalogs and I can't tell you how much I've been able to get done just this morning so far! It feels to have mundane things to do like laundry and bills and cleaning. And Stephen loved playing in his playroom this morning! I was in the kitchen this morning cleaning up and realized things were way to quiet in the house so I went to find him. He was playing with some of his cars, talking to himself and happier than a clam while the dog looked on. It was so awesome to see! And I pulled out his little train table this morning that he hasn't played with in months and we found some match box cars in it. He went crazy! It was so great! Now he's just snoozing away up in his cool, dark room. And he slept great last night at home!

Such was not the case the other afternoon when I checked the monitor and found him undressing himself instead of napping. He had his shirt pulled up over his head Beavis and Butthead style. It was hilarious albeit annoying that he wouldn't go to sleep!


  1. Super, wonderful, outstanding, happy news for all of you. You are all heros in this story and we look forward to continued posts about Stephen's progress and growth and happy times for your family.

  2. Lindsey,

    LOVE the photos from the monitor. So happy that he feels good enough to just be a normal little boy. That is priceless! Also happy for you that life is starting to feel normal again. I hope that you have a great weekend!

    P.S. Thanks for the lovely card.

  3. Hi Linds,
    I was away from the computer for the last two days and was happy to find the blog waiting for me. We are so happy that Superman had a great report from the doctor and is enjoying himself at home. Hope you received the pictures of the plane. I am sending copies of the photos I took of Stephen at your Mom's last weekend. They are super!!! I would send them to you via e-mail but I am such a luddite when it comes to digital cameras and computers. Enjoy you weekend at home!!!
    Aunt LuAnn

  4. Yeah, what a great post. So glad to hear that you got home for the weekend and were able to feel "normal" again; pretty soon that will be your everyday!!!