November 2013

I have been a terrible blogger; yet again.  I have really fallen off the wagon this time and I apologize for not keeping you better updated on the how, what, where, and shenanigans of Master Stephen Schwartz.  I was sitting at work yesterday reading an article on Huffington Post (an AOL product AND during my lunch break) written by a Mom of one of the little girls killed at Sandy Hook Elementary School and it dawned on me that I desperately need to share Stephen's smiling little face again.  I know every single person feels a connection to that tragedy because it's just so heartbreaking and let's face it, because they were innocent little children, but like so many big news stories over the past three years, Stephen was in the hospital when it happened last year.  I was sitting in the waiting room outside of the pediatric ICU at INOVA Fairfax hospital that morning when the news came on the TV.  It blows my mind that Sandy Hook and that hospital was just one year ago!  It's hard to believe that one year ago, my little boy was so sick.  I always understood the seriousness of Stephen's health when he was in the hospital, but once we got home and things got "back to normal" I pretty much forgot he was sick.  But now, reflecting on the past three years and seeing him now and what he can do, I can now really see that he was so sick every single day of his life up until he received his new kidney. 

So….I was trying to figure out how to describe Stephen, the way he is right now, in one word; but the truth is, I can't! He's so much like a normal toddler right now, it's crazy!  Sweet, loving, surprising, playful, and energetic, but stubborn, emotional, a lil' bit crazy, and a BIG button pusher all at the same time! A total rollercoaster! Like I said...a typical toddler!

The last time I posted, it was Halloween.  And since then we've only had one doctor's appointment!  Pretty amazing!!  He was last at CHOP on November 19th for transplant clinic.  All of his lab work was great, we were able to drop two medications (nystatin and valcyte), Stephen gained a couple of pounds, and grew one whole inch!  It was a fantastic visit, although the blood draw was a bit of a mess.  When we were going for labs twice a week and even once a week, Stephen was a champ in the lab.  But now that we only go once a month, he freaks out pretty good.  But it was super exciting to see that he grew a whole inch, which is a big deal considering we used to give him growth hormone injections every night since he was 6 months old.  He's even out grown his new shoes which we just got at the beginning of Fall!  And even the pants that Nonnie had to shorten (she's our resident seamstress) in October, are now too short! 

Thanksgiving came and went quickly, and we spent the Holiday in York for the first time.  Stephen had a blast playing with his cousins, although he was a bit cranky at the dinner table and didn't try any turkey or fixin's.  Hopefully by next year, he'll be eating and he won't be getting his Thanksgiving meal via a tube!  That's our next biggest challenge; getting Stephen to eat.  He's still mostly eating crunchy, salty foods like chips, pretzels, popcorn and french fries.  But lately he has been interested in using a spoon and fork to pick up other foods and will at least put them in his mouth.  So it's been super slow progress and extremely frustrating. The poor feeding therapist had to witness a total breakdown today of both Stephen and Mommy.  We're all very frustrated with the eating. But...he will be starting day care two days a week after the New Year (through the help of acquaintances and strangers on Facebook, I was connected to a mom/part-NICU nurse in our neighborhood that is going to help out with Stephen's tube feeds at day care until the school is comfortable doing it themselves). So I'm hoping with the change in his tube feeds those two days (he'll only get one tube feed, instead of two while at school) and watching all of the other kids eat, he'll start to pick it up quickly.  All three of us are more than ready to get rid of "tubie!" And I'm praying that we can avoid having to enroll in an in-patient hospital feeding program next year (they ween the kids of their g-tubes under medical supervision).

Other new things in Stephen's world include lots of finger and paint brush painting, playing with play dough, singing songs (Jingle Bells is the favorite right now), starting to use the potty, and just all around becoming more independent.  And the past couple of days....playing in the snow!

Next up....going to see Sesame Street Live on Saturday and a fun steam engine ride in York on Sunday and then to PhiladelphiaMonday morning for his last transplant clinic checkup of 2013!!  All-in-all it's been a pretty great month and half!

Here's a montage of photos from the past month, including fabulous photos taken by the lovely and very talented Stephanie Ascari (sorry I chose a bunch of them, but they are all so cute!!).  Stephanie took our family photos exactly one year ago from when she took them this year.  You can see more of Stephanie's work on her website and our 2012 family photos on the blog.  You can click on the photos to enlarge them.