Tuesday, December 24, 2013

Merry Christmas! Ho Ho Ho!

From our family to yours, we'd like to wish you and your family a very Merry Christmas and a wonderful Holiday Season filled with tons of laughter, joy, and happiness!  We sincerely appreciate all of the love and support over the past three years and hope you'll continue to follow Stephen through this incredible journey over the next year.  God only knows what's in store for our brave little Superman, but if I were a betting woman, I'd bet that's it's something pretty spectacular!

Wednesday, December 18, 2013

December Clinic Visit and Weekend Fun

We had a whirlwind of a weekend this past (actually last weekend, 12/15...took me a week to get this posted) weekend full of lots of fun, all capped off with a super awesome visit to the transplant clinic at CHOP!  Bill got back into town late Friday night from a business trip in Miami (yeah, I feel really bad for him too) and Saturday morning we started our fun adventure here in Virginia by taking Stephen to see Sesame Street Live at the Patriot Center (at George Mason).  This was the first time we attempted a "big" show since the time we attempted the circus when we was about 9 months old.  The circus was a bit overwhelming, so it didn't go so well, but thankfully, Elmo was a BIG hit!  It was so fun watching Stephen get excited each time all the characters came on stage to dance and sing and watch him groove along with the music.  I originally cringed when I saw what they were charging for tickets, but in the end, it was worth every penny to watch his little face and see his eyes light up with excitement!

Then it was back home to quickly pack up for a trip to Pennsylvania and to try to beat the snow.  We left at just the right time, because by the time we made it the two hours to York, the roads were completely covered with snow.  They ended up getting about 6 inches that evening, which made our special train ride the next day, that much prettier.  My parent's wanted to take all the grandkids on a special Christmas steam engine ride through the southern part of York county.  While Stephen was a bit apprehensive at first, once the train started moving, he got excited and had a fun time with his cousins.  Half-way through the train ride, we picked up a very special visitor all the way from the North Pole and Stephen got to see Santa for the first time this Holiday season, which made the ride even more fun.

And bright and early (6am) Monday morning, the three of us , Bill, Stephen, and I, made the trek to Philadelphia for Stephen's monthly transplant clinic visit.  It was so nice having Bill along with us this time and it definitely made the trip easier.  Plus, Stephen got to sit on Daddy's lap this time while getting his blood drawn, and I think that made it easier too.  I'm happy to report that all of Stephen's numbers were perfect this time! His BK virus levels are at an all-time low and his white blood cell count and ANC levels are at an all-time high; and everything else, his creatinite, BUN, and prograf levels are all stable.  These were the best results we've had since May/June!  And as a special treat and because Bill was along with us, we went to lunch at our favorite deli in Philadelphia after we were finished at CHOP.  Bill's parent's would bring us take-out from the Famous 4th Street Deli while Stephen was in the hospital and we fell in love with their decadent treats and awesome sandwiches.  If you're ever in Philly and want a great place to grab a bite to eat, breakfast or lunch, the 4th Street Deli definitely won't disappoint!

So all-in-all it was a great weekend full of fun, laughter, and totally awesome kidney numbers! And now we're just looking ahead to Christmas, followed by a special day on January 4th; Stephen's 3rd birthday!!

Stephen is in a Sesmae Street Live trance!

Friday, December 13, 2013

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.

Sunday, November 3, 2013

Happy Halloween 2013

Stephen was a fireman for Halloween this year; he decided he wanted to be a fireman or a race car driver and in the end, the fireman won out.  My Mom helped me put this costume together for him with a coat I purchased a few months ago at Costco, a firemen's hat, a pair of red suspenders, and some duct tape.  It turned out really adorable without spending a bunch on a costume he'll never wear again.  Once Bill and I finally got him into the whole thing and he got past a bit of a meltdown, we headed out for some trick-or-treating.  We hit up a few houses on our street and Stephen had a blast telling everyone "Happy Halloween" and "thank you" and "you're welcome!"  We had been practicing say "trick-or-treat for the past week.  It was so adorable! And after it started raining a bit, we decided we would jump in the car and drive over to our local firehouse and drop off some candy for the real-life firefighters and EMTs.

As we pulled up, they were pulling out to respond to some sort of incident, so we figured we would just drop off some candy and leave.  But the guys invited us into the station so Stephen could see all the trucks!  You should have seen his eyes! He didn't know what to look at first!  All of the firemen and EMTs were so nice and allowed him to climb into one of the fire trucks and touch the ambulances and the Fire Chief's car.  And they gave him a treat and we all took pictures and they told us we were welcome to come visit anytime. And I found out they'll bring a firetruck to the house for his birthday!! It was so beyond anything we ever expected and just to see how happy and excited Stephen was, was just beyond awesome.  Of course we told them a little about Stephen's incredible journey and one of the EMTs was amazed at how good he looks for all he's been through and we couldn't agree more!!

And then once we got home, Stephen staked out a spot at our front door to say "hi" to all of the trick-or-treaters and to hand out candy.  It was so cute!!! He stood at the front door and yelled "hi kids!!" to everyone that came by, and then told them all "your welcome" and "bye kids, see you soon!" It had us laughing all night long!  

He just continues and shock and amaze us every single day!  And I bet there will be another visit to the fire station in the not to distant future!

Thursday, October 24, 2013

Pumpkins...and other stuff

Let me tell you something...we have been up to lots of fun things lately!! Bill was out of town last weekend and I had to take Stephen to CHOP on Monday, so we spent the weekend in Pennsylvania hanging out and spending time with my parents and Stephen's cousins.  I've been dying to take Stephen to a pumpkin patch since he can actually run around and enjoy it this year and have fun, but the weather has been pretty crappy here in Northern Virginia on the weekends and I have a hard time dropping $15 a person just to get into a pumpkin patch!  Being from Pennsylvania, I think it's totally crazy what farms around here charge for stuff like this.  So, while we were up in PA, we took a trip to a really cool pumpkin patch with Mimi, Poppy, Aunt Jess, Norah, and Chloe and had a blast! 

Stephen also had his first hay ride and loved every minute of it!  I was a little worried he would panic and want to get off, but he really liked it! He's WAY into trucks, tractors, and cars right now went crazy when he saw the big, old, blue tractor!


It continues to amaze me each time we visit my sister and her girls how much Stephen LOVES his cousins!! He's still at the phase where he just wants to be around them all the time and play with them and do whatever it is they are doing. We went out to lunch afterwards, and all three kids just entertained each other and the girls, especially Norah, look out for him and help him so much.  I'm hoping that it continues for many years because it is just so darn cute! And I'm hopeful that when Stephen finally starts preschool, he'll feel that way about other kids at school too (especially with his eating and potty training).

On Monday we made the trek to CHOP with the hopes that it would be our last every two week visit.  Dr. B has told me the last time that as long as Stephen's labs were stable last week and this week, we could go to visits once a month.  Although the lab here in Virginia screwed up last week and only ran the one set of labs instead of two (the doctor has ordered a CBC and metabolic panel and the lab only ran a CBC), what they did get looked good.  So I was very anxious to get the results of Monday's visit!  And everything looked great!  His white blood cell count and ANC were stable (still a little low, but no lower than they were), his creatinine is still a stable 0.3, and his prograf level was perfect!  So we got the go ahead to skip a few weeks!!  Hallelujah!  The drives between Virginia and Philadelphia are really starting to kill me, so I'm so happy to skip a few weeks!

Oh and I learned that both my child AND my dog seem to have adverse reactions to drugs.  Our vet prescribed Mabel some doggie xanax because she has such bad anxiety, especially in the car, but wouldn't you know it, my dog has the 1 in a 1,000,000 occurrence of an adverse reaction to the drug and went C.R.A.Z.Y! She literally went crazy for about 8 hours, including the car ride. It was a super fun trip up to PA! 

But other than that, all is good! I'm still working on the whole preschool thing, but feeling optimistic about my chances of finding a nurse through care.com.  And Stephen is continuing to improve on his food eating skills.  His foods of choice are still chips and pretzels, but he's now added jelly beans, candy corn, Fritos, popcorn, and the occasional cookie to the mix.  But more importantly, he's willing to pickup and try some different foods including a pickled carrot last week while we were out to lunch with his cousins.  Hopefully the trend will continue and by the time Christmas rolls around, he'll be ready to chow down on my Holiday treats!