Friday, February 13, 2015

It's Been a Rough Winter

January and February didn't disappoint and turned out to be yet another germ-ridden month. Meaning, Stephen got sick again....and then sick again this week.  This Winter really has been terrible in terms of illness and I'm hoping that this year is just a fluke and we won't have this every year going forward!  I don't think Stephen's been in school one full week (he goes three days a week) since the beginning of October before we went to Disneyland.  Since his Make-A-Wish trip over Halloween, he's been hospitalized twice and has had four different viruses.  It's crazy!

Thankfully though, none of the illnesses happened last week while Bill and I were in Miami.  He got sick with an ear and lung infection before we left, was fine while we were gone, but when I picked him up Tuesday morning from Mimi and Poppy, he was sick again (I spoke to him that morning and he was great, and within the hour, he was sick).  His pediatrician thinks the antibiotic for the infection worked to suppress whatever virus or illness he had while we were away, but once the antibiotic stopped, the fever, runny nose and cough came right back.  This time though, we're going to try to ride it out without any drugs.  He went to school yesterday and had a great day.  His teacher even commented on how great his energy level was and I had high hopes we would be there today for the Valentine's Day celebration; even the parent's were invited.  He missed it last year, shocker, because he was sick, so I really hoped he'd make it this year.  But wouldn't you know it, he woke up at 5AM shivering and with a 103 degree fever.  So no party for Stephen or for Mommy.  Boo-hoo!

Thankfully though on Monday, we'll be up in Philadelphia at CHOP for his monthly transplant clinic, so they'll check all of his lab work and make sure everything is A-OK in terms of kidney function and suppression (he started back on CellCept at the beginning of the month after a long hiatus).  And I'm waiting to hear from his nephrologist if we can check his immunoglobulins (IgG) on Monday, at his pediatrician's request, to see if we can give him some stuff to help boost his immune system.  We had to do IVIG pre-transplant when Stephen was on dialysis to help boost his system, but that was an IV treatment and can have some bad side effects.  But I understand that it's now available in a sub-cutaneous (shot) form, that we can give at home.  I'm not looking forward to having to give the poor guy more shots, but if we can get him healthier so he can be at school and playing with his friends on a more regular basis, it would be worth it.  

In other news, we totally converted Stephen's nursery into a big boy room!  He loves his new big bed (we got him a double bed) and Mabel loves laying in bed with him.  In the afternoons when we climb into bed to read books, she right there at the foot of the bed, snoozing away.  It's so cute! And Bill and I had a great time on vacation.  The weather this year didn't quite cooperate (it was rainy, windy and chilly in Miami most days), but we heard some great music and ate a lot of amazing food!  And Stephen had a blast with his grandparent's! Actually, I'm pretty sure he had a better vacation than we did!! :)

These were the Valentine's we made this year for Stephen's preschool class.  Hope everyone is staying warm and has a nice Valentine's Day tomorrow!

Sunday, January 4, 2015

Happy 4th Birthday to my little Superhero!

Can you believe it's been 4 years since that crazy day when Stephen came into this world with one serious bang!?!?!? It's hard to believe it's been that long, yet I can't believe it's only been that long.  Weird, I know; but totally true!  I always say, "this little boy has been through more than what most people will go through in a lifetime," and he's come out of it strong, happy, and smarter than I could have ever imagined he'd be.  His memory is incredible, he's polite, and he catches me off guard saying the funniest things all the time!  Oh, and he gives some pretty awesome kisses too (he'll love that when he's 13)! Yet, he's cautious, anxious, and nervous at times, all of which I think can be attributed to all he's been through in such a short time and continues to go through and the fact he's been raised around mostly adults in a very adult world.  If you'd told me last year on this day that Stephen's anxiety would get better and he would eventually sit in the chair at the lab for blood work all by himself without any tears or having to be held down by three people, I would laughed in your face.  But, it's true!  He amazes me with his bravery all the time.  Going to school is still a challenge and the feeling of being left by Bill and I is still tough for him, but I'm hopeful that will be the mountain we conquer this year.  If we could conquer a 5 hour flight with no tears or tantrums, certainly we can conquer going to school (I hope)!

I wanted again this year on his birthday to show a picture from each of his birthdays to show how much he's changed and grown over the past 4 years.  I will say, when I go back to his first day of life and the subsequent couple of days, the emotions are almost as raw as they were 4 years ago.  It was one hell of a day with twists and turns at every minute and moments filled with utter sadness, while also experiencing such joy.  Kind of like how our lives would go the next 4 years! As I lovingly told Stephen this morning, "you were trouble from the start, kiddo!"

This year we've had a low key birthday celebration.  No party planned, just hanging out and doing something that Stephen would find fun.  So...we got up this morning, opened a few birthday presents and met Nannnie and Poppa for breakfast to have waffles.  And since Stephen has never been on the metro before and loves trains, we took a metro ride; or as he calls it, Emery (Emery is the subway train from Disney's train cartoon show, Chuggington).  We took Emery into Arlington, bought a couple of treats at a deli/cafe, and hopped back on the metro back to Vienna.  It was a short ride, but he LOVED everything about it! I foresee a lot of metro rides in our future!!

Thank you for continuing to share a part in Stephen's journey.  I know part of the reason why Stephen's done so well over the past 4 years is all of the love and support he gets from everyone out there!!!  xo

This was the first time I saw Stephen after he was whisked away from the operating room.  He was about 4 hours old.  I had to beg and plead with the nurses to allow me to go to NICU to see him since I had had a c-section and was supposed to be in bed. 

This was Stephen's 1st  birthday party.  We threw a big party to celebrate his first year since we weren't able to have a baby shower or christening party and he had been hospitalized during almost every single holiday that year. It was fun to finally have a reason to celebrate!

Birthday #3 included a special visit from a our neighborhood fire station. 

Birthday streamers outside his door this morning!

There's Emery!!! She was waiting for us in the station :) 

Stephen rocks the perpetual bed-head like a champ!!   

Saturday, January 3, 2015

Happy Holidays!

Christmas was awesome and it felt SO GOOD to be home and in our own home this year.  And with Stephen being almost 4 this year, it was a lot more fun.  He understands the whole concept of Santa now so of course that it made it exponentially more fun.  Although it was nice that he's still young enough not to question the intricacies of Santa's magic, which I have a feeling won't be as easy next year and I'll have to be much more careful about where I put presents and things like that.

In between hospitalizations, we did have a chance to start a new family tradition; chopping down our own Christmas tree.  We drove out to a great tree farm in Middleburg, VA and stomped around the fields until we found the perfect tree for our little family.  It was actually a perfectly shaped tree; just up on a stilt (as we like to call it).  Plus, it made it nice and easy for Bill to saw the tree down! And we got a gingerbread train completed, albeit with a pretty messed up caboose, the tree and house decorated, and at the last minute, the cookies were made!  Bill also started a really cool tradition of leaving a note from Santa to Stephen net to his cookie plate.  It ended up getting soaked in coffee Christmas morning (shocker!), but I think those notes will mean a lot to Stephen one day.

And I think we got about 90% of the Christmas cards out this year, but in case I missed some friends, and for those of you who I don't know but follow Stephen's story, here's our 2014 Christmas card:

And here's our Christmas morning-in-pj's selfie :)

New Year's was also super low-key this year.  We decided to brave the cold and went out to Mexican at a (fairly) new town center area and Stephen had a great time running around a walk-through Christmas tree they had set-up.  It made for another fun Schwartz-selfie photo op!

But most importantly, Stephen is feeling a lot better!  We've done lab work twice since Christmas and his numbers are all pretty good and his appetite has pretty much made a full recovery and he's been sleeping great.  I'm a little nervous sending him back to school this next week with the flu running rampant, but we also all need to get back into a routine (desperately), so I think we'll just take things day-to-day and week-to-week.  He definitely needs to stay healthy the next 4-5 weeks, because Bill and I have a little vacation planned!!  Bill worked his butt off all year and made President's Club with his company, Wells Fargo, so we'll be heading to Miami for a few days to celebrate at his sales conference in February.  2014 had some super milestones and awesome moments, but also some really low lows, so we're looking forward to celebrating Bill's huge accomplishment and moving forward in 2015 and not looking back!

Although....we do have a big day coming up tomorrow....someone's BIRTHDAY!!!!!  Here's a hint....4 years ago this very minute, I was humongous, tired, and scared out of my mind.  You guessed it...Stephen's birthday!  Tomorrow our little miracle turns 4.  Unbelievable!!

Monday, December 22, 2014

Home for the Holidays

Six hours spent in the emergency department, lots of blood draws, flu test, strep test, respiratory panel, EKG, ultrasound and 24 hours later, we were home. Final diagnosis this time was adenovirus; a common community-acquired virus, but for Stephen has been tough to shake after having norovirus earlier this month. Hopefully lots of rest and taking it easy at home will keep us home for good! Much appreciation to the doctors and nurses at CHOP who got us in and out quickly so we could be home for Santa! 
Santa did make a special trip to the 5th floor of CHOP all the way from the North Pole while we were there, but someone was getting a much needed nap and missed him. 

Wednesday, December 17, 2014

Back to Philly

Well...bags are packed once again and we're heading to CHOP.  Stephen just can't kick whatever virus has taken hold and he's sick once again.  They'll be assessing him this afternoon in the Emergency Department and then probably admitting him to figure out what's causing all the discomfort in his belly and the fevers.  He hasn't really slept in 2-3 days and is beyond exhausted.  He finally fell asleep in our bed around 6 AM and has been out ever since.  Just waiting for him to stir a little bit and some laundry to dry and then we'll be hitting the road to beat the evening rush hour.

Just hoping and praying we'll make it home quickly and stay home!

Saturday, December 13, 2014

Crazy Thanksgiving

I just realized that for those of you who don't follow the Facebook page posts, you probably had no idea about all of the craziness the week after Thanksgiving.  I often times post on Facebook and Instagram first because it's so simple, and totally forgot to post here.  My apologies!!  So....Stephen ended up in the hospital at CHOP from Monday, 12/1 to Thursday, 12/4 with what amounted to program toxicity, norovirus, low sodium, and high potassium.  He's doing much better now that we're at home and was back to school this week, but we're still doing a lot of blood work here in Virginia and the doctors from CHOP are keeping close tabs on him since he's definitely not back to 100% yet.

The story is, about 4 weeks ago, Stephen picked up a stomach virus.  It started on a Thursday with a fever, vomitting and eventually diarrhea, but went away in about 48 hours.  He went back to school that next week (and gave me the stomach bug which resulted in an ER visit for IV fluids...thanks kiddo!!), but the day before Thanksgiving, started feeling sick again.  He had a low grade fever Wednesday evening and by Thanksgiving morning, he was sick as a dog; high fever, inconsolable, nausea, and diarrhea.  Of course, it was my first time at hosting Thanksgiving and had a house of family and friends (despite the craziness though we had such a lovely day)!  We decided not to take him to the ER because his fever would break with the tylenol and any time you walk into the ER with a kid like Stephen, it's an automatic admission and tons of tests.  Friday morning we took him to the pediatrician who again said it was just a stomach virus and sent us home.  Thankfully, we had an already scheduled routine transplant clinic visit at CHOP on Monday, so we held out through the weekend and Stephen thankfully improved.

Bill ended up sick Saturday night/Sunday morning, so I took Stephen up to Philadelphia Sunday  night and we had a "sleepover" at the Gift of Life House.  Even though his symptoms had improved, he still had some diarrhea, a cough, and was constantly complaining his tummy hurt.  Poor kiddo was definitely still fighting something.  Monday morning we reported to CHOP, had his blood work done and waited to see Dr. B.  I knew in my heart they were going to admit him, so I had packed enough clothes and stuff for a week, just in case.  And as suspected, his numbers were ALL OVER THE PLACE!!!

His creatinine is usually between 0.4 and 0.6; it was 1.3.  His prograf is usually around 5.2; it was over 12.  Really really bad.  So...they admitted him, Bill packed a bag and his parents took him to the train station and by 6pm, Bill was in Philly too.  The docs started Stephen on IV fluids and put him back on his high calorie formula and stopped his progaf and ran a battery of tests.  It turned out that he came back positive for norovirus; which is that nasty stomach virus.  So that meant we were on isolation and Stephen couldn't leave the room.  Trying to explain to a three year old why you can't go to the play room is excruciating!

Basically his body wasn't absorbing his immunosuppressant drugs correctly because he didn't have the proper nutrients he needed and so he was absorbing WAY TOO MUCH of his prograf.  That caused his creatinine to sky rocket and his kidney function to plummet.  I was keeping him really well hydrated with lots of water and pedialyte in his g-tube, but he needed the high calorie formula for not only the calories (he wasn't eating much) but the balanced nutrients (sodium and potassium).

Thankfully his creatinine bounced back fairly quickly, and his prograf has just come back to normal as of Thursday of this past week, but his potassium is still high, so that means he's no allowed to eat any potatoes....his favorite food.  Thankfully the excuse, "Dr. B said you're not allowed to eat french fries," has worked pretty good so far and we haven't had any big meltdowns yet.  And his appetite seems to be getting better.  But he still complains a lot that his tummy hurts and he's definitely a lot more tired that what he was before.  And he had a rough couple of days at school.  His teacher said he cried a lot and was pretty much staring at the door all day long, which of course breaks my heart.  I'm hoping as we get closer to Christmas, we'll have our happy-go-lucky Stephen back.

So, that's been the past couple of weeks!  And unfortunately, we're not the only ones who have been hit hard by illness.  Our good kidney friend, Parker from New Orleans, is battling some viruses now too in the hospital and plenty of other kiddos have been hit hard this winter so far.  We're keeping our fingers crossed this will be it for us this winter!!!  I will say though that Stephen was a total champ during this admission and only freaked out one time when they initially put in his IV.  Other than that, he did so awesome with all of the 5AM blood draws (they stick them every morning), pokes, prods, and slept really great in his "robot bed."  And for the first time, didn't freak out with the ultrasound!  He just simply asked the radiology tech, "Can I have the cold jelly?  I just don't like it hot."  He's my hero!!!

Monday, November 10, 2014

Disneyland and SoCal

So the last I left off, we had just had our first day in Disneyland/California Great Adventure.  The next day, Thursday, we tackled Disneyland, which for those of you who might be more familiar with Disneyworld, is the equivalent of Magic Kingdom.  We rode rides in Tomorrowland, Storybook Land, Fantasy Land, ToonTown, and Autopia, but still no "visits" with Mickey Mouse or his friends.  Stephen waved from afar, but no interest in actually walking up to them.  I thought maybe for a second, we might snap a picture with Pluto,  but instead, he wanted to ride the double-decker bus up and down Main Street.  The one thing he did LOVE was the "Stephen-sized" roller coaster in ToonTown.   I'm so happy that he likes the rides, because Bill and I both love roller coasters and rides and as soon as he gets a bit taller, we can ride even more rides! Oh and he LOVED the tea cups as well.

He also has a new found appreciation for churros and we found that even though the Mr. Toad's Wild Ride is in Fantasty Land with all of the "kiddy" rides, it's definitely not meant for little kids.  All three of us found it a bit disturbing.  I'd stay clear of that one!

After nap on the second day, we decided to head back to Cars Land to get one last chance to see Lightning McQueen and ride Tow Mater's Tractors.  Once again, Cars Land definitely did not disappoint.  I might even go as far to say that it's even cooler at night with all of the neon lights and signs lighting up Radiator Springs.  We cruised "low and slow" down Route 66 and got to see both Lightning McQueen and Tow Mater again and rode the tractors a couple more times.  The tractors, by far, were Stephen's favorite ride!  And we sat and watched the race cars zoom by us as they made their way through Cadillac Range.  Unfortunately, Stephen was just a few inches too short to ride the actual ride, which apparently is actually really cool and fast.

The next day, Friday, we had no plans except to attend Mickey's Halloween Party that night in Disneyland, so we decided to make a it a pool day and rented a cabana at the Disneyland Hotel where they have all sorts of cool water slides and pools.  Unfortunately, it turned out to be a dreary, cold day.  Booo! Stephen loved the pool though and we let him play for awhile until he got so cold his lips turned blue.  And with the help of some Mickey Mouse Clubhouse on the TV in the cabana, we were able to lounge a little, get some lunch, and relax until heading back to the room for a nap.

Later that night Bill and I put on our Make-A-Wish pit crew shirts and Stephen (begrudgingly) put on his race car driver costume and we made our way back to Disneyland for the Halloween party.  It ended up being a bit of a mad house with people entering the park for the Halloween party and people trying to get out of the park that didn't have tickets to the Halloween party, so we just decided to make the best of it and meandered through the crowds to some rides.  Stephen wasn't really into the whole trick-or-treating thing, so we were able to hop on some of the rides pretty easily.  In doing so, we somehow ended up getting ushered into the Avenger's "exhibit" and Stephen got a meet-and-greet with Captain America.  Even though he has no idea who Captain America is, he had fun meeting him and when asked by Captain America who his favorite Avenger is....he promptly said, "Lighting McQueen!"  It was hilarious and Captain American handled it like a champ!  The cool part about it though is that Stephen and Captain America were dressed in the exact same colors, which made for some really cute photos!

From there, we went back and drove the race cars again, searched for Nemo and Dorry in a submarine, and spun like crazy on the tea cups again.  We ended up missing the Halloween parade, but caught some of the fireworks as we were leaving the park. All-in-all it was a fun night and cool to see how dedicated some people are to their Halloween costumes!

The next two days we spent in gorgeous Laguna Beach (we went on Saturday and loved it so much, we drove back on Sunday). I think I'll let the pictures speak for themselves.  It was beautiful and sunny and all three of us loved exploring the beach, caves, and tidal pools and we had an awesome lunch the one day with Bill's Aunt and Uncle who came up from San Diego to meet us.  And Stephen had a ball playing with other kids on the playground....right on the beach.  It was heaven to us and we almost didn't come back :)

But alas, it's back to reality!  We were up at CHOP on Friday for Stephen's monthly transplant clinic visit and then Stephen and I had a quick trip to York for the weekend to see friends and family.  And in case you're wondering, the visit to CHOP went awesome!  Stephen's blood work was near perfect and he grew a whole 0.5 inches since the last time!!!!

If I had to sum up the trip in one word:  AMAZING

Make-A-Wish gave us the opportunity to do something that we never would have done and without them, we never would have packed up and headed across the county to Disneyland.  But Stephen was an awesome traveler and it was more than worth the 5 hour plane ride to see the excitement on his face when he met Lightning McQueen and Tow Mater and got to "actually ride on Town Mater's tractors."  It just feels so good to know that the three of us can tackle such a big trip and have the ability to pack-up and go and do whatever we want and not have to be slaves to doctor appointments, and lab draws, and tubes, and machines.  Yes, he still has a giant ziploc bag full of medications to haul around, and he still takes his feeding pump with him for fluids; but honestly, that's nothing!  And when I accidentally yanked his tube out in the bathroom at A Bug's Life (oops!), he just help a paper towel to his tummy, and patiently waited while I searched through my bag for a syringe to pop it back in.  Then he took off and ran back in line for the bumper cars!