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!

Wednesday, October 29, 2014

Cars Land with Make-A-Wish

Since both of my "boys" are currently snoozing, I thought I would take the opportunity to post a quick update about Stephen's Make-A-Wish (MAW) trip. And more importantly, post picutres from our first day at Disneyland!

Yesterday morning at the crack of dawn, we flew from Reagan to LA. We had everyone's worst travel nightmare happen...our alarm clocks never went off! We literally woke up at 5:55 am, with the limo waiting outside. Thankfully, we were able to get out the door in under 20 min, and made our flight! And the five hour flight was great.  There were a few antsy moments, but overall, Stephen did great on the flight and we successfully made our way from LA to Disney without any issues. 

This morning was our big meet and greet at Cars Land with Lightning McQueen. We made our way over to Cars Land at 7am and met up with a Disney cast member who escorted us into Cars Land. The place was already hoppin'! We were so amazed at how much it looks just like the movie. If you're a fan of the movie in the least bit, you would get a huge kick out of Cars Land. It's actually really cool!!

We rode Tow Mater's tractor ride first while we waited for Lightning McQueen to make his way into Radiator Springs, which was also super fun and Stephen loved it! But as soon as we got off the ride, we spotted Lighting AND Tow Mater waiting for Stephen. It was awesome! They blocked off the area so Stephen got his own special time with both characters, which was really awesome. He gave them both hugs and wanted to know where Sally and the rest of the gang were (Sally is Lightning's girlfriend). They gave him a stuffed animal of each character, we took a whole bunch of pictures (Disney had a photographer follow us while we were in Cars Land so we got lots of pics!), and then said our goodbyes.

From there we took a stroll through Radiator Springs down Route 66 to see another favorite character; Red the fire truck. Stephen loves Red too and was really excited about seeing Red! After that, we meandered around Radiator Springs to see Stanley, the Cozy Cone, and Luigi's tire shop. We had a blast! Of course we couldn't leave Radiator Springs without some new cars and a big Mac to carry them all in :)

We did see more of Disney's California Great Adventure Park and rode a bunch of rides and waved at Mickey, Pluto and Goofy from afar (Stephen's still not to keen on "mascots"). Tomorrow, we tackle the Disneyland park and probably head back to Radiator Springs one more time. We are still on the look out for Sally!






















Monday, October 27, 2014

The BIG Surprise!

I think I mentioned a few months ago that there was a big surprise coming up for Mr. Stephen.  I didn't want to mention anything, because we pretty much kept the surprise from him all these months in anticipation of the "big reveal" that happened last Wednesday night.  Here's a little bit of the backstory:

I think it was actually at the end of the last year, we started chatting with Make-A-Wish about Stephen being referred for a wish.  For kids with diseases that require a transplant, the child has one year after the transplant surgery to be referred to Make-A-Wish and to start the process.  Once Stephen was referred to Make-A-Wish by his doctor's at CHOP, we received a phone call that he was eligible for a wish.  We talked a lot about whether or not to even proceed because Stephen's doing so well right now and we know at some point before he turns 18, he'll probably need another transplant and maybe he'd rather wait until he was old enough to completely understand what Make-A-Wish means. But after talking with Make-A-Wish and realizing we should just enjoy the opportunity now, we forged ahead.

Around Springtime, two really nice young women who are Make-A-Wish volunteers came to the house to meet Stephen, talk to us, and find out all about Stephen's favorite things.  In doing so, it became really evident to them that Stephen's favorite things are race cars and Lightning McQueen; so of course the first choice would be to meet Lightning McQueen!  And the best place to meet him and his best buddy, Tow Mater and the rest of the Cars crew, is at Disneyland in California where they have re-created the town of Radiator Springs (if you haven't seen the movie Cars, you must do so immediately!!  It's not only super cool, but funny too) with all of the characters.

A few months later we heard back from Make-A-Wish that Stephen's wish had been granted and we would be going to Disneyland over Halloween.  Even better yet!!  We also learned that they throw the child a wish reveal party at their favorite restaurant to "reveal" the big wish and it's also where you get all of your trip information and paperwork.  So last week we had the big reveal at Glory Days where he finally got the big news that we were flying to California to see Lightning McQueen at Disneyland!!!  Stephen had known we were getting ready to take a trip somewhere (because I had been talking to him about the big airplane ride), but he had no idea where we were actually going and I honestly think he was super surprised that we were really going to get to go to Radiator Springs!

One of Make-A-Wish's corporate sponsors is Custom Ink, and they ask you to make a t-shirt for everyone in your family to celebrate and commemorate the wish trip.  So we made Lightning McQueen themed shirts and wore them to the reveal party.  They say "Stephen's Pit Crew" with the lighting bolt and Lighting McQueen's race car number.  Stephen was super excited that all three of us had matching McQueen shirts too.  Here we are in our shirts getting ready for the celebration



And our amazing volunteers brought Stephen a couple of gifts to help keep him occupied on the plane.

Oh, and have I mentioned we're leaving TOMORROW?!?!?!  Bright and early at 5:30AM, the car will be here to pick us up and whisk us away to the airport and off we'll go to sunny California for 5 days!!  We'll be spending 2 days in the park, Halloween night at Disneyland for Mickey's Halloween Parade, and then we'll have 2 days to explore Southern California.  Our plan is to actually have no plan and just enjoy some time away and also see the beach at least once.  The most important part will be Wednesday morning when we are to report to Radiator Springs at 7:30AM for a special meet-and-greet with Lightning McQueen!!  Don't worry.....there will be plenty of pictures to share!!!  I'll be ready with the camera, and my tissues :)  

Thanks again to everyone for their love and support!!!  My goal is to definitely post some of the pictures while we're away, so check back this week for more Make-A-Wish pictures!!


Tuesday, September 23, 2014

Life is Good!

So the last time I posted, I talked a bit about Stephen's new foray into no g-tube feeds.  It's been a little over a month now and I'm more than happy to report that he's doing amazing without the high-calorie formula!  He's been eating like a champ!!!  So much so that some days that he actually exceeds his daily caloric goal!  It's so amazing.  To go from thinking he'd never eat, to now having to keep my fridge, freezer and pantry completely stocked at all times is so awesome!  Bill actually made a comment last night about it before dinner when Stephen was asking for a snack and I told him he needed to wait until after dinner before he could have a snack (his favorite....mini oreos).  I never thought those words would come out of my mouth!

I'm actually meeting with his teachers this afternoon at school to discuss how we can keep him more hydrated and fed at school so that he wouldn't need to come with his feeding pump each day.  He still has the same fluid goal of 1,345 ml of fluid a day, so I'm hoping to send him each day with an insulated thermos he can keep with him throughout the day.  If he's able to drink most of it during the day, he wouldn't need to get a g-tube feed during the day.  And I'm also hoping they might be able to give him some extra crunchy snacks with his lunch to help boost his calories.  The chef at his school feeds the kids really nutritious meals and it's not stuff Stephen's started eating yet (fruits, vegetables, yogurt, etc).  But I'm over the moon about his progress!  And...no more feeding therapy!  Woo hoo!!

And to top that off, his lab work was perfect last month at CHOP.  I thought for sure something would be off since he's not getting the completely balanced formula any longer, but it wasn't at all.  His numbers were perfect!  And he was so cute getting his blood drawn this past time.  He was sitting in my lap while the nurse drew his blood and handled it like such a champ.  Once she was done, he turned to me and said, "Mommy, I didn't cry!! I did it!"  It was so cute and just melted my heart.  Now if he could just accomplish that every morning we drop him off at school, we'd be set!

Speaking of school...I can't believe I haven't shared his first day of preschool pictures!  I totally missed the boat on that one.  Oops!  He's actually a lucky little dude because he has two of his favorite teachers from last year again this year; Mrs. Smith and Mrs. Thompson, and some of his best buddies are also in his class again.  So even though he still cries every morning at drop-off, he's loving school and learning so much.



And if you're not on social media, check out this link to a special feature The Waiting List did on Stephen and his first day at school #becauseofmyorgandonor:  


We also took a trip to the Sweigart's (my sister's family) beach house a few weeks ago and had a blast riding around Ocean City, MD in their pontoon boat with Stephen and his cousins and last weekend we went to a car and air show in Hagerstown, MD with Mimi and Poppy.  Oh and I can't forget the York Fair.  Stephen finally had his first taste of a big fair and had his first amusement ride.  He loved the whole scene and I think is now totally hooked on amusement rides!! And fair food is right up his alley!  Fried and salty :)