5 Year Kidney Anniversary

Today marks 5 years since Stephen received the gift of life from Kristin Freeman.  It feels like a lifetime ago at this point.  The story has faded a bit and has been condensed down into a few short sentences.  The anxiety and trauma of my pregnancy and Stephen's early years has subsided.  The day-to-day worries about health issues and medications and how to's have been replaced with normal 1st grade kid and everyday problems.

I had someone ask me yesterday "is 5 years a big deal for a kidney transplant?"  My first instinct was like, "yeah 5 years is huge!"  But what she meant was, "does 5 years mean he's cured?  Like if you beat cancer and you make it to 5 years in remission, you can be considered cancer free?"

My response was, "No. It's not like cancer.  He's not cured, transplant is just a treatment.  At some point, probably by the time he's in high school, he will need another new kidney."

But really the answer is every single day is a big deal.

Every day Stephen isn't in the hospital is a win.

Every day that I have to drag him out of the bed in the morning for school is a win.

Every time he puts on his baseball uniform and runs out onto the field is a win.

Hearing him read a book is a win.

Watching him making friends is a win.

Seeing him participate in his classroom or in school activities just like every other kid is a win.

Watching him eat, even if it's complete junk food, is a win.

I could go on and on and on.  Nothing is taken for granted.  Every single moment with Stephen is a true gift.  Sometimes I get so overwhelmed by the thought that it could be taken away at any moment.  Nothing is guaranteed.  Life isn't guaranteed.  So we're living life by our own rules and soaking up every moment and riding it for all it's worth!

Appreciative. Grateful. Happy. Thankful.  All words that describe how we feel towards Kristin for what she's done for all of us.  We feel that way all the time, but today, we get to really celebrate her and her amazing gift and shout it out to anyone who will listen about what an incredible thing she did to give our son a happy, normal, healthy life.  And work hard to try to pay it forward for others.

We love you, Kristin!!

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In case you were wondering what we're doing today to celebrate.....

We gave Stephen the option to choose whatever he wanted to do today on his special day to celebrate.  I thought for sure it would be Legoland or something crazy like that.  Nope.  He picked Dave & Buster's.  We've never been and he wants to just play arcade games and race cars.  So we're going to pick him up around lunch time from school and head to Dave & Buster's for the afternoon.  And he's rockin' his new shirt that Daddy got him for his special day :-)

Happy 6th Birthday!

Dear Stephen,

Happy Birthday, my love!!  I cannot believe you're 6 today!  It seems like we were just celebrating your 5th birthday a few months ago.  Pretty soon, you're going to be 10 and then 12, and poof you'll be 18!  Ugh.  Don't grow up!!!

Every year I post a message on the blog on your birthday.  It's usually about what a miracle you are and about the day you were born and everything you've been through over the past years.  But this year, I don't want to dwell on all that stuff.  There will come a day, when all those pictures we look at from when you were a baby, will all make sense and it will start to mean more to you than "you were a very sick baby." But right now, on your 6th birthday, there's no need!  Today is the day to talk about what a cool kid you are and how smart you are and how much your Dad and I love you.

I could have never imagined in my wildest dreams that being your Mom would be so much fun and so cool!  Sure, there are moments that stink.  Like when you don't listen and you're really, really, really stubborn or you fight me to do something so simple like putting a band-aid on a cut (I mean, really...a band-aid?!?!?! You can handle so much worse!).  But, more often than not, we get to have fun together!  We get to go do cool things like take road trips or go on vacations; or go explore new parks; or go to airplane and car shows.  You're always up for an adventure with me and we spend a lot of time together.  Just you and me.  I love how you keep me company during our days at home all throughout the house running your cars here, there and everywhere.  And you're always such an awesome travel buddy.  Never complaining about waiting in lines, or during long car rides.  It's usually me who is the impatient one!

Seeing you flourish at school makes me the proudest Mom on the planet.  When I came to help out in your class for the first time at Christmas, my cheeks hurt when I left.  I could not stop smiling watching you interact with your classmates and how well you listened to your teachers and how independent you can be.  Every time I've picked you up at school or talked with the school nurse or office ladies, they always tell me how much of a joy you are to have at Hutchinson.  How polite and cute and sweet and loving you are.  You give everyone you meet a hug or high-five or fist bump, and I love that!  You couldn't make me more proud!

And you surprise me all the time!  With your smarts or your wit or your comedic timing or just the way you jump head first into something which I think you'll struggle with.  You definitely keep me on my toes, kiddo!!

I know every Mom is proud of their child, but know when I tell you Stephen, that you truly are something special.  You've defied all odds and God has certainly put you here for a reason.  I can't wait to see how you'll grow and flourish and mature over this next year, and I know you'll keep your Dad and I on our toes the whole time!

Love you times a hundred million trillion!!!!
Mommy

First Day of Kindergarten

And just like that....my little boy is off to Kindergarten!

I've ridden a school bus a million times, just like we all have, so I don't know why I'm in such shock, but it all happened so fast!  The bus pulled up; the doors opened; the kids walked up; climbed the stairs; the doors shut; and off the bus went.  And Bill and I were just standing there on the sidewalk in total shock not sure what to think or say.  And for me; feel.  We were left totally speechless!

I had prepared myself in my head a hundred different ways on how we were going to handle the anxiety, fear, and tears that might come with the first day and getting on the bus.  We even talked about how we would walk back home calmly, get in the car with calm voices, and drive him to school if he panicked and try not to make a big deal out of not getting on the bus.  But clearly, that didn't happen!  It was more like, "see ya' Mom! I'm off to kindergarten, duh!"  And we were left totally shocked and dumbfounded!  wow.  I'm not even sure how he knew where to go or sit or what to do.  But obviously, he figured it out, because he's now been at school for an hour!

And holy moly, in the midst of writing this, I just got a call from his teacher!  I just about lost my breakfast when I heard her voice on the phone figuring something was wrong.  She was just calling to make sure he wasn't supposed to have his lunch box, and that he's buying lunch today.  He probably say all of the other kids with lunch boxes and got worried he didn't have one.  He wanted to buy lunch today and go through the lunch line with the big kids, and since it's chicken nuggets, he was doubly excited!  I guess he just forgot :)  His teacher promised him she would call me during P.E. to double check he was buying lunch and she reported that he's having a great morning!! 3 PM can't come soon enough so I can hear all about his first day!!!!

End-of-Summer Update

Since we're coming up on a HUGE milestone (a week from this coming Monday...eek!), I thought I better a Summer recap posted on this blog so that I can post a First Day of Kindergarten picture on the 29th!!  We've had a lot of big milestones come and go over the past 5 years, but this one is a big one!  Stephen is so exited to be starting "big kid" elementary school and can't wait to ride the cheese wagon.  Me, on the other hand, I'm nervous as hell!  I know he's going to do great in school, and I know his teacher is going to be great, and they're going to take really great care of him; BUT....I'm so nervous about him being nervous and scared when the bus pulls up and it's time for him to actually get on it and go.  He's had more than his fair share of freak outs at daycare drop off, so I'm on pins and needles as to how this is going to go.  But we shall see...

Summer has been really great.  Stephen's been at daycare/camp off and on through-ought the Summer.  He's had some weeks off to just chill at home with me, spent a week with Mimi & Poppy, spent a week in NC with Nannie & Poppa, and spent the rest of the time with his buddies at "camp."  And just because, he's gotten to stay home a day here and there.  We've spent a little time at the beach (not nearly enough for Mom), a lot of time at the pool, and did some fun things like the Philadelphia Zoo, a Flying Circus Air Show, explored some new parks, saw Thomas & Percy (at the Strasburg railroad) and went to a polo match with his cousins.  All the while our house was under construction.  We undertook a major kitchen renovation and replaced all of the flooring on our first floor and updated our powder room.  It was a much needed facelift to our house and we finally took the leap after agonizing over the decision for 3 years!

Here's a little photo recap of our Summer highlights:

Annual trip to Sanibel, Florida in May to visit Mimi & Poppy

A rainy May meant a lot of trips to the Air & Space Museum!

Happy Father's Day!

We were at home this year for 4th of July, so Stephen got to decorate his motorcycle and ride in our neighborhood 4th of July parade

Someone was in heaven!!!

Stephen still doesn't like the "big" fireworks, but this year he was really into the sparklers and bottle rockets.

A two day trip to CHOP, meant a fun afternoon at the Philadelphia Zoo with Mom, Mimi & Poppy

First pony ride!

We got to spend some time while down in NC with the Freeman's.  Stephen loved playing with the girls and had so much fun!!

Ferry ride to the Fort Fisher Aquarium 

Stephen and I took a Sunday afternoon trip to see the Flying Circus Airshow in Bealton, Virginia.  It was a super hot day, but so much fun!  We can't wait to go back again!

A cool new park we found to enjoy on a hot Summer day

And a friend at the park! :)

Twilight Polo with Norah and Chloe out in VA horse country

Stephen got to climb up in a combine at another local park/farm; he was in heaven!

Not so excited about picking sunflowers with Mom.

But a big helper, none-the-less :-)

We did a lot of fun stuff this Summer, but we did have to deal with some bad stuff in between and that included a 48 hour hospital stay at CHOP in June right in the midst of the construction going on in our house.  Right around mid-June, right before the end of school, Stephen got a urinary tract infection.  He came home from school one day and felt warm and then started having some accidents.  Thankfully, we already had his 5 year checkup scheduled with the pediatrician for the next day, so the timing was pretty good because we could get in to see his main pediatrician (who knows him really well and is awesome with complex kiddos).  As I suspected, he had a UTI; his first, shockingly.  We had to wait a day or two until the culture came back and they could start him on an antibiotic.  By this point, he was having really high fevers and a lot of abdominal pain which really worried me.  Once the final culture came back, they switched up the antibiotic and we got sent for a round of bloodwork by his doctors at CHOP.  

Of course, the blood work didn't come back good.  His creatinine was up and everything was off just a bit.  They wanted to admit him right away, but he was feeling better, so I got them to allow us to push fluids really hard for a night and then re-check labs.  Re-checking the labs on Sunday morning turned out to be a feat in itself (actually a down right disaster) and didn't end up giving us any better results; so off to CHOP we went for admission.  Stephen was admitted Sunday afternoon for IV fluids and antibiotics, and to get his immunosuppressant drugs back to baseline.  And of course in the meantime, he missed his Pre-K graduation at school.  Seems to always be the way!

In the meantime, his gtube decided to freak out and his stoma site (the hole and around around where the gtube goes) was deteriorating.  So during the admission, the gtube nurse came and tried to work on getting his stoma site healed.  Of course that meant coming home with a foley-like tube sticking out of his stomach and a whole mess of stuff to deal with.  

Thankfully, he was feeling better in a few days, his stoma site started looking better within a week, and I put his gtube button back in.  He couldn't go swimming with it at the pool easily or go to camp with this tube hanging down, so it had to go! Since he was feeling better, off we went to Mimi & Poppy's house as planned.  But of course, while he was there, the UTI came back and they had to take him to urgent care for a urine culture.  It was a crazy couple of weeks to say the least!

Because of all of this, his doctors wanted him to have an ultrasound of his bladder to make sure he wasn't refluxing urine into his kidney, which also added an appointment with urology and we had to have a follow-up with surgical regarding the whole gtube issue.  This all lead to a marathon two days of appointments (6 to be exact) at CHOP in July.  But all of the test results came back good and surgical was pleased with how the gtube was healing.  So as soon as we got back from Philadelphia, we took off for Nannie & Poppa's in NC.

Unfortunately, a few weeks ago, the gtube stoma site started deteriorating again and it was a HOT MESS for about 2 weeks.  We were panicking that it would need to be re-sited, and Stephen's just not ready yet to completely get rid of it.  He still can't drink all of his fluid requirement (1,300 ml per day) and isn't able to swallow all 8 of his medications yet.  We're working on it, but he's not there yet.  But everything we were putting into the gtube was just leaking right out.  It was such a disaster!  And maddening and frustrating, because no one had any solid solutions.  Eventually I had enough; changed the button size, and things have dramatically improved.  We've moved to only using the tube now for medications twice a day and an overnight tube feed of water only when needed and Stephen has stopped taking his feeding pump to daycare/camp with him, and next year he won't be taking it either.

We met with his new school a few weeks ago and finalized his Individual Health Care Plan (IHCP), and I'm feeling really good about how they're going to handle things with his health and if his needs ever increase, they're ready, willing and able to handle it.  Even the Vice Principal was accommodating in talking about his anxiety and troubles with acclimating to new environments.  So I'm really hopeful about next year.   

But most importantly, Stephen is really healthy right now!  Aside from those two UTIs and the gtube issues, he's remained healthy this Summer.  His nephrologists at CHOP are keeping a close eye on some donor-specific antibodies (they've increased one of his immunosuppressant drugs to compensate) that creeped up a little, but it's nothing of concern.  And we'll just keeping chugging along with lab work every 6 weeks and visits to CHOP every 3 months as long as things remain status quo.  

Stayed tuned for first day of school pictures on the 29th!!  Say a little prayer that Superman gets on the bus and stays on the bus! :-)

World Kidney Day Advocacy

I know, it's been WAY TOO LONG since I last posted an update about Stephen.  I apologize to anyone who has been checking the blog periodically waiting for an update.  I had a few friends gently nudge me to get back to blogging about Stephen's journey, because I wasn't really sure anyone was still interested or cared since most of the time, everything is just status quo.  But I finally realized that even if no one is reading this, this blog has meaning to me and hopefully one day to Stephen as well.  After realizing I really did need to "get back on the horse,"  I wrote a really long update that included everything we've been up to since Halloween (the last time I posted anything) and a whole diatribe about what this blog has meant to me and what I hope it will mean to Stephen when he's older.  I wrote it while I was on an airplane on the way to Puerto Rico in February with Bill for his annual sales/work trip.  I had meant to publish it when we landed, but when we got there, our internet was super spotty and it took us a while to get it all worked out and by the time I remembered I had wrote this long blog update, I lost it.  The whole thing got deleted because it didn't automatically save without a connection to the internet.  A total bummer!  And....I just haven't gotten off my butt or gotten it together to re-write it.  So, that's where we are today.  Although, as you can see, I did slightly update the blog to make it a little easier to read and navigate.  

There is something though I really wanted to share with everyone; Stephen and I participated in a really cool event a couple of weeks ago on World Kidney Day.  I was extremely blessed to have been asked by the American Society of Pediatric Nephrology (ASPN) to speak during a Congressional briefing on pediatric kidney disease.  The World Kidney Day event theme was, "Kidney Disease in Children: Act Early to Prevent It!" and took place in the Capitol Hill Visitor's Center.  Stephen, Bill, and Bill's Mom Tish, came along with me, and I spoke with other pediatric nephrologists and a pediatric nephrology researcher about a number of specific issues surrounding pediatric nephrology. how Medicate and legislature can affect pediatric patients, and more specifically for me, what it's like to have a child with kidney disease.  

I have done some advocacy efforts in the past on Capitol Hill, but typically have less than 5 minutes to try to get my story and point across to Hill staffers.  However; in this setting, I was able to spend almost 15 minutes sharing our story.  It was a wonderful opportunity and one that I'm grateful to have had.  And best of all, Stephen was there and when I asked him to join me at the podium at the end of my speech, he told everyone in the crowd that the best part of getting a new kidney is growing big and strong!  He totally stole the show as you can imagine!  And was totally unprompted to respond with such an awesome answer!

Here's a link to a recording of my part of the briefing.  I'd love it if you could take the time to watch and listen to my speech (it's about 13 minutes in length) to help keep the conversation going about these issues.

https://youtu.be/SwXQO6ZhVuI

Halloween 2015

Wow, I've been incredibly delinquent on updating Stephen's journey!!!  I had a few posts I started over the Summer and when school started back up again in September and can't believe I never finished or published them.  The last published post was back in March?!?! Shame on me! 

Well, I guess I need to put an end to this no-bloggin streak then and post an update on our Superman! I'm thrilled to report that he's doing so awesome!!!  He started Pre-K in September at the same school he's been going to since January 2014, Primrose School of South Riding, and he's having a blast in Pre-K!  He now goes every single day, and I'm happy to report that since the first day in September, I think we've only had tears twice!  It's a miracle!!  He has some of his old friends from previous years in his class and he's made some new friends too.  And this year they get to wear what Stephen calls, "his big boy uniform."  It's made getting ready for school a breeze and on top of that, the kids look adorable!

He's had one illness so far this year, a respiratory bug (similar to pneumonia), in September that kept him home a few days and that had him doing nebulizer treatments at home and at school, but other than that, he's been healthy!!  KNOCK ON WOOD!!!  We've been doing blood work here in Virginia in between every-other-month visits to CHOP and all his numbers are great!  And I got an update from Kristin, Stephen's kidney donor, a few weeks ago, that she had her 2 year post-transplant check-up and she also got a clean bill of health!  Next transplant clinic visit to CHOP will be right before Thanksgiving.

You may remember, last year at Halloween, we were on Stephen's Make-A-Wish trip to Disneyland (out in California).  While we were there, we got to participate in Disney's Not-So-Scary Halloween Bash in the park.  Stephen dressed up as a race car driver, which was super fitting because we were in Disney to meet Lightning McQueen.  But unfortunately, Stephen wasn't really into the whole Halloween-thing and it was a massive fight to get him into his costume last year!  But thankfully, he finally agreed, because that night, he got to meet Captain America!  And it was really cool because they sort of matched, and aside from the Cars at Cars Land, Captain America was the only "mascot/character" he met (he's scared of anything that resembles a mascot).  

So this year, when the time came to picking out a costume, he bounced around between a police man, a soldier, and another race car driver,  but finally decided on Captain America!!  I wasn't sure if he'd get too excited for Halloween this year since he was so indifferent in the past, but when the box arrived with his costume, he went nuts and immediately had to put it on!  And then Captain America hung in the closet for a few weeks until last week when he got to wear it for his school's Halloween costume parade and then for trick-or-treating on Saturday. And boy, did he ever do trick-or-treating!  This kid went nuts and probably ran to no less than 50 houses!! Wearing his mask, shield, and carrying an overflowing bucket of candy the whole time!  It was so much fun watching him and his neighborhood buddies run from house to house having a great time!

And unlike last year too, he went to town on his candy!! Stephen and Daddy had a good time sifting through all of his candy and picking out their favorites.  He's made a lot of progress on his eating over the past couple of months, and we've finally got a pretty good eater (albeit a bit picky) now.  Which makes like a whole lot easier for us when we're out and about!

So all-in-all, this little dude is kicking butt!  We have absolutely nothing to complain about and are now gearing up for Thanksgiving and Christmas!! I think Christmas this year will be the best one yet with Stephen and I hope finally we'll get that ever so elusive photo on Santa's lap :-)  We've certainly been working on our Christmas list for Santa!!

Here are some photos from the first day of school, his school picture, and Halloween.  And a fun comparison from last year to this year.

  

Fun Update!

I'm so happy to report that Stephen is doing amazing and things couldn't be any better for our little Superman right now!!!  Okay, now I'm off to go knock on every single wooden surface in our house because I probably just totally jinxed ourselves.  Ha ha!

Aside from a little cold/cough and allergy thing we all three had a few weeks ago, everything's been so great this past month.  Stephen had a whole round blood work drawn last week here in Virginia, which included all the regular cast of characters plus they checked his cholesterol, vitamin D, and parathyroid hormone (PTH), and everything was great!  The only slight change we had to make was increasing his prograf dose a little.  Now that he's back on his CellCept, I've been waiting for his white blood counts to drop and screw everything up, but his cell counts and hemoglobin were actually better this month than they have been in a very long time.  So we've been able to get away with skipping our March visit to CHOP and will head to Philadelphia at the end of next month for a visit.

Other than that, we've really been enjoying all sorts of fun activities around the DC area; despite the weird Spring weather we've had.  

And most importantly, I can't forget to tell everyone this because it's so HUGE.....Stephen has been doing to daycare for two weeks now without any tears!!!!!!!!!  It's a freakin' miracle!!!  The one thing I've been dying for has finally happened!!!  And I seriously can't even being to describe how it's changes our lives.  The mornings were awful getting ready for work and school and the evenings before school days were also a drag.  And even though I knew he stopped crying after a few minutes once I left, and he liked going to daycare, there was always this doubt in the back of my mind about whether or not I was doing the right thing and whether or not he was having a good time and yada yada yada.  But now it's so awesome!!!  We've come up with a routine each morning when we walk into class, I get a couple of BIG hugs and kisses, and I walk him over to the board where he gets his name each morning and finds out what activity he starts with for the day.  Then a couple more hugs, a good bye and I'm out.  And my whole morning just feels better, regardless of what else is going on.

In full disclose, it took a little bribery with some Matchbox cars, which I tried so many times(!), but this time it actually worked!  We did a couple days of Matchbox cars, and now we've graduated to a sticker chart, so it's 3.5 weeks of no tears before a reward.  And so far, so good! 

He's also added some new foods recently to the regular line-up including jello and ice cream, which are certainly new textures, and he's given yogurt a try and we had pizza for lunch the other day in Old Town, Alexandria, which is also new.  All-in-all, I couldn't be more proud of him!!

And of course, we have to share some pictures of our recent adventures!  We played in the last big snow storm of the year and then promptly enjoyed the sunshine a few days later; took a trip to Frederick, MD to a train museum; been to a local Touch-A-Truck; Stephen and Daddy took a trip on the Metro to the White House; Stephen had a Spring hat parade at school; we did a celebratory breakfast complete with Nutella and waffles after labs last week.  And we're gearing up for the Easter bunny this week!  Happy Spring to everyone!!

Hopefully I've finally figured out how to upload videos (I've only been trying to do this for 3 years).  Here's Stephen's preschool class singing "You Are My Sunshine" at their Spring hat parade last week.  Enjoy!!