Monday, August 29, 2016

First Day of Kindergarten

And just like 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!!!!

Friday, August 19, 2016

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! :-)

Wednesday, April 13, 2016

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.