Tuesday, July 8, 2014

May/June/July Update

We've been flying through Summer enjoying the sun, sand, and fun summer activities and I haven't been very good about sharing all of the great strides Stephen's been making.  Since the last time, we've been down to Florida and back; down to Wilmington, NC, to see the Freeman's (Stephen's kidney donor) and celebrate Memorial Day weekend in Southport, NC; had two visits up to CHOP; Stephen spent a weekend at Mimi and Poppi's and went to see Thomas the Tank Engine at Strasburg; and then most recently we made the long haul from Philadelphia back down to Southport, NC, to Nannie and Poppa's for the 4th of July.  And then in between we've been hanging out at the pool every chance we can get, working on some updates to our home (we re-landscaped the backyard), going to swim lessons, and Stephen started a new round of feeding therapy once a week.  And he's still going to school/daycare two days a week where they have soccer camp every Tuesday.  It's been a whirlwind Summer so far, but I can definitely say, it's been the "most normal" and probably the most fun we've had in many years. Certainly since Stephen came along in 2011.

Stephen is growing by leaps and bounds and is becoming such a fun little boy.  He absolutely LOVES the pool and is doing so great in his swim lessons.  It's amazing to watch him in swim lessons jump right in under the water and follow right along with the instructor.  And he literally makes friends everywhere we go.  It doesn't matter where we are, he finds a kid, a teenager, or some adult to talk to and tells the funniest stories.  I know I'm a little biased, but it's impossible not to smile when talking to him.  He just lights up a room! And the little bugger is just so smart.  He'll memorize a new library book in 2-3 days and he's got the Pledge of Allegiance and "God Bless America" down pat (his Daddy is way proud of that)!

And the new round of feeding therapy is going great.  He's added a few new foods over the past few weeks:  grilled cheese, jelly, chocolate hazelnut spread, rice krispy treats, and a few bites of apple.  And because of this, we've been able to ween him a little bit off his high calorie formula.  The only downside has been the addition of extra water/fluid he gets in his tube because he's grown so much, but with time, I think he'll be able to reach his goals.

Another big milestone has been potty training and sleeping in a big boy bed.  We had been struggling with potty training over the past couple of months, but I finally just made the move and put him in undies one day and we haven't looked back since.  Now we're at the point, that he will definitely be able to make the transition with his friends to preschool in September, which I'm incredibly happy about.   And with all the traveling we've been doing, Stephen's gotten pretty used to sleeping in a regular bed instead of his crib.  We never made the move to a bed because he still is connected to his feeding pump at night and I was concerned he would crawl out during the night and pull out his tube, but he hasn't done so yet.  He fell out one time at Nannie's house this past weekend, but that's been it, so I think it's time to officially convert the crib to a bed!  I keep saying it feels like he's "3 going on 10" in the blink of an eye.

But most importantly, his health is fantastic!  Every time we go to CHOP, we seem to be able to lose another medication and he's now down to only 5 medications and he doesn't take all 5 every day.  And he may just stay off the CellCept indefinitely.  CellCept is one of the big anti-rejection medications and it has a lot of nasty side effects (some of them are too scary to even mention) and has wreaked havoc on Stephen's cell counts in the past.  I've been hoping that they just leave him off of it since he's doing so good right now and his doctor seemed to agree with that sentiment last week since all of his labs were great.  We saw both the nephrologist and the liver doctor last week at the combined kidney/liver clinic and got confirmation that his liver and spleen are still holding steady.  No changes really at all since we saw her last before transplant.  His spleen and liver are still both enlarged and pretty "rigid," but they're both functioning well considering Stephen has ARPKD and CHF and we'll just keep our fingers crossed that his function remains the same and he won't ever need a liver transplant.  The doctor says she sees patients like Stephen that will make it through to adulthood without ever needing a new liver, so we just hope Stephen is one of them.  And we'll just continue to make our monthly treks up to Philadelphia until Stephen gets totally sick of it.  But for right now, he's a happy little traveler and likes taking our road trips to Philly since we always pass the train station and see the sky scrapers.

I hope everyone is enjoying their Summer as much as we are and I'll share more pictures as the Summer goes along.





















Wednesday, May 21, 2014

Pool Time!!

Here are some photos of Stephen loving the swimming pool!  There were a lot of squirt gun battles, a lot of cannon balls, and a lot of splashing!!  I think it's safe to say, I finally have a water baby!!!















Saturday, May 17, 2014

Happy Birthday, Kidney!!!

We've been so busy lately doing new and exciting things and celebrating life, that I'm now just getting around to sharing our Happy Birthday, Kidney celebration!!  We actually reached the big one year milestone of Stephen's transplant while we were in the middle of another big milestone; Stephen's first airplane ride down to the beach!  We celebrated the day by hanging out at the beach and swimming in the pool, following by a yummy dinner cooked on the grill by Bill.  And dinner was capped off with some special deserts made for the occasion and singing "Happy Birthday" to Kristin's old/Stephen's new kidney.







The cookies and kidney-shaped cake pops were made by a local baker, Fresh Bakes in Ashburn.  Luckily, the cookies, which I stowed in my suitcase, made it the whole down to Sanibel, Florida and were a fun and delicious way to celebrate the day.

The gift that Kristin gave Stephen and to us has just been incredible!!  There isn't a day that goes by that Stephen doesn't do something that amazes me and we owe so much of that to her.  Without her lifesaving kidney, who knows where we would be today.  Certainly not taking off on vacation and spending hours at the beach and pool without a care in the world!!!  And definitely not sending Stephen to preschool; which also had been an incredible god-send to him and to us.  Over the past few weeks, he's just blossomed into this incredible outgoing, active, care-free little boy.  Health is truly the most important thing and something that you can't take for granted.  All you have to do is look back through the pages of this blog (here's the link to May 9, 2013; transplant day) to see the incredible transformation that we've been through over the past 3.5 years.  It's really mind-blowing!!

I can't wait to share more of our trip to Sanibel and all of the fun things we've been doing!  I'll post all of the pictures throughout the weekend and the upcoming week because there is A TON of photos!  But in the meantime, here's a sneak peak to show you just how much fun Stephen had and how much he's grown (this was the same little boy who was scared of the bathtub just a few short months ago) into quite a cool little kid.


Thursday, May 1, 2014

Good news

CHOP discharged us yesterday afternoon with good news: no rejection or prograf toxicity found on the tissue samples. So, they sent us on our merry way!

Now we know the increase in Stephen's creatinine is most likely just a baseline increase or due to growth or some other contributing factor and nothing that's a concern. And we can head off on vacation next week without any worry!!

Stephen's actually at school as we speak probably filling in his teachers and friends about our crazy week and all the fun he had exploring the hospital, zooming around in his pink car, and getting big band aids! 

Wednesday, April 30, 2014

Just Waiting

The biopsy yesterday went great and we're just sitting in Stephen's room waiting for the results. Stephen did a great job yesterday and charmed the pants off all of the nurses. He had a little bit of a tough time at first because he knew what was going on, but once child life brought him some cars and a ride-on car, he was over the moon. Plus, the "happy juice" the gave him to relax him worked great (until that set in and he was too loopy to ride his car and then he got really pissed!). The procedure was short and was actually done right in his room in the sedation unit and then he slept for about four hours until we were moved up to the floor and to his room.  And last night, he got to sleep in a big boy bed, instead of a crib, which was pretty cool. Thankfully, no falls out of the bed overnight.

Now, we're just sitting and waiting until we get some results and they hopefully send us on our way. Then it's back to York to pick up the dog and then home to Virginia.

Here's Mr. Happy in his cool pink car and with his "race car driver uniform and gloves."








 

Monday, April 28, 2014

Makin' Lemonade

We spent Easter this year much of the same as we did last year; at home resting and recuperating from a cold. Stephen woke up Easter morning with a nasty cough, so we decided to keep our germs to ourselves and stay home. Lucky for me, he passed his germs on to me and I ended up being the one who got it the worst. But he felt much better as the week went on and this past weekend, Stephen had a blast at his school's carnival playing games and getting temporary tattoos and then we made the trip to PA to Mimi and Poppy's house for our monthly trip to CHOP today.

Unfortunately, the trip hasn't gone completely as expected. Most of Stephen's lab work improved from the last visit (white blood cell counts, hemoglobin, etc), but his creatinine increased again. It's now been trending upward from 0.3 over the past month or two, so his nephrologist wants to do a kidney biopsy to make sure he's not having any rejection or a bout of Prograf toxicity. So we've come back to York from Pheladelphia where we'll meet up with Bill tonight and then head back to Philadlphia in the morning for Stephen to be admitted to the hospital. If all goes well, he'll have his biopsy at 11:30 tomorrow morning, have an uneventful recovery from surgery, and we'll spend one night in the hospital and then go home Wednesday afternoon with positive results.  My gut feeling is that his doctor is just being cautious and ruling out any issues and his new baseline creatinine level has increased to 0.6.  I really don't think there's anything to worry about, but I loathe being admitted to hospital and hate he has to go through another surgery.  And of course, this comes right before we're set to take a few days of vacation to Florida next week and Stephen's first airplane ride. And it's even more frustrating because he's been doing so great lately and looks so healthy!! But...it's always somethin'! 


Here are some pictures from Easter and getting ready for the Easter bunny:








Stephen grew almost 1/4" from our last visit to CHOP in March and is finally tall enough to ride his bike!



Easter, take 2! 



Monster truck at the York Revolution baseball game. This was taken 2 seconds before we almost got his by a fly ball.




Mimi and Poppy's neighbor, Mr. Dave, has a cool red tractor that Stephen loves and he was finally brave enough to ride the tractor with Mr. Dave. He's been wanting to ride it for over a year, but was too scared to get on it every time Mr. Dave came over. But not anymore!!












Friday, April 11, 2014

Beautiful Day Today

Just got back from a trip to a local park/farm this morning and wanted to share some pictures. Stephen LOVES Frying Pan Park Farm and the second we pulled in the parking lot he started shouting "Mommy, get me out!" It's such a gorgeous day and there were a lot of baby animals to see. Hope everyone had a wonderful weekend!