I'm Lovin' It

So as you can tell by the look on KJ's face, she's lovin' it...Yes, that's McDonald's slogan, as you know.  We're all lovin' it right now as we got a phone call today from the Philadelphia Ronald McDonald House that they had a room available for us tonight.  That means a whole bunch of things:
1. Some great meals...there are many great things about this place but this was one of our (well, my) highlights.
2. The boys got to come back to the place they grew to love and play at with the air hockey, toys, etc.
3. We got to spend some time seeing some more familiar faces from our (Shawna's continuous) 2 month stay here where we were treated so well and got to develop relationships with and witness families that were going through similar if not much more extreme medical

situations than we were.  In our few short hours here today and this evening we were able to catch up with the family from Allendale that we were here in the fall with as well as have some conversation with a fetal surgery mother from Idaho who is at 34 weeks tomorrow and doing really well!!  She also has a 5 and 3 year old with her so we could relate quite well with her.  Shawna also ran into a mother from North Carolina that was out here in the fall with her daughter who has a rare eye cancer that she got to know pretty well.  We are staying in the room right next to the room we stayed in last fall and the boys remember being here just like it was yesterday.  I can't wait to get up early tomorrow morning and make my early morning walk to Dunkin Donuts for coffee and a quick chat with the security guard who I hope is the same as it was last fall.  He became quite a good buddy to shoot the breeze with at 5:30am!!
We've spent much of the past two days touring around Philly and hitting some of our favorite places.  Yesterday we were able to get right to the heart of downtown and see the Liberty Bell and hop on the city double deck bus tour.  The weather was perfect...mid-80's and sunny (I THINK I could now give the bus tour and I KNOW Shawna could give it, seeing that we've taken it so many times now).  It reminded me what I want to do with my retirement....be a guide on the bus tour.  Talking about history and making bad jokes for hours on end....what a life (my students would likely tell you that's already what I do).  It is pretty bad when we recognize the tour guides and people collecting tickets and they also look at us with that look of "haven't you done this before?")  We also know that it's been a highlight etched in the memories of our boys when Peyton quickly pointed out to me the bushes at the beginning of the bus tour that he peed in last fall!!

We were able to stop at the Redding Terminal Market for some morning treats and let the boys get out and run around a bit.  We saw many of the city sites that we think are really cool and will one day actually get out and go through (once the kiddos are a bit older or we can actually tour the city without them).  Most people, when asked what the one thing they did when they visited Philly was, will say run up the Rocky Steps....we still have yet to do that....which may be due to the fact that 99% of Shawna's time spent here she was in a wheel chair or the fact that our daughter has Spina Bifida....maybe I'll wait until she can do it!!  Myles and I did do our best to celebrate with Rocky, though.

We spent the afternoon going to the aquarium on the New Jersey side of the Deleware River that was another highlight of our fall trips to Philly.  We risked afternoon meltdowns but having bought the city pass (which includes entrance to the bus tour, the aquarium or the zoo, and a few museums....yes we're Dutch = shoot, Shawna quickly reminded me to fill up the van with gas today just before we left New Jersey as gas prices were only $1.91 there - remember, no or little gas tax which equals worse roads than Michigan).  It was a good decision as the boys loved seeing tons of sea/water exhibits with tons of different animals ranging from massive sea turtles to hammer head sharks while getting the chance to pet sting rays.

We knew the weather report for today was not going to be great so we thought we'd save the museum/inside site seeing for this morning and afternoon.  After packing up our stuff from the Cherry Hill Holiday Inn Express (I feel like I've mentioned that enough times that I should get some sort of advertising fee from them).  For any of you who have spent any time with our boys at our house over the past year or so you probably have picked up on their infatuation of sorts with dinosaurs.  Well, their is a Museum of Natural Sciences that has a few exhibits all about dinosaurs with a life size t-rex and triceratops outside that move that caught the boys eye yesterday on the bus tour so we had no choice but to go there first thing in the morning.  After experiencing what big city driving is like (going up to the 6th floor of a parking garage to find that there were no spaces available, almost getting stuck behind a moving truck in a back alley (see pic below) as it almost got stuck, we finally found a parking spot and made our way to the museum.

After this dinosaur exhibits, I think Peyton now has another career choice to go along with being a food trucker chef man or a zamboni driver....an anthropologist!  That's more like it, young man....not that I wouldn't be thrilled to tell people in the future that my son was a zamboni driver or a food trucker chef man as we had Philly Cheese Steaks for lunch from a food trucker chef man and they were delicious.
We made our last stop at the Franklin Institute which is a museum focused on kids (probably more in the late elementary-high school range) a little older than ours, so we didn't stay long as we had just received confirmation that we'd be able to shack up in the Ronald McDonald House for the night and wanted to make our way over (we packed up from Cherry Hill crossing our fingers we wouldn't be going back, although we do love it there).  The boys really liked the sports exhibit where there are lots of interactive activities that break down sports-specific actions scientifically....especially the small two-lane track that they raced on about 30 times (one, because they loved doing it, and two, so that they'd get worn out and hopefully take great afternoon rests....which didn't happen!!).

As you can see in the pic above, both boys were worn out and couldn't walk the few short blocks back to the van and without the double stroller with us, they had to adapt (one of the great lessons they've had to learn over the course of 10 months...Choose Joy, right?....adapt the best you can to the situation you're put in, like being able to take advantage of Dad when Mom was in Philly by getting him to serve chips and cheese in the bathtub).
So we all are about to shut our eyes in our beds in the Ronald McDonald House, just a few short steps from the room we spent so many nights in this fall and another place that we will never forget for making our time in Philly so special and memorable.  It's great to now have Kierstyn be able to enjoy it with us as well.  Tomorrow we head to CHOP to do their Spina Bifida Clinic and meet with lots of the medical team that took such wonderful care of us.  We are excited, to say the least.  Here are a few links to news articles about the Fetal Surgery Reunion that we attended on Sunday as well as the Fetal Surgery Reunion video that was made with a quick pic from each of the fetal surgery kids that attended...it's pretty cool.  Enjoy!

http://www.prnewswire.com/news-releases/the-childrens-hospital-of-philadelphias-20th-annual-fetal-surgery-family-reunion-gathers-families-from-across-the-us-300290325.html

http://philadelphia.cbslocal.com/2016/06/26/chop-fetal-surgery-family-reunion/

http://www.nbcphiladelphia.com/news/local/CHOP-Hosts-20th-Annual-Family-Reunion_Philadelphia-384460381.html

Here's the video:
https://www.facebook.com/TheCenterforFetalDiagnosisandTreatmentatCHOP/videos/1211229942253070/

CHOOSING JOY, Ronald McDonald House Style

-Jeff

"Feels Like Home To Me"

I started the last blog with lyrics from Notorious BIG so today I'll start with lyrics from a little different genre of music:
https://www.youtube.com/watch?v=t-ouxPhYy7Y
Chantal Kreviazuk's "Feels Like Home To Me".....
This is the feeling we've felt since our arrival in Philly on Friday evening.  The more we've been able to get out and see past sites that we became so familiar with, we've felt more and more like we're back home.  We didn't really have a plan for yesterday but it just so turned out that the U of Penn's Men's Basketball program was hosting an Exposure Camp for high school recruits so Peyton and I thought it necessary to find our way to the legendary Palestra and watch bball from around 11am-4pm!!  The Penn Bball staff was welcoming, once again, and allowed us to spend the day at their camp.  Truly a great group of guys who, with no surprise, remembered us from the fall and our visits to some of their practices and invited me back anytime we'll be in Philly in the future....Go Quakers.  It was also pretty cool to be in the Palestra just after Villanova won the NCAA Championship this past spring as there are all sorts of tributes and displays honoring past teams that played in the Palestra, as there is one for the very unassuming and underdog 1985 Villanova NCAA Championship team.

After a great day of hoops for Peyton and me, some naps and swim time for Shawna, KJ, and Myles, we all enjoyed a little extra time in the outdoor and indoor pools that our boys have come to love at the Cherry Hill Holiday Inn while diving into some Pizza King (New Jersey style....not Indiana style, although it is very similar in style and taste!!).  Throughout the day we ran into a few families that were here for the Fetal Surgery Reunion and got a chance to chat with them.  It's always a bit relieving to talk to and experience others that have gone through and are going through some of the same situations that we are.  We were all pretty exhausted and found our way under the covers by 8:30pm (previous night bedtime saw 11's on the clock).  Shawna has drawn the short straw in terms of bedmate the past few nights and Myle's kept her up, again, last night until about 10pm with his tossing, turning, pillow throwing, talking, rustling, etc....I got Peyton....easy zzzz's for me!!!
We woke up this morning with the excitement of the anticipation for the Fetal Surgery Reunion.  We spent a little bit of time hanging out in the hotel room before departing for CHOP.

 As you can see we've found ways to adopt to living with 4-5 people in one hotel room through our experiences over the past year...maybe another how to book I can publish along with my Roadtrip Survival Book (see pic above...using the stroller as a high chair for feeding infants!!  You learn a lot about people when you live in close quarters and hear and see things you may not usually experience....like Myles now referring to his chocolate milk juice boxes as his "beer" (hey, not nearly as bad as the family in the hotel that has a 2 year old that, as we were waiting for the elevator yesterday said "What the f*** is taking so long!!!").  Oh yeah, just when you think you've got it bad or something is going wrong, there is usually someone else with bigger issues!
We made it to the reunion around 9:30 and found a table just in time as the huge, outdoor tent set up filled up fast and over the brim with people of all shapes and sizes there to celebrate the amazing medical miracles that CHOP, Dr. Adzick, and his fetal surgery teams have performed over the past 20 years.  I'm not sure the words to describe it, but to see so many (and this had to be a small percentage of all of the people they have performed procedures on) families that have had their lives changed due to the fetal surgery procedures was quite amazing.  We saw many of the families that we got to know while living in Philly and many of the medical team that we were so lucky to have accept our family and treat us.....

Ellen, our nurse/case coordinator from our initial consult in Philly in mid-August....

Jessie...one of the mid-wives....

Dr. Julie Moldenhouer, Maternal Fetal Medicine Physician, who took part of the first surgery (she's a Michigan native so we quickly had a bond with her....

and lastly, Karen, our Certified Nurse and midwife.  We built a very close bond with her in our time in Philly and if we were going to see and catch up with anyone, she was at the top of our list.  We also saw many of the nurses that took care of us (well, Shawna and KJ mostly) and were so good to us as well as the receptionist, Dee, who always was the first smiling face we saw every time we had to go to CHOP for any sort of appointment.  We'll be seeing many more of them as we head back to CHOP on Wednesday for appointments for KJ and to go through CHOP's Spina Bifida Clinic.

Here is the initial pic of the whole reunion....it's pretty hard to see but if you look up near the front and to the right, you can pick out a small orange spot just beyond the light blue shirts (they are the fetal surgery team)...that would be us!!

Hopefully the video I loaded above works of Peyton surfing at the reunion.  Seeing his subpar performance, I think he has a better future as the zamboni driver or food truck chef man that he talked about at the Flyers game he went to in the fall or guys on the streets by the Universities and hospitals that he thought he could be (I blogged about those long ago) and not going into professional surfing.

The day was full of fun and games, bounce houses, blow-up obstacle courses, merry-go-rounds, etc. and a family selfie where Myles head got CHOPped off (sorry, bad teacher joke...see pic above).  It was a day of hope for us, largely in part because we saw so many families that have been navigating their way through journeys of spina bifida and/or other fetal surgery repaired children.  To see so many youngsters living great lives, despite being in wheelchairs or walking with braces was encouraging to us as we move forward on our own journey with so many unknowns still out there.
We're closing down the night watching the US Olympic Trials for with the boys mesmerized with the gymnastics!!!  Go USA....just wish our soccer team could have performed a little better v. Colombia last night, although Peyton was cheering for Colombia the whole time.  C'mon, man.  I guess he knows how to pick a winner....that's why I'm glad he hasn't jumped behind any of the Philly professional sports franchises as they all are in pretty bad situations (the big joke around the area is how the quarterback the Eagles selected with their first pick in this springs draft managed to lock himself in a gas station bathroom last week).  We're headed back into the city to do some site seeing tomorrow so we'll see if the 76ers latest draft pick (the #1 overall pick from LSU, Ben Simmon's) has been glorified yet by the city as the savior for the franchise.
Being back at CHOP, Cherry Hill, and the University district of the city by Penn and Drexel has truly made it "Feels Like Home To Me."  We can't wait to spend a few more days in our "Home Away From Home."
CHOOSING JOY

-Jeff

Going, going, back, back, to Philly, Philly

So we're back and for all of you Notorious BIG fans, just like he says in one of his songs about Cali, we spent the day "Going, going, back, back, to Philly, Philly."  We have a small, decorative chalk board on our wall in the kitchen and have had our Philly Countdown on it and the day finally arrived.  We knew we would be making trips back to Philly for follow up appointments for KJ every six months or so for the first few years so that we could use go through their Spina Bifida Clinic (more to come on that soon) and to allow the medical team at CHOP to do some follow up and keep "stats" on her to use for their record keeping....remember, the surgery Shawna/KJ has is still a rather new medical procedure so tracking the patients and the results is something very important to the doctors.  Shawna had originally planned to make this a girls weekend, with just her and KJ coming out on a quick 1-2 day trip but one-by-one, the boys joined in.
The timing of the trip was close to perfect as the medical team likes to see their patients at about the 6 month mark.  Well, we're a little behind that, but we also saw that this Sunday was the fetal surgery reunion that CHOP hosts every year and this year was the 20th anniversary.  They take a group picture every year and those pics hang in the hospital.  We've seen them all and it's amazing how the group has grown from having the reunion in one small room to now, having a full out party/carnival/fair.....lets just say I think it will be like a Crazy Bounce on steroids!!!  The Carlson Clan expanded from just KJ and Shawna coming out as I wanted to join the ladies to stay up to snuff with all of KJ's medical appointments/progress/updates.  So, for about a month we were planning on heading out, the three of us, until Peyton, our nosy little child who is at the age where he listens to EVERYTHING we talk about and asks about EVERYTHING we're talking about, overheard Shawna talking on the phone about coming back out to Philadelphia and automatically assumed he was invited.  We couldn't tell him no as he and Myles think Philadelphia is their second home and still talk about everything we did out here over the past year all the time!  So, the group expanded to the four of us and when we sort of (pretty much did) give/push out our dog, Jade, to Shawna's parents (well, I think more or less John took her in when we mentioned we may put her up for adoption and I'm sure Janet is thrilled to have a dog, now, for good just as their about to break ground on a new house and have brand new carpet for a muddy dog to ruin....sorry Janet, plan on us paying for carpet cleanings for you a few times a year), there was then no one available to stay at home with Myles so we thought it best to bring him as well!!
The trip started out very well and right on-time as we planned for and made a 6:30am departure from Zeeland.  Both boys were overly excited so getting them out of bed and into the car was no problem at all.  A full tank of gas and a few cups of coffee along with donuts got us all started on the road....unfortunately as our van gas tank emptied as we drove, my gas tank filled up and we made our first pit stop all of 35 minutes into the trip.....at Lowell!  Hey, a man's gotta go when a man's gotta go, right?  Back me up, gents.  It was either that or kill my family by fumigating the van with bodily odors.
From there we did make some pretty good headway, well into Ohio for lunch at one of their great rest areas along the turnpike.  While discussing the turnpike, I think we should have a sign on the side of it or at one of the rest areas thanking Kierstyn Joy Carlson for all of the contributions made on the tolls from people traveling out to Philadelphia on her behalf.  We really appreciated the smooth, well-kept highways today, though, as Peyton needed a potty badly and we weren't ready to stop so he made his initial "pee in a bottle in a moving vehicle"procedure.  C'mon, we've all got a great story to tell about urinating in a vehicle, don't we (Mom and Dad, remember our trip out west...and the Coke can Dad thought I WOULDN'T overflow.....Aldrich, remember driving with Kopas to Salem, Virginia....and the stories could go on forever!!!).  But Peyton pulled it off without spilling a drip!  Flawless....such a proud father.  We did finally get some lunch.

The trip was actually pretty uneventful but very memorable for a few reasons.
1) It's funny the little things we remember from the numerous trips this past year, back and forth from Zeeland to Philly and from previous trips to Pennsylvania to visit Chad and Kath when they lived in State College and Altoona.  For example, the skyscraper Shawna swears she sees every time we cross the Cuyahoga River?  Hmmmmmm......
2) I always thought it was just me being a dad and feeding my kids anything at any time of day to keep them happy while on our road trips together but even Shawna was opening up a bag of Skittles for the boys at about 9:30am....I do recall thinking those road trips were just "survive and advance."
3) Uneventful in the fact that the kiddos were road warriors, once again, up until we hopped back in the van after a pitstop and no naps had been taken.  Peyton decided that the surprise from "Mom's Bag of Surprises" was one he didn't like and it, along with stuffed animals, empty Capri Suns, and anything else he could get his hands on came flying at the back of our heads, nearly decapitating us!  Simoltaniously, Myles was losing it as he had just fallen asleep and was awoken from his slumber at the previous pit stop and wanted to watch a specific DVD that mean mommy and daddy weren't going to allow (we didn't think Animal House was appropriate as my dad did for Chad and I at about the same age....I think he slept on the couch for a few nights once Mom found out about that).  Kierstyn also decided to then cry the last 2 hours or so, but as most of you parents know, after 1 kid, the crying and screaming of a second or third can sometimes just become white noise.....so we survived, and it really wasn't that bad.  We also found out what is possible to do with a vehicle that has it's air-conditioning stop working....most people would sell it, but not so fast my friends.....

That's right, just install a window air-conditioning unit in!!!
Well, the real reason for the trip is to get check-ups for Kierstyn and see some of the people and places that made our journey this past fall a truly positive experience when we were dealt a hand of cards that we weren't prepared to handle on our own.  I hadn't even thought about the emotions that would come back to us as we approached Philly, but when we did get close, and the skyscrapers came into view, and familiar exits passed, the excitement in the boys voices brought on some feelings I was not expecting to have.  I/we truly missed Philly and all that it did for us and made us feel at home in our greatest time of need as a family.

Even our arrival at the Cherry Hill Holiday Inn where we spent weeks this past fall was a little overwhelming.  The smell of the hotel lobby felt like home....swimming in the pool (nice and warm, thank goodness), riding the elevator, etc....it really feels like home.  Peyton and Myles were already running around the place acting like it was just yesterday that it pretty much was their home away from home.

We're looking forward to the next few days in our favorite "big" city and revisiting many of the places that we thought we may never want to see again, dreading having to be away from home (at least for Shawna for 3 months), "stuck" in Philadelphia, but have more than missed since our departure December 6th.
I add this thought in here that, while I type out all of this about Philadelphia, so many of you know exactly what and where I'm talking about as so many of you made sacrifices for us and came out to see us while we were out here and got to experience this great city for yourselves....we can't thank you all enough (and to those of you who gave in some way, shape, or form to allow for others to make the trek out).
We'll keep you updated the next few days as we enjoy the city and anxiously await our appointments on Wednesday.
CHOOSING JOY with ease.....from Cherry Hill/Philadelphia

-Jeff