Return On Your Investment

Yep, she's 2 today and trying to figure out why she got a cake, ice cream and a candle last night and also a cinnamon roll with a candle this morning (notice it's the same candle...yes, we're Dutch...no hard feelings). 
Just like the stock market (here's the economics teacher coming out in me), when you make an investment you hope your return is high but likely may not be in the short term.  Well, as CEO (yes, I'll consider myself CEO but Shawna is the Board of Directors and truly controls everything at Carlson Inc., although if you're around us enough, Peyton may disagree with this all) of the family, I'd like to announce to all of you shareholders and investors that your 2 year return is very high!!  So many of you invested time, sweat, tears, blood, money, prayers, etc., in us over the past 2 years that you deserve a HUGE return. 
There have been many more highs than lows and we've seen a tremendous amount of progress with KJ.  Her physical abilities are being worked on with physical therapy on a weekly basis (her "exercise" helper, Myles, also has fun at the PT appointments).

Kierstyn has recently figured out how to wheel herself around in her bumbo wheelchair and stander wheelchair, which has given her some independence.  It has amazed us how quickly she has figured out how to maneuver the chairs (consider this your warning that if you're around us to maybe keep your shoes on so your toes don't get rolled over and it's probably smart not to walk backwards as she can sneak up on you and trip you up!!).

She has been a blessing to us and continues to bring JOY to us on a daily basis.  Her smile is contagious as many of you have experienced that and her friendly waves (definitely a trait from Great Grandpa Lamont).  We continue to learn a new normal and continue to be amazed at the outpouring of prayers, love, encouragement, etc. that we receive.  Thanks so much to you all.
Oh yeah, we have two boys still...they're doing great!

Sorry, again, for my lack of medical knowledge and insight.  If you remember from our previous blogging, Shawna is the expert in that field as she's been the head of our medical staff and may as well have an honorary medical degree with all of the time and energy she has poured into our journey (plus she has me to deal with and my ailments and Clark Griswold capabilities).

-from Zeeland/year 2...check

CHOOSING JOY

Isn't It Ironic?

There is my princess, fast asleep, but yes, unfortunately those are medical cords attached to her.  Which means, yes, we pounced on the opportunity to take full advantage of our great medical benefits as early as we could this year!!  Pretty sure the Helen DeVos Children's Hospital was not offering any weekend lodging deals this weekend which makes me fairly certain we'll meet our deductible by tomorrow morning!  KJ surgery #4 unexpectedly occurred this evening around 7pm after Nurse/Doctor Shawna noticed her scar getting very red this morning and starting to shine up like it did a few months ago when it became extremely infected, leading to a surgery to drain all of the "gunk" (I'm sure there is a medical term for it but us normal people would identify better with that).
So, she packed up Myles and a duffel bag (Vera Bradley of course) and headed over to GR where she figured another surgery would be needed and sure enough, she was spot on.  Our typical neurosurgeon (that's not typical to have a "typical" neurosurgeon, is it?) was on one of his two monthly visits to see patients in Traverse City so his "sub" performed the surgery to re-drain the infection just underneath KJ's scar on her lower back.  Sorry, Doc, but I can't remember your name, but kuddos to you...another rockstar in terms of personality, bedside manner, patient care.
As we all get a touch frustrated when these things pop up, although it's sort of becoming the new norm that have our cheese moved, I think Myles was the most upset.  His buddy, Aiden Damstra, was over on a play date as his Mom (Julie) and Dad (Marc) were at home with their newborn Jordan (congrats!!!).  So, Shawna had to call that early and bring Aiden home which apparently, according to Myles, interrupted a hockey game (which I later found out never was played) and a basketball game.
He told me he was pretty upset, although this was in a mood you can only imagine at around 2:30 this afternoon when he and I left the HDCH to get back to Zeeland to pick up Peyton from the bus, with no nap (and as you all may know by now, Myles takes long enough naps on a daily basis - still - for our whole family)...in fact, a short 5 minutes into the trip home....

Success scrambling, though, got him home and another hour of sleep, Peyton off the bus, and the boys to Papa Bob and Grandma Sue's house with their suitcases packed (they each got suitcases for Christmas from my parents with their names on them in preparation for the Carlson Family Odyssey to visit Aunt B and Uncle Brookie in San Diego this summer).  Yes, suitcases for a one night overnight with cousins Bryce and Brielle.  Peyton has had his suitcase packed for San Diego for a few weeks now....that is definitely the Shawna in him...her countdown to New Smyrna Beach for spring break is up on a chalkboard in our kitchen/dining room and I already see signs of packing around the house that have taken place.

I was able to make it back to GR to see KJ just before she went into surgery as I was called out to by a nurse in the waiting room to go back and see Shawna and KJ...."Are you Jeff....the really tall dutch looking guy?"  Thanks Shawna, that's the best you could do to describe me?

So, we waited for about 1:15 minutes while KJ was in surgery, got some Zoup for dinner and watched Fox News in the waiting room (I became a bit nauseated while doing this and I'm pretty sure it wasn't the Zoup...Oh yeah, may have been that Kellyanne Conway was being interviewed....sorry, shouldn't bring politics into this).  Well, Fox News for a few minutes at least until Shawna went out of her way to turn it off.

Which leads me to the title of this blog...Isn't It Ironic, like the Alonis Morrissette (yes, spelling is way off) song.  We found ourselves chuckling at the fact that our daughter and Shawna will, more than likely, be spending the next 72 hours in a building providing us the best medical attention in the world while the boys and I will be spending the greater part of our afternoons and evenings tomorrow in buildings with "DeVos" (Helen DeVos Children's Hospital/DeVos Fieldhouse) on them while there may have been a chance that, had this medical setback not occurred, Shawna may have had the opportunity to participate in a march in Holland protesting, in large part, against someone with the same last name....huh.  Interesting.  Not that I'd support BDV in her nomination for a job, but I will say thanks to the DeVos family for putting forth the funding to provide great facilities that we've been fortunate enough to be the positive beneficiaries of (not sure if being a philanthropist qualifies you to become Secretary of Education, though).....shoot, said too much.  Sorry, didn't mean to offend anyone, just stating my, what some may call, "alternative facts"....shoot, did it again.

The sun will rise tomorrow....KJ's healing will continue under the great medical team assembled at HDCH, Shawna will become more knowledgeable of medical procedures and how to best survive in a children's hospital (Ah ha, dear, that is what you should do....write a survival guide to children's hospital and I'll publish my survival guide to traveling cross country with a 5 and 3 year old - Chapter 1...How to Use the Same Diaper Numerous Times Over for Numerous Different "Accidents"), Hope will play Albion (come out to the game as it is a purple night in support of the Van Andel Institute for Cancer Research...and who doesn't love purple....Go Cats, who by the way, are 17-4 in Men's hoops right now), and the Carlson's will keep:

Choosing Joy

Thanks for your thoughts and prayers!

-Jeff 

ONE

We did it - we survived the first year and by golly it was definitely a group effort (it takes a village, right?)!

The wonderful doctors in Philly warned me that the first year is really tough.  In October our physician at Mary Free Bed said, "You're almost through the toughest year."  I think a lot of people who go through Fetal Surgery think the hardest part is done after delivery, but really the whirlwind is just beginning... take a look at Kierstyn's past medical year,
MRIs - 4
Surgeries - 4
Doc apts - 47
Physical Therapy visits - 41
Ultrasounds - 6
Inpatient days - 9

Wow that's a lot, sorry Blue Cross Blue Shield (and thanks) :/

I didn't tally up Peyton & Myles's appointments that add to the mix or how many trips to Starbucks/ Tim Hortons for my sanity.

On a more exciting note, we also had a road trip to Rock Island, IL, a week in Florida, two trips to Philadelphia, lots of weekends at the cabin, many trips to the beach & splash pad, grandma's birthday in South Haven and lots of basketball/soccer games.

We are back on shunt watch for a little bit.  After Kierstyn's stay at Helen DeVos our local neurosurgeon is closely watching her ventricles.  We have another MRI scheduled for Friday and will also see a new physician, a pediatric Ophthalmologist.  I am hoping these are all precautionary measures and after these couple weeks of close monitoring the appointments will start to slow down.  As the physician follow ups start to slow down, the physical therapy picks up.  We are looking forward to spending lots of time at Mary Free Bed with the pediatric outpatient physical therapy team.  They are amazing and I continue to feel so lucky to have such a great medical team supporting us from everyone at Mary Free Bed, Helen DeVos, our Early On therapist and our pediatrician.

The past year and a half has confirmed what Jeff and I already believed.  Making memories & having experiences with our kiddos is the most important.  The best thing you can do for your daughter is give her an education, experiences, and show her the world.  One of our favorite doctors said that to me this fall and I feel the same way for all of our children.


Here are some pics from the past year...

birthday crown

I can't believe it either Kierstyn, you're 1!

NICU at CHOP

soccer kiddos

new wheels

dinosaur obsessed!

loving on her brother

splash pad fun

Myles is nursing his baby :)

hang on Kierstyn!

Myles was really proud of his purple cast (and it was water proof!)

Pavlik harness for hips

We are partying it up tonight with brownies, ice cream and Vitales pizza.  Its a celebration for all of us.  Thank you for following along with our family!

Choosing Joy,

Shawna

Almost 1!!

Our family is getting excited to celebrate KJ's 1st birthday at the end of the month.  Wow has time gone by fast.  We're thankful that we've encountered very few medical hiccups this past year in a relative sense as we've realized that most families with spina bifida kiddos usually run into some complications through the first year or are in need of much more medical attention than KJ has needed.  Shawna and the princess still have weekly physical therapy appointments and some medical appointments here and there but that has just become the new norm for the Carlson's (Myles really enjoys the PT as well as he thinks it's his "exercise" time to play on mats and with all sorts of work out stuff).
Having said that, we did have a bit of a scare on Monday evening when we noticed a large, shiny, warm bump had started to grow around KJ's incision on her lower back.  Erring on the side of caution we decided to take KJ to Helen DeVos Children's Hospital to have their neuro people take a peek and see what the issue was.  Turns out they admitted her right away and scheduled an MRI for 6am the next morning and put her on an IV.  Well, long story short, KJ and Shawna are still at HDCH.  Fortunately, we've learned to love children's hospitals 1) for the people watching!! 2) to see what unbelievable medical procedures are done to make the lives of children and families in need are out there, and 3) selfishly, you realize how lucky and blessed you are when you come across some of the situations and circumstances you witness and are reminded to count your blessings.  I would suggest anytime that you think life is tough, take the drive to a children's hospital and you may perk right back up....I don't want to make it sound like we take feel good about seeing other peoples struggles, but it reminds you that others are fighting like heck v. much stronger opponents than we have!!
Another lesson we've learned is that CHOOSING JOY is synonymous with CHOOSING PATIENCE.  The MRI scheduled for 6AM didn't occur until 4PM and when a baby can't eat for 4 hours prior to that, oh boy, watch out.  The MRI showed an infection that had yet to reach or get under any of the area from her previous surgeries but was close.  Our neurosurgeon felt it necessary to take care of the infection and immediately brought KJ into surgery to clean out the infected area.  The surgery was a success, according to the docs (and KJ as one of the nurses said the first thing she did when the anesthesia wore off was smile, giggle, and clap!!).
We've been told an infection like this probably occurs from situations like KJ sitting in a bath tub of still water too long & bacteria collecting around the site.  Basically, it happens.  We're now just waiting for the infectious disease team to get results from the lab to see specifically what the infection agent was so they can prescribe a specific antibiotic for KJ before sending her home.  We're hoping for a discharge in the next 24-48 hours but these things can take time so we're still a bit unsure of when the family will be back together in Zeeland.  It's almost been a little deja vu from last fall with going back and forth for the 3 amigos from Zeeland to a children's hospital and Shawna and KJ being away....good, bad, and the other.  Even Myles talked my ear off in our drive to the hospital last night about all of the fun he had in "Philiandelphia", as he pronounces it.  He thinks we're going back for his cousin Shane's birthday as we celebrated a whole bunch of birthdays out there last year.
So, current situation is that KJ is on a very broad antibiotic but not hooked up to any machines.  Her drain has been taken out and she's just being detained, kept, quarantined, whatever you want to call it until they can give her that specific antibiotic and see how she reacts to it.

 Dad's magic touch....or just the fact that she has been extremely tired!

 "C'mon people, do I look like an 11 month old that needs to be kept in a hospital"...#freeKJ

 Big bro Peyton cuddling up on the crib/bed!

 She's developed the need to suck her thumb like Myles....nice way to calm herself down.

 I think we have about a bazillion of these pics...Mommy/KJ in carrier/coffee in hand!!

And this piece of work loves getting on the loose in children's hospitals with all of the fun toys, displays, etc. that are set up for kids!!

Looking forward to the holidays and CHOOSING JOY!

-Jeff representing the Carlson Clan

Sweet Home, Zeeland

The ladies are coming back home tonight!!  KJ's recovery from surgery has been great and as I type this discharge from CHOP and packing up from the Ronald McDonald House is in progress!!

The news of today's discharge brought smiles to the faces of both KJ and Shawna this morning.  It'll be a late night but that's okay.  Not that the boys back home have had struggles surviving, shoot, 5 days was a cake walk compared to the 2 week stretches last year, but we're looking forward to getting the girls home (not sure if the girls really want to come back after their girls weekend of siteseeing!!).

 Betsy Ross House

 Famous Philly Cheesesteak

 Diaper change in a park (and big wave from KJ)

 Betsy Ross House

Putting on sun tan lotion for bus tour

Independence Square with Independence Hall in the background (a Civics/AP Gov't teachers dream)

To update you all on the medical side of things, Shawna and KJ had to be at CHOP at 6am yesterday morning for pre-op stuff.  KJ was on her way back (no pun intended) to surgery around 9am.  Dr. Hauer, the doc who has performed on KJ before, was not back in surgery much more than 30 minutes.  He informed Shawna that he thought everything looked good and was able to get a good look at her nerves around her spine and for what he saw was very optimistic about we can hopefully shoot for in the future with her ambulatory abilities (don't worry Usain Bolt, she won't be breaking any of your world records!!).  That being said, we still will not know on a lot of those issues until she gets older, but c'mon, who cares about her abilities in terms of walking, she's alright got quite the ability to smile and we love that!!  

The girls were put in the PACU (Post-anesthesia care unit) which worked out great because KJ got her own room, allowing Shawna to stay overnight with her (plus, apparently a cart comes through that unit a few times throughout the day with WAWA coffee products, free of charge....WAWA coffee became quite a staple in my diet while we were in the Philly area last year).  I think Shawna was trying to make me jealous with the WAWA stuff and she sent me a pic of about every meal she had at the Ronald McDonald House as she knows the best part of my days out there were the meals that were served!!

KJ was a bit fussy post surgery (understandably) and struggle for a few hours but with meds calmed down and was able to get some good rest and get the healing process going.

As you can see from the scar, if you've had a chance to see her scar before surgery, this now looks much more cleaned up and small with the work the "really good looking" plastic surgeon, Dr. Taylor, was able to perform (those were the adjectives Shawna used!!).  So, now when she's in her teenage years KJ may feel much better about wearing a two piece bikini on the beach....her Dad can't wait!!

Once again, we've been blown away by the support through phone calls, texts, emails, face-to-face conversations, thoughts, and prayers we've received the past few days.  Thanks to all for that/those.  Another Philly experience always helps us to remember how blessed we are as a family and always brings back some great memories of the journey we've been through over the past 13 months.  Can't wait to pick up the girls tonight in GR!!

You know it....CHOOSING JOY

-Jeff

Home Away from Home

Kierstyn and I made it to Philly this morning around 9am.  We had an early departure out of Grand Rapids and had two very quiet flights.  KJ is a rockstar on the airplane see pic below.  Delta was amazing and rearranged seating so I had a row to myself on each flight!  I'm hoping to have a repeat performance when we head home.

I tried to travel light this time & didn't haul the carseat with me which means I had to figure out public transportation.  I didn't have great luck figuring out the public transportation in Europe and followed Jeff around like a lost puppy.  And there was one time my high school girlfriends Ashley & Alison and I tried to figure out the New York Subway system and ended up just taking a cab.  But low and behold Philadelphia's SEPTA is awesome!   It was a 10 minute ride that cost me $8.  The conductor even loaded my stroller and luggage on and off the train for me too!  I rolled down off the train stop with the stroller and suitcase and to see our favorite place.

The Children's Hospital of Philadelphia

We had some time to kill since KJ's appointment wasn't til 2pm and we didn't have a place to stay yet.  The Ronald McDonald House doesn't call until the day your requested stay begins to let you know if they have availability.  I was really hoping we weren't going to be homeless but at least its hot outside if we were going to be camping out on a park bench.  We grabbed coffee and found a shaded spot in a park on Penn's campus and finally got a call that the Ronald McDonald House had a room for us, hallelujah!  We hoofed it the mile to the house and got all checked in before the appointment.

Kierstyn is pumped we didn't have to sleep on a park bench

CHOP was having their version of American Idol this afternoon

Home Sweet Home

Our Dinner tonight was "summer picnic"

KJ had sweet potatoes

Homemade peach cobbler

Jeff always likes to know what meals he's missing so I always send him pics.  Each night we have a guest chef and on the weekends we also get brunch.  I love this place, its like coming home.  The workers ask about my boys, Jeff and my mom.  Its been nine months since we were here and they still remember my name and Kierstyns.  I got to meet another Fetal Surgery mom who is from Louisana and just passed the 34 week mark.  Its so great to meet other moms, compare notes and cheer each other on. God Bless the Ronald McDonald House!

We've had a busy day and walked back and forth to CHOP twice.  I blew the tire out on my stroller and found a bike shop that fixed it for me in 20 minutes. Kierstyn and I are going to do some site-seeing this weekend and then head over for surgery bright and early Monday morning.  The surgery takes about one hour but with pre/post surgery she will be back in the operating room for closer to 2-3 hours.  Its scary to hand your baby over to surgeons but I am so thankful for the wonderful people of Philadelphia who continue to show us love.

The boys are staying busy at home.  Peyton had his first week of Spanish Immersion kindergarten and is loving it.  Myles is big man on campis (home) these days and has had a great time calling the shots.  It was tough to leave them behind this time, Myles has told me three times now that he really wanted to come with us.  Next time, bud!  Peyton has his first soccer game tomorrow that I am bummed to miss but looking forward to hearing about it on Facetime.  

Choosing Joy from PRMH,

Shawna & Kierstyn

Just Can't Get Enough

Just Can't Get Enough!  To quote the Black Eyed Peas song.....

Boy I think about it every night and day
I'm addicted wanna jump inside your love
I wouldn't wanna have it any other way
I'm addicted and I just can't get enough

I just can't get enough
I just can't get enough
I just can't get enough
I just can't get enough

So that's how we feel about Philly and because we can't get enough of that wonderful city, we (or some of us) are headed back out.  As many of you know, when we met with our surgeon late June during our family trip to Philadelphia, he thought it would be in KJ's best interest that we consider doing a scar/wound revision surgery for a few different reasons:

1. Due to what he thought was probably some scar tissue having build up around her scar, if that was left alone, it could cause some discomfort and possible mobility issues for KJ in the future as she grows (and for any of you that have seen her recently, she's not getting any smaller!!!).  

2. He was also realistic in the fact that her wound isn't a "beauty" mark and the more natural it can look, the better it will be for her as she gets older in social aspects and self-confidence.  Sadly but realistically, we need to be ready for those issues with lots of the spina bifida "stuff" as she grows older that there are going to be social issues (chances are she will have little to no bladder control and who wants to be that kid in 6th grade that pees their pants...yikes....she's not going to have Billy Madison/Adam Sandler to be there for her...not that we'd want him to be her savior....https://www.youtube.com/watch?v=8Wxhqc6wdH4).  Although, as a father and seeing what skimpy bikinis high school girls are trying to rock out on the beach, maybe having a daughter who isn't keen on wearing a two piece wouldn't be all that bad!!!

Dr. Hauer made it sound like a very routine surgery that he and the plastic surgeon he does many surgery's with could do and if that was ALL they had to do, it would be a night or two at CHOP for KJ.  He needed to get an MRI done to make sure that there were no other issues (and on visual eye test he didn't seem to think there were any) like teathering of the spine that occur with many kiddos with spina bifida or cysts.  If that were the case, it would be a much more serious surgery and would require a longer stay at CHOP for KJ.  

We quickly had an MRI done at Helen DeVos Children's Hospital in July and got the results out to CHOP so they could read the MRI and give us some dates that were open for surgery.  Our hope was to get this done ASAP as the school year was rapidly approaching and I'd be going back to work and our little Peyton (are you serious, our little man is going to be in school this fall!!!) will be off to school for the first time and we didn't want to be gone for the first few days.  Our hope was that CHOP, once they received the MRI, would get back to us within a few days.....not so fast my friends, right Shawna.  Our "choosing joy" motto/mantra/theme was tested as we (Shawna) ended up having to make numerous phone calls to get the MRI where it needed to be and to get the right people getting our schedule started.  But, hindsight being 20/20, we know they are dealing with some nasty issues with kiddos and families so our surgery was probably not priority #1.  

Finally, we got word a few days ago that there was an open surgery date Monday, September 12.  We jumped on that.  It's been a gentle, amusing, interesting reminder of all of the messy logistics we went through last fall about this time in planning for the few months we saw in our future.  I think our plans are that Shawna will fly out with KJ on the 8th or 9th for her pre-surgery appointment on the 9th, spend the weekend in Philly (hopefully at one of our homes away from home, the Philadelphia Ronald McDonald House!!!), stay with her through surgery and hope to be discharged from CHOP on Wednesday and fly home then.  I'll be home with the boys teaching, coaching tennis, getting them (or having others) to Ms. Jen's (Myles) and school (Peyton)....and doing those things we did all last fall (boys only sleepovers in dad's bed...chips and cheese in the bathtub...skittle for breakfast...and the list goes on....I don't think Shawna will ever truly know what went on in her absence).  Like I said, a little reminder of what last fall was like.  

We've gone over the 1 year anniversary of getting the knews of KJ's spina bifida and all the emotions and discussions we had about what our future could look like.  Now that she's almost 9 months old, we've said a few times, "Wow, seems like so long ago."  Funny, because so many of the great people that were out in Philly, especially at CHOP, said that would be reaction a year later....that it all seemed so overwhelming going in, but we'd make it and afterwards look back and see it as just a blip on the radar.  

We're still reminded on a daily basis of what this spina bifida deal is going to be, but that blip is becoming smaller and smaller as we move further along with our lives.  Like I said, there are daily (or weekly with appointments) reminders...but that's not a complaint.  I was able to go with KJ for the first time to Mary Free Bed and her physical therapy session...yeah, a little goofy that a 9 month old needs physical therapy but we know that the earlier we get her going, the more mobility that she could have when she's older.  Her physical therapist, as I expected her to be from the reports Shawna has given me, is awesome and seemed very upbeat and optimistic already about the progress that KJ is making with her core strength and other simple toddler benchmarks like sitting up on their own, rolling over, etc. (although what does any of that stuff mean...Myles didn't walk until he was 18 months...LAZY!!! Buche or Carlson?).  She's already showing signs of being one tough cookie and reality is she's going to need to be....but it was very cool to be there and see the opportunities that are available for our population with physical disabilities...let's just say she won't be sitting on the sidelines (has anyone been watching the Olympics...well, I'm addicted and this is the first time in my life I've watch rugby for an extended period of time...and our American society worries about football players and concussions - those guys wear pads and helmets - the rugby players have nothing on for protection...well, my point was that our physical therapist said they now have wheelchair rugby and that it's like watching a demolition derby!!! - great, just the sport we'll be pushing KJ to play).  

So, that's the latest.  Look out Philly, the Carlson ladies will be taking to your streets in a few weeks, this time with no wheelchairs to slow them down.  BuTT, first we will be celebrating KJ's BUTT BIRTHDAY (that's the initial date of the surgery she had done in-utero as technically, her backside was exposed...we were told all of the spina bifida kiddos celebrate their butt birthdays) back here in Zeeland on August 31!!  

As always...CHOOSING JOY

-Jeff