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