Tuesday, May 14, 2013

Our Trip to IU

Sunday we traveled to Indianapolis to see a Pediatric Stroke Specialist - Dr. Golomb - for an appointment on Monday morning.

The Trip - It was stressful.  I'm not gonna lie.  We left by 10am Sunday - actually 9:58am and the goal was 10am - I was feeling pretty awesome about that.  We drove to Kansas City for our flight because it was HALF the price of flying from Des Moines.  We chose to fly instead of drive the 8 hour (before stops) trip.  Possibly the worst idea ever.  So, we drove 3 hours to Kansas City and were an hour late getting to the airport.  Hello, panic attack.  We got in the wrong line.  KC does it a little different and you get in line for security at your airlines gate basically.  We got in the Delta line but turns out it was the Delta Security Line, not the Delta Check Your Bags and Print Your Boarding Passes Line.  We got out of line, checked the bag, printed boarding passes and got back in the Delta Security Line.  We got through security, which is a feat in-and-of itself with a 19 month old who has a diaper bag, a car seat, and a stroller, in addition to our carry-ons and my purse.  We arrived at our gate and boarded within 10 minutes.  Not much time to spare - definitely not how I like things.  My motto is "If you're not early, you're late."  Ben thought the take-offs were hilarious and had a couple outbursts on the first flight - I think just pain from his ears.  We really couldn't have asked for more from him.  Then we had a layover in Minneapolis/St. Paul.  That was nice to have a little down time and let Ben scoot around for awhile.  We gave him diphenhydramine (Benadryl) shortly before we boarded our second flight and he slept the whole way.  Thank you, Jesus...and Benadryl.  We arrived in Indianapolis around 10pm and got our rental car and drove to our hotel (about 30 minutes away).  It was a LONG day.

We took selfies while we were waiting for our flight out of 
Minneapolis/St. Paul and I even got some great kisses.

Indian War Call

We realized once we got to the hotel that we forgot the cell phone charger in the car at K.C. airport.  I have officially become my mother and woke up at 6am worrying about this and unable to go back to sleep.  I got up and went to Meijer (or is it Meijer's?) in my pajamas...which had Peanut Butter Ritz Bits mush all over them from Ben the night before.  And I didn't brush my teeth.  Luckily there weren't too many people there and the ones who were didn't seem to care.  P.S. -  I much prefer this place over Wal-Mart.  It's like a mix of Wal-Mart and Target and T.J. Maxx.  We need these in Iowa.

Our appointment wasn't until 10am so we had plenty of time to hit up Cracker Barrel for breakfast and drive through town, including a Now-We-Can-Say-We've-Been-Here trip by Butler University.

The Appointment - It went well!  Dr. Golomb was very pleased with Ben's development, especially in spite of his Infantile Spasms diagnosis.  I can't convey how serious Infantile Spasms can be.  If untreated they WILL cause mental retardation.  While Ben is developmentally delayed, my mommy instincts tell me he'll achieve whatever he wants in life, though it will undoubtedly be harder for him than most other people.  She again reassured us that he will walk, citing the statistic that kids who sit up independently by 17 months of age will be able to walk.  It's so easy to forget how devastating this stroke COULD have been.  He could never walk, or communicate.  He might not have sat up on his own until now...or even later.  We are so thankful it's not worse.

So, back to the appointment.  We don't really know anything new yet.  They took 8 vials of blood to test for all kinds of stuff I don't even know about.  A little background: Ben had a right sided, middle cerebral stroke. When they did his MRI they also found a blockage in his left carotid artery.  Because of the two abnormalities, Dr. Golomb is guessing he has some sort of genetic-type mutation that caused the blockages.  She isn't immediately worried about any future events.  She described Ben's stroke as a "perfect storm" of events.  He has/had several risk factors.  1. He's a boy and for every 100 girls that have perinatal strokes, around 170 boys have them.  2. He's a twin, also increases his risk.  3. He's a first born, also increases risk.  4. Around the time of birth, mothers and babies clot faster.  This is true for everyone and is a survival mechanism so we don't all bleed out and die during child birth.  We'll see what comes back from his blood tests to find out what other risks factors he has.

She wants to see him again in two months so we are scheduled for an appointment July 22nd - our 7 year wedding anniversary.

Back Home - It was an equally long trip back home with a brief layover in Detroit and my stomach not feeling well for the entire drive back to Iowa.

    Showing off his bandages from his blood draws - he did great and had an awesome phlebotomist.

Thank you all for your prayers and sweet comments and well-wishes.  We truly appreciate each and every one of them!



  1. So glad you guys got encouraging news! Like most parents, you believe the best for Ben, and that goes a long way toward helping him overcome his obstacles. Praying for you guys!

  2. I just can't imagine you running to the store in your jammies without brushing your teeth. Oh the things motherhood brings us to do! You were never going to see any of those people again anyway.

  3. Reanna- This is awesome! Getting ready to take Linus on his first trip soon. Any tips?

    Best wishes always-
    Jeanine :-)