Wednesday, July 24, 2013

Indianapolis Follow Up

Ben had an appointment with his stroke specialist, Dr. Golomb, in Indianapolis on Monday.  It went GREAT!

We left Sunday morning EARLY.  Like, 4am early.  This was all Jeremy's idea and he thought it would be good to leave at that time and hope that Ben and Ainsley would sleep a good part of the ride.  And they did!  We picked up my mom (who was courageous and kind enough to volunteer to come along and help entertain the kiddos) in Newton on our way and they slept until almost did my mom and I!  We stopped for breakfast at changed the kids in the back of the van.  We did this a lot as I find most public restrooms pretty gross.  It's not weird to change your kid in a parking lot in the back of a van, right? 

We mostly ate lots of snacks and Ben and Ainsley really enjoyed watching Sesame Street in the van.  My Grandma Betty was kind enough to let us borrow her van for this exact reason.  I didn't really want to buy dvd players not knowing if the kids would really watch them or not since they aren't really into watching tv yet.  But they loved it and were completely enthralled.  Total success!  Another key component to our successful road trip was chopped up twizzlers.  These kids are twizzler maniacs!  We found this out on our road trip to Minneapolis a couple weeks ago and I had to keep breaking off pieces for them so we pre-cut a whole bag and they ate close to the whole thing...well, Jeremy and Mom and I helped.  Ben was absolutely killing me with his "More, Pwease!" And he gets his little hand going and signs "please" at the same time.  No possible way I could say no to that.

So we got into Indianapolis around 3pm and checked into our hotel.  It was promptly destroyed like a rock band was staying there. 

We rested for a bit and cleaned up then headed to downtown Indy to check out the Cultural Trail.  It was so awesome!  We walked all over and the have a huge canal in Indianapolis which I had no idea about.  There were lots of fountains and Ben went crazy over the fountains. 

We got up Monday morning and had Ben's appointment.  As I mentioned, it went great!  First of all, we don't have to go back until next March!  We have learned through blood work that Ben and I both have a gene mutation that makes our blood more likely to clot.  We knew Ben had it first and I just got my results a week or so ago (from having THIRTEEN vials of blood drawn).  This is *part* of the cause of his stroke.  Dr. Golomb calls it a "perfect storm."  Several things added together (being a boy, being a first born, being a twin) in addition to having the gene mutation, combined to cause a clot that cut off the supply of blood in his middle cerebral artery on the right side of his brain sometime around the time of birth. 

The mutation itself isn't a huge deal.  Dr. Golomb thinks it's an adaptive or evolutionary type mutation so that if you get bit by a bear or in a car wreck you won't bleed out.  She does recommend that I see a high risk OB before (*if*) we try to get pregnant again to discuss how to minimize risk and she suggested I see a hematologist. 

She was very pleased with his development socially and cognitively.  This was probably the best part of our appointment.  She talked about how Ben might be labeled as "delayed" because of his gross motor issues related to his cerebral palsy.  He can't walk at 21 months but he followed 3 commands in Dr. Golomb's room which falls in the 2-3 year old category.  She said she feels he is cognitively where he should be or even "cognitively advanced."  Now I'm not a parent who feels it necessary to brag about their kids or how smart they were.  I grew up in a house where good grades were expected, not rewarded.  My mom didn't rant and rave about how great it was that I got straight A's or got into pharmacy school or graduated with honors.  I should also mention how I'm not athletically inclined.  At all.  Jeremy possesses these same traits.  Smart, not playing any collegiate sports, much less professional.  So all this is to say that Jeremy and I don't care if our kids can't play professional sports.  That's just not what we personally value (though it's fine that others do).  It was, however, terrifying when there were so many unanswered questions about what Ben would be capable of after the stroke and especially after the infantile spasms.  Let me stress how amazing blessed we are that Ben is where he is.  Infantile spasms VERY often cause cognitive impairment.  My mom always says it's a good thing he was a genius to start with so losing a few IQ points won't make any difference.  I think being a grandma makes one more boastful ;)

So after our great news we headed home!  We stopped in Springfield to see Lincoln's house and the capitol.

1 comment:

  1. Great News!!!! I also find myself changing my son in the back of our car!