Monday, January 23, 2012

Chicago PART 2

Ben slept like an angel Wednesday night.  However, he woke up super grumpy.  I was hoping that by our appointment with Dr. Laux at 1:00 he would have reverted back to his usual little charming self.  
We took our time getting ready for the day and then walked down the street to a Corner Street Bakery for breakfast.  The guys had breakfast paninis and I ordered a yogurt/fruit parfait, a side of potatoes, hot chocolate, orange juice and a slice of cinnamon cream cake.  It was all pretty scrumptious!

One of the waiters took a liking to Ben and talked to him quite a bit.  He told him 'he was the future'.

After breakfast we had about an hour before we needed to leave for the hospital.  We decided to walk a bit down the Magnificent Mile and do some window shopping.  I had come prepared with a hat and mittens for Ben.  He wasn't too keen on keeping them on but he eventually got used to them.

We ended up inside of a mall because of the biting cold air outside.  

This is a fun store window that I saw.  Those are cakes on top of the bridesmaids' heads.

We went to a children's store called Kooky.  Almost immediately I saw a Cat in the Hat stuffed animal that I knew Ben would love.  I picked it up...saw the price tag...and put it back down.  A little steep for my taste.  Ben had seen it though and apparently, as Andy was strolling him around the store, he kept signing "cat".  I couldn't resist.  He loves his Cat in the Hat and held on to it pretty tightly for the first little while.  

We then headed back to the hotel and hopped into a cab.  By the way, "hopping in" includes folding up the stroller and putting it in the back, Andy buckling in the car seat and then buckling Ben into said seat and then buckling ourselves in.  We did get pretty efficient with the process though and could do it in probably less than three minutes.  Our cab driver to the hospital was the most reckless we had experienced to that point.  He also was a honker and would honk at anyone for any reason.  His method of driving was similar to what I am told is my own method; pushing the gas pedal down and then taking my foot off and then pushing it down again when I need to pick up speed and then releasing it completely again when I reach my desired speed.  After the ride I asked Andy to assure me that I wasn't as bad as this guy.  He said I wasn't.  Let's hope he wasn't just trying to make me feel better.  When we pulled into the hospital entrance area, the cab driver rolled down his window and told a lady trying to parallel park that she needed more training.  He was a character.

Once inside, we were directed where to go.  We reached the third floor and found the epilepsy area.  There was no waiting room or anything.  Just an office where I stepped in and filled out a little paperwork while the guys waited in the hall.  After a minute, the nurse took us into Dr. Laux's office. She got some measurements on Ben and then soon thereafter, the doctor came in.  We had arrived quite early for the appointment and so we were thrilled that she came in as soon as she did.  We spent three solid hours with her.  She was great!  I liked her a lot.  Not only was she sharp and knowledgeable but also very kind and friendly. 
After about two hours of trying to entertain Ben in the office, he finally fell asleep on my lap and we were able to continue the conversation with no distractions.
She said Ben seems like a pretty typical case of Dravet.  The only thing that doesn't really jive is his problematic pregnancy and problems at birth.  
We now have a game plan and list of things to try in order of what will hopefully work the best to the least.  She wants us to give the ketogenic diet a try.  This seems to be especially helpful for the myoclonic jerks that keep throwing him to the ground.  If that doesn't seem to help, she wants us to try Clobazam again and if needed add Stiripentol on top of it.  This combination also seems to be most helpful for the jerks.  There were a couple of other things she listed but they were a lot less likely to be helpful to Ben.
She also had some suggestions for therapy such as speech therapy more often than he is currently receiving and also physical therapy if and when we get his myoclonic seizures under control.  She said he might grow out of the awkward gait he has right now but then later, around the teen years, many develop a crouched gait.  Therefore, it would be helpful to do some PT to strengthen his core muscles and balance.  It would be kind of fruitless right now though since he would constantly be falling down.  Dr. Laux also said it wouldn't be a bad idea to have some oxygen for Ben at home.  Obviously, in three hours we talked about a lot more than that but those are the things that stand out.
sorry...bad picture quality, but Thank You Dr. Laux!

There was this awesome ball thing in the lobby downstairs that Ben and I stared at forever while the guys arranged a taxi and did other odds and ends. 

In particular, there was a bobbing turtle that had an open mouth.  The balls would fall into it and the turtle would tip and send them on their way in another direction.  Ben started mimicking the turtle by putting his open palm under his mouth and doing an eating motion and sound.  It was adorable.  He screamed when I had to pull him away to get in the cab.

As a side note, this summer, the hospital will have a brand new building located downtown.  This will be nice for possible future visits to Chicago.

1 comment:

  1. What an adventure. And the best (or really worst) is yet to come!
    BTW, that breakfast sounds too good to be true. Good thing we can't get that every morning! : )