Chicago PART 3

Chicago was very cool at night.  The lights and energy were awesome. 

After the hospital, we went back to the hotel and freshened up and then headed out to do a bit more sight-seeing/shopping and dinner.  

We walked for several blocks down the mile and ended up in another mall next to the Hancock building.

The first store we saw was the American Girl Doll store.  I got three guys to go in that store with me.  It was pretty nifty and the whole time I was wishing that Abby could have been by my side.  She would have been in heaven.  I found cute, matching girl/doll, American girl Chicago shirts and a tote bag for all of her doll stuff.

Further into the mall we found this store.  All the buildings in the picture above were built out of legos.  Very impressive on closer inspection.  I was surprised that the Lego logo was not built out of legos.  It looked like a bunch of little uninflated balloons. 

However, I got up really close and saw they were legos...the heads of mini figures!  Awesome!

It was a very cool store.  They had a little play area where Ben made a new friend while I shopped. 

They had a place where you could build your own mini figures.  They also had a place with a bunch of computers and legos...I didn't know what it was for but I'm sure it was awesome.

Ben was quite enthralled with all the life size figures built out of legos.  He didn't want to leave Woody's side and finally had to give him a kiss before he was satisfied and could be dragged away.

We also went to a great store called Marbles the Brain Store.  They had some unique and fun games.  We ended up getting a game called Sherlock for Josh and a game called Trigger for the family.  Trigger is made by the same company that makes one of our favorite games, Spot It.

I was able to make it up to the top floor of the mall to the Pandora store.  Andy gave me a Pandora bracelet with one bead for Christmas (I had picked it out for him).  I thought it would be fun to add another one to it.  The guys waited outside of the store.  Ben was fascinated by the escalators so they were going to go for a few rides while I chose a bead.  A minute after entering the store Andy came in and said Ben was having one of his staring seizures.  He said to keep looking; he just wanted me to know.  I hurried and chose a bead called "The Magnificent Mile" (a lot of cities adopt a bead and give it a name associated with their city).

I went out to find Ben still quite out of it.  Andy said it had lasted about 7 minutes.  He started to come around while I held him.  We were all pretty hungry and so we went walking again and found some dinner here...

Apparently they are pretty famous for their Chicago style, deep dish pizza.  I was kind of shocked though when we were seated and I heard the waiter tell a group next to us that their pizzas would take 45 minutes to an hour to bake.  Oh boy!  I knew Ben couldn't hold out that long.  We got his dinner quickly and then took turns walking the restaurant with him while waiting for our own.

It was an interesting restaurant to study since every inch within arms reach (and often beyond) was covered in signatures/graffiti.

Check out the name right in the middle.

 

 

 

One of my favs!

The food was quite good when it came.  We all gulped it down so we could get Ben back to the hotel and happy.  He actually fell asleep in the hotel's crib after he stripped the sheets.  He ended up in bed with us as he always does sometime in the middle of the night.  He was zonked!  He slept through us getting ready and we had to awaken him so we wouldn't be late.

We got him ready and slipped downstairs and had a quick breakfast.  We grabbed our stuff and were headed to the airport.

We ended up having a good amount of time so we wandered around one of the world's busiest airports.  I had to buy some chocolate from the Rocky Mountain Chocolate Company...the Peanut Butter Bucket was my favorite, and I had to buy some popcorn from Garrett's for Ben...he loves popcorn!  (Because Ben is such a charmer he got free chocolate and free popcorn...lucky guy!)

Here are Ben and Grandpa Bryan at lunch before we loaded the airplane.

Pretty cute stuff!

 Well, the next part of our story is pretty long...so I will spare you the details.

  Let me just say that we loaded our plane, spent about 2 hours there, were unloaded, spent about 1/2 an hour back in the airport, loaded the plane again, spent about three more hours sitting and trying to entertain Ben, were unloaded again for about 15 minutes and then were loaded for the third time.  Finally, after 7 1/2 hours past our original take off time, we took off.  It was all due to weather, luggage problems, mechanical problems and such.  Boy, were we glad to finally get off the ground.  Within 3 minutes of taking off, Ben was asleep in my arms and slept until the last 30 minutes of the three hour flight.  Then he ate and drank some water so his ears were okay while we landed.  

He was amazing.  Even during the 7 1/2 hours on the tarmac he was happy for the most part.  I was so grateful!  It could have been my worst nightmare but he was a doll.  (It was also a blessing to have the extra space granted between  the last row of 1st class and our seats.)

We got home about midnight and found all snug and sound. 

What an incredible trip!  We were so blessed to have that opportunity and so blessed to have the support and love from our families and friends.  Now we will put into practice some of the things Dr. Laux suggested and hopefully see some improvement for Ben.

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.