Saturday, August 9, 2014

August 4, 2014: "Ryan, sit on the bed, eat your donut and watch TV"

We have officially been crammed in a hotel room long enough. We have been up for hours, trying to feed Cammy while Ryan is jumping on the bed. These words just came out of my mouth 'Ryan, sit on the bed, eat your donut and watch TV. I expect you to be a little smarter after watching this.". #MomOfTheYear #AreWeHomeYet #PassTheCoffee #TVandDonutsMakeYouSmarter

Coming into the office to more mail is an awesome way to start testing! Thank you! Mail all the way from Australia too!! Thank you everyone.  This has helped us more than we could explain. 

Cammy had more autonomic testing.  I think has been her favorite part of all of this. She gets to sit and watch Sesame Street for 90-120 minutes, uninterrupted. She had her skin fold taken and did a nail bed test. Billy and Ryan went to the playground and had McDonald's.  
Q sensors were put around Cammy's wrists for about 24 hours.  They track her hand movement as well as anxiety, stress and pain through the temperature of her skin.  We have to log anytime she falls asleep, eats, drinks, goes to the bathroom, washes her hands during these hours of wearing the sensors.  
After a quick morning at the office, we packed our bags so we would be all set as soon as the day at the hospital was done.  
We jumped on the Green Line to go to Union Oyster House for our "fancy family dinner" on our final evening in Boston. 

We definitely did not think about "America's Oldest Restaurant" being handicap accessible.  We did avoid the hour wait for a table once they saw Cammy, but we could only sit on the first floor, which is the bar area.  They made an exception and let us pick from the entire dinner menu rather than the first floor mini bar menu.  Thank goodness Cammy did not have to go to the bathroom while we were there because Ryan and I had to go up 3 flights of stairs for the tiny 2 mini stall bathrooms.  Cammy and Ryan devoured their spaghetti.  Billy enjoyed his swordfish and I loved my seafood pasta.  

Heather told us about Modern Pastry, so we made our way over there to see who had the better cannolis: Mike's or Modern Pastry.  The line was just has long for Modern Pastry.  Cammy voted that Mike's was the better cannoli!  

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