Saturday, August 2, 2014

July 26, 27, 2014: Weekend in Boston

Saturday, July 26 

We made friends with front desk who gave us 2 adult complimentary breakfasts every day we are here.  So, since Cammy is up so early, I try to get her out of the room to let the others' sleep.  We hung out in the lobby watching Sesame Street until the dining room opened at 6:30.  
We were treated so well when we walked up.  They sat us near an outlet so Cammy could watch her Sesame Street while I fed her and had my own breakfast  We were the only ones in there at the time, so the wait staff and chef came around to us to introduce themselves, so of course I took that opportunity to tell them about Cammy, Rett syndrome and the IGF-1 clinical trial we were about the participate in.  They all immediately fell in love with Cammy.  All of a sudden personalized Mickey Mouse pancakes arrived at our table for her. She was happy as can be.

After a lazy morning, we headed out for the Franklin zoo. Auntie Kim made sure the girls saw every single animal and exhibit there was offered. Unfortunately, Cammy slept most of the time.  She slept for a couple reasons... it was pretty hot outside (she has issues with temperature regulations) and she was up since 5am.  If it is hot outside, Cammy needs to be well hydrated and shaded.  Her body gets all out of sorts and she falls asleep.  Temperature regulation is a big issues with girls with Rett syndrome.  
Near the end, they discovered the biggest playground we had every seen and it was handicap accessible!  Cammy woke up for this part and smiled the entire time in the playground.  She loved going down the slides with Carly.  Cammy knocked an item off her her 2014 Bucket List: Go to a zoo in another state!

We left the zoo around 4 to pick up Chinese food at Hong Kong and drop Kim and the Twins off for more exploring.  By the time Ryan, Cammy and I got back to the hotel, ate dinner, had baths, got in our pajamas, it was already 7:30.  

Sunday, July 27
Ryan went on an adventure with Kim and the Twinks for tea, on a train ride and closed down the children's museum.  Cammy and I tried to catch up on some sleep.  She took a nap right after breakfast and immediately after lunch.  I knew she was exhausted because she rarely takes one nap, let alone two!  We went swimming, had dinner and called it a night.  
Ryan and the girls didn't come back until 7pm.  She was beat.  Ryan told me all about tea, how the street performers, her new kazoo and her train ride. 

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