Friday, October 17, 2014

October 13, 2014: Shaking the hand of the woman who shook the hand of Dr. Rett

Day 2 in Boston

Cammy was up early, as usual, so our day began early.  We went downstairs to breakfast, hoping to see Ricky.  Maria, the host, greeted us with big hugs.  She remembered us!  The omelet chef today was Albert, who was just as sweet as Ricky.  Andreas, the waiter, came to our table with big hugs “Hi Cammy!  We missed you.  Where’s your cousins and aunt?”  He remembered us!  Unfortunately Ricky has the day off, but we were promised that he would be there tomorrow. 

Cameron ate 3 pieces of French toast and some apple crisp.  Grandpa B could not get over how well we were treated.  He couldn’t believe how many people remembered us.  And he couldn’t get over the breakfast spread!  This staff has continued to be incredible to us.  Andreas brought us some coffees to go and a bag of snack for us. 

We headed outside to jump on the CT2.  Cammy loved riding the bus.  I’m not sure if it reminded her for Grandma C or going to school, but she had a huge smile on her face the entire ride. 

We got off at the hospital.  We were early so we went into to sneak a visit with Emma, another Illinois girl in the trial.  She was all smiles and her screening was going great.  We were so happy to see her.  We also went to the playground to leave Emma and Elena (yet another Illinois girl starting the trial.  There were 3 of us in Boston at the same time!).  When we got to the giant dry-erase board, we saw that our messages from the summer were still up!  It was so cool to see.  We added our message for our Illinois friends to find.  

Giving Natalie her Cammy Can shirt

On our way to the office on Autumn Street, we ran into Elena and her family.  We were very excited to see them.  Everything was going smoothly so far with them as well.  See little Elena gave me flashbacks of Cammy at 2.  Oh she’s so little and adorable. 

 At the Autumn St. office, we gave Grace and Heather big hugs.  They gave Cammy all her mail.  We couldn’t believe how much was waiting for her! Cammy got all hooked up for her autonomic testing.  This is her favorite of all the tests we do in Boston.  She must sit and watch Sesame Street for 2 hours without eating, drinking, going to the bathroom or falling asleep.  If she needs to do any of these things, the testing is paused.  But she’s made it straight through every time so far because Sesame Street is on.  Grandpa B made his way to Fenway for a tour during this time. 

About an hour into the testing, I had to give her a shot so they could see her reaction all hooked up.  It didn’t seem to phase her as usual.  She was able to give them 2 hours of data.  I was able to do the phone interview part with Grace while Cammy was watching her show.  


After Cammy was done, Kate came in.  We love whenever we get to visit and chat with Kate.  Cammy didn’t seem to want to hear everything we were talking about though as she crabbed and then fell asleep.

We made our way back to the hospital to meet Grandpa B.  We went to the Café for Kids to feed Cammy a snack.  We met up with another Rett family from MA.  Irene Gladstone and her daughter, Erica, had actually met Dr. Rett.  Erica is 35 years old.  It always makes me so happy to meet a woman with Rett who is older then me.  It inspires me.  We learned so much from Irene.  We had such a lovely time chatting with them.  Grandpa B could not get over that he “shook the hand of a woman who shook the hand of Dr. Rett.”  It is pretty cool to hear how Erica was diagnosed by Dr. Rett.  

Back at the hotel, Cammy was excited to finally go swimming.  She and Grandpa spent 45 minutes in the pool, all smiles.  She would live in the water if she could.  She is truly the happiest in the pool. 

We ordered Chinese food from Hong Kong in Harvard.  We are making this a Boston tradition since Cammy loves their fried rice.  We had our Mike’s cannolis.  Cammy liked the chocolate chip better than the peanut butter.  She kept smacking her lips for more.  It’s her favorite dessert.  Unfortunately for Billy, we couldn’t figure out a way to bring one back for him. 

It was early to bed for everyone after a long day.  I had to give Cammy her shot at 10:30, which she didn’t wake up during the injection again. 
Goodnight Boston. 

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