Sunday, December 21, 2014

Dec 17, 2014: EEG & 2nd Autonomic Testing

We had another early day on Autumn Street.  Patrick, our sweet 70+ year old hotel shuttle driver took us over at 7:15.  It was drizzling out.  He said he went to the front desk to get an umbrella because Cammy "was like sugar and she was going to melt."  :)  It makes him so happy to drive Cammy to her tests.  It makes him even happier that she falls asleep on every drive.

Cammy started with an EEG at 8am.  Morgan and Franny got her all hooked up with heart monitors, Q sensors and the brain cap.


She was able to bring in a movie, so of course she choose Sesame Street.  They had to go through routine tests on the eye gaze screen before showing Sesame Street.  They had to calibrate her eyes.  So they showed a cat jumping around and she had to look at it with her eyes.  She was not thrilled about this part.  Then, she had to look at a series of checkerboards.  She had to look at it for a length of time before it switched to another checkerboard and then another, etc.  We were told it takes up to an hour for some kids to do this because it is so boring.  I told Franny to go in the other room and tell Cammy that the quicker she looks at the screen, the faster Sesame Street will come on.  BOOM!  Here eyes were glued to the screen and she flew through the checkerboards. 

We were able to watch from the control room.  Cammy smiled so big as soon as Sesame Street came on.  Every time a funny part came on, she giggled and would turn to Morgan as if to say "Get it?  You can saw, right?!" 

Dr Nelson came in halfway to meet us. He was very down to earth, funny, friendly and spoke in layman's terms.  He asked what Cammy was watching that she was so happy.  he scrolled through her EEG and said it looked good.  That gave me relief.  Cammy's doesn't have seizures (knock on wood) and we are hoping that stays that way! 

Cammy finished 30 minutes early, so she was thrilled that she had time for a drink and snack before the next autonomic testing.

Dr Nelson and Cammy

Franny, Morgan, Cammy and I

We went down to the testing room, put on more Sesame Street and settled in for 2 hours.  At 11:30, I had to administer Cammy's injection so they could record her reaction.  When Grace called time and took of all her sensors, Cammy gave the biggest smile.  Even though it doesn't seem rigorous, all of this does wear Cammy out.  It wears me out!

Patrick picked us back up and Cammy fell asleep on the way back. 

After lunch, we decorated our room with more Christmas decorations people sent to Cammy.  Our room looks so cool!  We were wondering if we left the window clings up after we left, how long after we left before someone would notice.  

I received a call from the kitchen.  It was Ricky!  He said he was worried he missed us since he hadn't seen us yet.  I assured him we were here for another week.  We had early appointments the past two days so we couldn't make it to breakfast.  He told us he was sending up some goodies.  We cannot wait to see him tomorrow!

Grandpa B. gave Cammy a few pep talks, final snuggles and kisses before he said goodbye.  His leg of the trip is over.  It's just me and Camster until Billy come Friday night. 

First leg of the trip team

This evening, an awesome Rett family (their PT is totally part of this family) came over to have pizza with us. We had such a wonderful time with them. I met Krissy (Haylei's PT) in 2012 at the Rett conference while we were both running on treadmills training for marathons. We hit it off and kept in touch. It felt like meeting up with an old friend again. Thank you Kathleen, Haylei, Auntie Johanne and Krissy for a fun evening!

Cammy and Krissy finally meeting. 
Haylei and Cammy
Cammy, Kathleen, Haylei, me and Krissy
We are looking forward to breakfast with some of our favorite Hyatt staff members, Ricky and Andreas, tomorrow. Executive chef Robert told me this evening that they will have Mickey Mouse pancakes ready for Cammy.

We cannot say enough amazing things about the Hyatt staff here. They are taking care of us like we are family. 

Cammy fell asleep thinking about Rett syndrome this evening.

Goodnight Boston.

To join Cammy Can's Crusade against Rett, you can register for our March 21 fundraiser or make a donation at 

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