Cammy Can Reverse Rett: July 23-24, 2014: I think I'll go to Boston, I'll think I need a new town

Since the only way I know how to make a theme song for a post is to add a Youtube video clip, please play the clip while reading.

I've had the song Boston by Augustana stuck in my head for the past month thinking about this journey.

You don't know me, and you don't wear my chain.

She said I think I'll go to Boston I think I'll start a new life.

We picked Kim and the Twinks (Carly and Sydney) up at 5:30 and set off for Rochester, NY. Our navigation showed the drive would be 10 hours, so I planned for 12. Getting Cammy in and out of the car to eat and for potty breaks can take a while. The girls did a fabulous job in the car. I don't know how parents did it before iPads and DVD players! Well, I do know. We all played cards and the License Plate game and Papa Joe rigged up a box tv in the big blue van where all 8 of us somehow made it to Florida from Chicago.

Shockingly, we only stopped 4 times before our night's destination. Cammy slept through the first stop, where I desperately needed coffee. We somehow (by "somehow" I mean "a gabby set of sister got distracted") forgot to fill up on gas, so we had to stop 1.5 hours later to fill up. Cammy indicated that she didn't have to go potty on the 2nd stop, so that was a semi-quick stop. One of the twins sat next to Cammy and fed her, which saved us a lot of time. The rest of us were able to eat in the car too. We took her out on the 3rd stop, which requires us to pull out any bags and cooler.

As a side note, I wanted to mention that Cammy does go on the potty. She is pretty much on a schedule, but that's been off this summer. She still wears a diaper, but she will be successful on the potty about 3 times a day. She understands that this is a "big girl" thing. She knows all her friends and her sister goes on the potty, so she has great pride in herself using it as well. We are very proud of her as well. For her and us, going on the potty is part of her dignity. She gets very upset if someone hasn't picked up on it that she has to go and she will hold it in the car or where ever until you get her on the potty.
Every time I take her into a public bathroom though, I wonder if I'm striping her of her dignity as I lay her on the bathroom floor to put her clothes back on. Yuck. Ugh. I made a note to bring some of the "chucks" pads with us next time to bring into bathrooms.

Ryan was bummed out that I left her map puzzle at home, so we picked up a map with the License Plate game on the back. She was thrilled to keep track of the states we were going through.

By the 4th stop, we had our routine down to get the Twinks out as quickly as possible. The girls enjoyed a McDonald's smoothie to tie them over. We arrived at Uncle Frank and Aunt Jane's house around 5:45, so with the time change, we made very good timing. As soon as we brought in our overnight bags, everyone but Cam and I were out the door for their cousin's play, Cinderella.
Cammy was most excited to get out of her chair and stretch. I stretched her for a good 30 minutes on the floor before dinner. She gobbled down Mac N Cheese while I was so grateful my aunt had a delicious salad waiting for me. We jumped into bed and were both out by 8:00!

Thursday, July 24, 2014

The girls loved playing in Aunt Jane and Uncle Frank's house. Aunt Jane's workspace is a sewer's dream! My mother-in-law and Aunt Jane could really start a business in that attic working together! And Uncle Frank's workspace is an inventor's dream. My father-in-law would have loved his gadgets. Between the two of them, anything you want, they could create it. I want to go back for a 2 week long sewing and carpentry workshop!
We were so grateful to have this layover.

Parrot driving a truck

About seven hours later, we arrived in Boston!!!! First things first: check in, get extra bed and refrigerator (all extra microwaves were already taken), drop off bags, order Chinese food, get to the pool!

There are a few things that immediate cheer Cammy up in any situation: Sesame Street and swimming. As soon as we put her swimsuit on, she was all smiles. It was good to get her loosened up in the water.

Ready to make a splash in Boston

Cammy was so happy to be out of the car and in a pool.

Carly, Sydney and Ryan enjoyed their Chinese food picnic in our jammed packed room and Cammy loved having someone else feed her other than me. She could not get enough of the chicken fried rice She had 2 cups of it.

Chinese food picnic

Cammy LOVED the chicken fried rice

It was already way past my girls' bedtime, but I wanted them to journal for a bit. I bought each girl a journal for our journey. The Twinks will write my girl's thoughts.

Time to journal

Carly worked with Ryan on her journal.

We did not bring Cammy's Tobii for a couple reason.
#1) We don't have it. We sent it back for repairs.
#2) It weighs the same as Cameron. It's big, bulky and not easy to travel with.
#3) Cameron's school made her a PODD book, which we received this summer. We will use this as her traveling communication.

Cameron is pretty good at using the Tobii to communicate. She always uses her eyes very well to answer yes/no or choose between a couple options held up to her. We are starting to work with her using a PODD book too. Technology is always breaking down, we want something that we can pull out any time. We know Cameron is smart enough to learn another form of communication. We want her to have as many tools in her communication toolbox as possible. As wonderful as the Tobii is, it is not portable, it breaks down all the time and people do not know how to use it or program it.
There are about 60 pages in this PODD book. On the first page, I scan down, pointing and reading the squares. If Cameron keeps looking at the book or looks away from me, that is a "no" and I continue to scan. If Cameron looks at me, then she wants that square. There are page #s within several squares which indicate to flip to that page to continue with the sentence Cameron is forming.
Cameron was exhausted, but she did share a few thoughts about her day. We are so proud of her.