Cammy Can Reverse Rett: July 2014

We arrived at the hospital at 7:45am in our team uniforms. We received smiles from everyone we passed and several compliments on the shirts.

Kim took the girls for breakfast in the kid's cafe in the hospital and then off exploring the grounds. Cammy and I began at 8am in a room with Natalie (who grew up in Palatine) reading us the consent form. This long form had been sent to us and we read it. However, it's part of the study procedure to have it read to us so we could sign off on it. That took 30 minutes. Cammy had her head phones in, smiling watching Sesame Street.

The next part was vitals and measurements. The nurse asked if I wanted to give Cammy a numbing cream for the shots, which would take 20 minutes to activate. I asked Cammy, who was looking to the side trying to see the ipad, if she wanted a cream so they shots wouldn't hurt. As the words were coming out of my mouth I realized how dumb that question sounded and her response confirmed my thought. She quickly turned her head and glared at me as if to say "Yes, you idiot!" Cameron was very cooperative and pleasant during all the measurements and vitals. Then, came the shots. I knew this was not going to be easy. Cammy is a very tough stick.

They got what they needed for Friday's visit from her right arm, but I told them that since they were at it, they might as well get whatever they needed for Monday's visit so Cammy didn't have to fast or go through this again. They poked and poked. Cammy screamed and cried. Cammy does not shed actual tears often, I've seen it less than 10 times in the past 3 years. So when I see the tears, it hurts me even more. They took 2.5 tablespoons total. It seemed like a lot more than that seeing all those vials.

Cammy was all flushed after that. Her demeanor turned around once she saw the peanut butter and jelly sandwich and apple juice the nurse brought in. She ate it faster than I've ever seen her eat before.

They then took a urine sample.

On our way back from the bathroom, we bumped into a Canadian family just finishing their 3rd checkpoint. It was nice to meet a new Rett family.

Dr. Tarquinio was ready for us in the room. He did the physician exam. I had to answer more questions as he checked Cammy out. He relieve a couple worries I had too. I have been worried that Cammy's tonsils are enlarged, but he said they were not. Another concern of mine was that Cammy was starting puberty early (like now). After checking a few things, he assured me that she was not.

We were then sent for the bone age xray and spine xray. As we laid Cammy on the xray table for her hand xray, she fell asleep. I had a huge apron on, leaning over her on the table, looking like Dexter! I knew her being weak and asleep at 1:20 was going to be a problem for the spine xray, which has been my biggest concern about Cammy getting into the study. Nothing was going in our favor at this moment, as the chair she was supposed to sit in was too big for her and slippery and she was asleep! So, Kim and I did our best to press her against the wall, keep her straight, push her shoulders back and push her head back as best as we could.

1:30. That's a wrap!

Screening in the books.

#ThreeSetsOfSisters

When we left Boston Children's Hospital, we headed over to the study team's office to pick up a "large package" that was sent to Cammy. We never expected a box this big!!!!

Thank you Sarah Marshall for this incredible thoughtful gift. Cammy smiled so big when we pointed to the doll that was her and Ryan are so excited that she was a doll too! Once we got back to the hotel room, we replaced one of the photos on the wall so this could hang. It's making our room a little more like home. Thank you.

Here are some photos of what Kim, Ryan, Carly and Sydney did during the day. One goal they had in mind was to take photos in front of each Dunkin Donuts they came across and text it to Grandma Corrado.

Ryan loved playing on the computer in the hospital.

The girls had a blast in the hospital park.

This is my favorite photo. Catch that kid!!!

Ryan finally crashed for after the long day... on a bag of Cheetos

Before bed, it was journal time. Sydney worked with Ryan this time and Carly worked with Cammy. I used the PODD book to help Cammy get her thoughts out. She was spot on about her day. She knew where they poked her for blood and said how she felt during that time. The part of this evening's journalling that really got me was that she wanted to know how Carly's day was. In all of our day to day chaos, trying to figure out what Cammy wants and needs, I always forget that she also wants to have a conversation and ask other people questions. She wants to know how they are doing. Cammy sincerely wanted to know how Carly felt about her day. She looked at Carly when she spoke and really listened.

Cammy's journal entry.

GOOD NIGHT BOSTON.

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.