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? Best.show.ever!" 

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 http://www.rettsyndrome.org/special-events/cammy 

Dec 16, 2014: Mullen Scales of Learning

We thought Cammy might have a great academic testing day since it was the birthday of two of her wicked smart aunts and uncles.  

Watching Cammy take the Mullen Scales of Learning test was the coolest experience of this study. We are so lucky to have trained professional who know how girls with Rett communicate who are able to adapt this test and read their eyes. Cammy's eyes are laser fast. Even I was astonished and realized how much I am missing day to day. Franny had to  ask her to repeat her answer a couple times b/c her eyes were so fast. Cammy has been working on look at her answer then look at the person to confirm. 

Cammy showed her sassy side, rolling her eyes at Franny with the question she thought were too easy, as if she was insulted to even be asked those questions. She got frustrated if she was asked to repeat her answer because her eyes were too quick. 

I was completely blown away by how much Cammy was able to express that she knows when she has the right people asking the questions. She showed she knew letters, shapes, terms like first/last. Three hours is allotted for this test because our girls can fatigue easy, need breaks, drinks, bathroom breaks. I was on the other side of the partition. Cammy said "Mom" a couple times when she wanted a drink or a bathroom break. My heart filled with such joy. "mama" is one word she has held on to. I know it hurts Billy that she cannot say "dad" any more, but all mothers know, we need to hear that more. Cammy was SO chatty during this session, vocalizing sounds and letters I hadn't heard before. When Franny asked when the "M" was, Cammy repeating "mom." When Franny asked which boy was first, Cammy made a "B" sound.  She sounded like she did say "boy."  I think she was showing off. 

My absolute favorite part was when I went to hear after she called my name. Part of the test asked the child to follow 2 commands, then 3 commands. It's VERY difficult to think of commands for her to follow. With Ryan, I could say "Go to the clock, read the time, come back to me" and she would do it so quickly. With Cammy, I had to ask her to look at objects in a certain order. For 2 commands, I said "If you are thirty, look at the bottle, then look at me." Boom Boom. Done! Now the tricky 3 commands, which I've been asked over phone interviews is she could do, but never had concrete evidence. I asked her to look at a photo that Franny was holding, then look at her milk, then look at me." Boom Boom Boom. I cheered so loudly when she did it.

Cammy was thrilled when she completed the test early.  The team gave us some cookie from their cookie exchange.  They also gave Cammy and Ryan each a "Neuroscientist in training" tshirt. 

Patrick picked us up. As usual, she fell asleep during the car ride home. 

We headed back to the hotel, ate lunch and decorated the room with even more fun Christmas decoration that were sent to us. 

 

As we were heading out to our cozy little spot on the 3rd floor to our take out Hong Kong chinese food, there was a knock at our door.  It was our good friend A. Di Baglioni!   He brought another amazing tray of goodies for us. He wanted to visit again before he left for his break. 

 

Cammy liked the cozy spot with a fireplace and Christmas trees.  She devoured her chicken friend rice.  She kept smacking her lips for more Hersey Kisses for dessert.

Goodnight Boston.

To join Cammy Can's Crusade against Rett, you can register for our March 21 fundraiser or make a donation at http://www.rettsyndrome.org/special-events/cammy 

December 15, 2014: It's okay to be a glow stick. Sometimes we need to break before we shine.

It's pretty hard to sleep in the same room as Cammy.  Between all the noises she makes settling in to fall asleep, waking up at midnight to a giggle fit that turned into moaning and groaning until 1, then waking up for good at 4:30, my pure exhaustion, sleep aid and ear plug couldn't drown out all of that in addition to extra snoring and the water in the bathroom sounding like it was running every 2 minutes. I was ready for an IV of coffee today!  

Cammy and I went down for breakfast around 7.  Since the Hyatt is pretty dead this time of year, many employees are not working, so things like the breakfast buffet which has all our favorite staff members isn't up and running.  We had been so spoiled that ordering off a menu and not having her pancakes come out as Mickey Mouse was a bit of a bummer.  But some of our friends came to say hi and give us big hugs like Ivan, the manager and Robert, the executive chef.  We were told Ricky would be in tomorrow.  We are so excited to see him!

Cammy and I went for a quick swim after breakfast so I could stretch her out and she could wake up.  Swimming is totally her thing.  She gets so happy in the water.  I think she loves how free she feels.  We have a neck ring from http://www.waterwaybabies.com (No, I don't work for them.  I just pass along great product recommendations when I love something). that enables her to float in the water without me holding on to her.  She gets a huge proud smile on her face every time I let go and put my hands above my head so she knows I'm not holding on.  

After swimming, we changed, jumped on the CT2 bus and made our way to the office on Autumn street.  Cammy naturally fell asleep on the bus while I was insanely jealous that she could get a 45 minute nap in.  

There was another girl finishing up her autonomic testing, so our 11am time got pushed back a bit.  But that meant we were able to chat with Kate, Natalie and Grace more.  Cammy was pretty grumpy that she was woken up.  She wants to wake up on her own terms.  It takes her a while to snap out of that grumpy mood.  

Gianna had finished her testing, so we were able to say hi to her.  We met her briefly during our summer visit.  She is 1 week ahead of us in the study.  Cammy was not in the mood to socialize or take photos.  She wanted one thing and one things only: to watch 2 hours of uninterrupted Sesame Street like she was promised.  

Natalie hooked sensors hooked up to Cammy's chest and Q sensors on her wrists for her first autonomic testing of this trip.  Cammy has . She has to sit & watch Sesame St for 2 hours (her idea of heaven) without eating, drinking, sleeping. They are tracking her respiratory (girls with Rett have breathing issues like hyperventilating, breath holding & blowing. We have not observed any breathing issues with Cammy), stress responses (Cammy has a high tolerance to pain), and the Q sensors track her hand movement.

  

Cammy's mood dramatically changed once her Sesame Street came on. That grin stayed on her face for the next 2 hours, even when I had to give her her shot midway.

The team put all Cammy's mail into a new box they made during one of their "crafternoons" (I know, I can't get enough of that name either).  

Kate came in near the end with another bundle of mail that arrived today for Cammy.  We cannot thank you enough for all the incredible notes of encouragement, hope and faith.  We read each and every one.   There were so many quotes that made me cry, beautiful drawings from children, and adorable gifts.  We will decorate the hotel room with the beautiful drawings.  

My new favorite quote.  Thank you Auntie Mo

After we finished around 2, we stopped for a late lunch at the hospital.  We jumped on the CT2 back to our hotel.  Grandpa B took Cammy swimming again so I could do my part of study.  I have to speak with Kate via phone answering an hour's worth of questions about Cammy.

We ordered Chinese food and did Facetime with Ryan.  I miss that little face and voice so much.  She's had an awesome time baking and going to White Castle with grandma.  

 We opened and read a few letters to Cammy.  She couldn't believe she got a pair of slippers from 2 different people.  She was thrilled when I told her that she didn't have to share either with Ryan.  I was so taken back that there were letters and presents for Ryan in these packages and notes of encouragement to Billy and I too.  Thank you all for being so thoughtful of our family.  

We have an early morning at the office tomorrow.  At 8am Cammy has the Mullen Scales of Learning test.  

Goodnight Boston.  

To join Cammy Can's Crusade against Rett, you can register for our March 21 fundraiser or make a donation at http://www.rettsyndrome.org/special-events/cammy 

December 14, 2014 - Back to Boston

The past 3 weeks have been a blur.  We hosted over 45 people for Thanksgiving, Cammy had pneumonia, I had to get all my Christmas shopping done, which includes 15+ of Cammy's crew (teachers, aides, therapists, bus drivers), pack for us 3 girls, write notes about Ryan's schedule for aunts and grandparents, wrap a tiny gift for Ryan each day we are gone, mentally prepare to be away from Ryan for 1o days and in Boston with Cammy for this IGF-1 study, go to holiday parties with my parents this weekend, meet Santa, and we went to the Bocelli concert last night.  

I'm always on high stress level on travel days.  The trek through Midway was not as easy and smooth as our first experience traveling with Cammy.  No one beyond the desk where we checked out baggage was helpful.  Five able-bodied people where ahead of us in the wheelchair and stroller ID check, feeling no shame when they turned around to see 5 people in wheelchairs behind them.  Not one worker helped us through the lines or expedited the process.  It's the mere fact that Cammy cannot be waiting in long crowded lines, no one with a disability should.  At security, we waited again in a regular long, crowded line.  We actually had several people pass us because we had to wait even longer for someone to watch Cammy go through the metal detector in her wheelchair properly swab Cammy's wheelchair.  

Then, after we established a first spot in the priority check in on the plane, at the time we were supposed to board, there was an announcement that the plane had mechanical issues.  So, everyone sprinted from B20 to B3.  Nothing about this trip through the airport was relaxing.  It was a 180 from our October experience  at Midway.  When we finally got on the plane, the flight attendants on Southwest were sweet and extremely helpful.  

Arriving at the Hyatt Cambridge, we walked in to Christmas decorations and a cheerful staff.  I finally felt a sense of relief as I was walking into our home away from home.  We checked in, met some people we hadn't met on our prior stays.  We unpacked some of our stuff.  We were just about to head downstairs to their restaurant for dinner when I received a call in our room from the kitchen, telling us they were sending up an "amenity."  

******TISSUE ALERT******

We opened the door to a smiling, happy, sweet, adorable Italian man with a table full of goodies for Cammy. The place treats us like we are rock stars.  They really make Cammy feel special and make us all feel like this is our home.  We cannot say enough amazing things about the Hyatt staff. 
Mr. A. Di Baglioni took a look at Cammy, remarked how beautiful she was, looked back at me with teary eyes and said "My sister had the same condition."  I thought he meant that his sister had special needs and was in a wheelchair.  He watched her hands and commented how Cammy was bringing back so many memories of his sister who had the same hand stereotypy.  Tears rolled down my face as I said "your sister had Rett syndrome." I asked how old she was when she passed away.  He said "47." I smiled ear to ear hearing that, threw my arms around him and thanked him for giving me hope.  He said they were from Italy.  His mom was 87 years old when she passed away 6 months after his sister passed away.  She didn't want to die before her daughter; she held on until her daughter could no longer.  

With blurry red eyes, we went down for dinner.  Cammy was so excited for her spaghetti and meatballs.  She went into a food coma.  :)

While we were finishing up, A. Di Baglioni found us again.  He handed me a card with beautiful handwritten calligraphy that he penned.  He shared more of his background with us.  We love learning more about people, especially people who want to learn more about Cammy. When I told him how beautiful his penmanship was, I said that he could charge a lot for wedding invitations.  He smiled and said he does  write them, then donates the money to charities.  oh my heart.  I want to take him home with us!  We wished he was off duty so he could sit with us all night. 

We opened his card and cried again.  

Our new friend completely turned our day around.  

After brushing Cammy's teeth, grandpa B. read her a little bit of her new book.  Cammy was excited to see her new Frozen pillowcase made just for this trip.  As always, she was smiling when she laid in bed.  

Goodnight Boston.

To join Cammy Can's Crusade against Rett, you can register for our March 21 fundraiser or make a donation at http://www.rettsyndrome.org/special-events/cammy