August 2-3, 2014: Ryan's "Best Day Ever"

Saturday, August 2:
Cameron woke up at 1 am, then again at 4:30 and remained up for the morning. I think she was just excited to not have an appointment today. As soon as Ryan woke up, she asked it it was time for the beach. She acted like it was Christmas when Mrs. D'Amour pulled out the beach bag full of buckets and shovels.
Today was Ryan's big day. She's really been a trooper through all of this. She's been looking forward to going to the beach all trip. Today was her big beach day and we were not going to let a little rain stop us!
Coast Guard Beach had an awesome gigantic wheelchair with big wheels made for off roading. Cammy looked like a little peanut in it. We had her all bundled up with a golf umbrella keeping her dry. She napped the entire time we were at the beach. With the cooler weather, the sound of the rain, I thought it was prime napping conditions. 

Ryan kicked off her shoes and started digging with one of the shovels. She and Billy went to the water to dip their toes in and get water for their sand castles. She was in heaven.
We noticed dozens and dozens of seals clustered together on the sand. We walked closer to get a better look. Everyone there said they had never seen anything like that for as long as they'd been coming to the Cape. Ryan was more interesting in trying to skip stones in the water.
We left by noon, just in time as the rain really started pouring in. 

It was so nice to have a homemade lunch back in a house. Even though it rained all day, it was so nice to be stuck inside a big house rather than a hotel room. It was a perfect afternoon to rest and watch movies. No one complained about that plan.
The girls were excited about a home cooked dinner. Billy was thrilled to get into the kitchen and cook after a week hiatus. He made a delicious seafood risotto with shrimp, scallops and swordfish.
We have enjoyed every minute on Cape Cod. We understand why people have summer homes here!

Sunday, August 3:
Even though we've been in an incredible house with awesome beds to sleep in, Cameron has been awake from 1-4am again giggling and having her own party. "Angel parties" are common amongst girls with Rett. They just seem so be having a little party by themselves in their bed. Cammy does not have them often, I can only recall 3 in the past 3 years. Don't get me wrong, I'm glad she's giggling for hours in the middle of the night rather than screaming or crying, but it would be nice to get some sleep.  I have no idea how Ryan has slept right through it the past two nights sleeping right next to her. Billy and I unfortunately could not sleep through the giggles and chatting.
After a nice breakfast, we headed out to the MA Audobon. Again, Ryan was in heaven. Mrs. D said that she's never even taken her own children there; we were the first kids she's taken. Ry loved the little turtles in the aquarium too.  There were beautiful trails. Ryan loved looking at all the different trees.   It was pretty easy to push the wheelchair through the trails too.
After lunch we said our goodbyes and headed back to Boston. We are going to miss Cape Cod. It was the perfect getaway in the midst of all of this. We already booked our stay next summer! 

When we checked in, we headed to the pool for a quick swim to loosen Cammy up. She hasn't had any therapies in 2 weeks, so we need to make sure she is well stretched.  Then, we walked around Brookline. It reminded us of Roscoe Village in Chicago.
Ryan and Cameron were excited to eat Mac n Cheese from Panera. They were even more excited to watch a movie before bed.
We are ready for our final 2 days in Boston. Tomorrow should be an easy day at the office. Tuesday will be a long one.

August 1: Off to Cape Cod

After we hugged almost every staff member for such an incredible stay at the hotel, we packed up the rooftop carrier and van to head to Cape Cod for the weekend.

We have been so excited for this weekend ever since our friends offered to open their home up to us. We were so excited to first meet the Endres crew for lunch. We have met so many incredible Rett families in our Rett journey.  We are so lucky to have a few in our lives that we know we would have been friends with regardless of Rett.  Back home, we have our little crew of Illinois-Wisconsin families that we make sure we see regularly.  We wish the Endres family lived closer because we know they'd fit right in. 
Jilly and Cammy both slept through lunch, but I'm pretty sure they were just letting their parents catch up without being rudely interrupted in their own conversation.  Even though Jennifer and I (or any Rett mom) usually talk about Rett, our families, our girls, it's so nice to see and hear Billy and Justin (or any Rett dad like Billy) talk about everyday things and not Rett.  I love and appreciate that Rett is not always on their minds and they can separate it.  They talk like any friends do. 
Both girls perked right up at Sundae School for ice cream. Ryan wanted to know if Colin could have ice cream any time he wanted to. Cammy tried a new ice cream, Oreo. She loved the whipped cream and REAL ice cream. Jilly and Cammy were having their own conversation while Jennifer and I were being silly behind the cameras to make them smile for us. They were giving each other eyes like they were so embarrassed of us. I know Cammy was saying "See what I have to deal with?" Cammy was all smiles for Justin.  I had to have a talk with her again (as Cammy prefers many husbands to the wives) that Justin belonged to Jennifer and not her  We had so much fun and were so grateful that they could take time out of their day to hang out with us.

 

After our goodbyes, we headed to the D'Amour home. We were thrilled to be in a home and that we felt at home. Ryan was so excited to run around a home again. Cammy and Ryan loved walking on the pier to look at the water and boats before bedtime.

Billy and I had been waiting for lobster rolls all trip and we were not disappointed. Thank you for a lovely evening Mrs. D'Amour. Dinner and your company has hit the spot.
We are looking forward to a good night's sleep and play on the Cape tomorrow.

July 31, 2014 - Wicked Smaaaart

Ricky made Cammy and Ryan their personalized Mickey Mouse pancakes for breakfast. We gave Ricky big hugs goodbye as he's off work tomorrow and we check out tomorrow. We promised to send hi a Cammy Can shirt We are going to miss him so much. The entire breakfast staff has been incredible.

We received the results of the Mullen Scales of Learning Assessment.  Cameron scored at 62 months for the Receptive Language! She was identifying letters, 4 letter words, etc. 62 months! She is FIVE and she scored at the age appropriate level! #ProudParent. This validated everything we, school, therapists have been working on with her. Assume competence! Talking with our children the same way, using every opportunity as a teachable moment has been paying off. It's all in there, our girls just need the right way to pull it all out! What a big boost to her confidence going to a new school, Kindergarten, in a couple of weeks! This report was immediate sent to her teachers to keep in their records for any IEP meetings. #MyKidIsWickedSmaaart #RettIsMessingWithTheWrongKid

We got to the hospital around 10:30 to check in for Cammy's EKG. Ryan was busy in the waiting room which was an awesome play area. She was busy building blocks, coloring and making Cammy pictures. Cammy was all smiles during the EKG. She smiled and giggled the entire time. They took an ultrasound wand to her chest, neck and stomach. When we finished, Ryan ran up to her with a beach photo she made for Cammy. Ryan was swimming in the picture and Cammy was in the sand under an umbrella

 

The girls had McDonald's for lunch (thank you Lily, Grace, Jennifer and Jon Brown).
Billy and I had our medication training where we learned how to give shots and check Cammy's blood-sugar levels. We have give 2 injections a day. One in the morning and one at night. The injection sires are in the triceps & thighs.  We are to create a system to switch off locations.  We are going with left side on odd days and right side on even days, arms in the morning and legs in the evening.  The girls were happy to put on headphones and watch a movie during our training.  I know this will become second nature after a couple injections.  Cammy will be on a very low dose for a few days, then it'll increase for a few days, then she'll be on the full dose.  We have to keep a log of her injections, location of injection and glucose levels 30 minutes after the injection. 
We thought we had to get another bone age xray but radiology said the one we did last Friday was good enough.
We left the hospital at 3.
We picked up a fun package from the front desk from our dear friend, Young. Cammy smiled so big when I read her the card and showed her all the goodies he sent.
We hoped the girls would take a nap, but the 10 minute nap in the car tied them over. They were ready to swim!
Cammy is most happy when she is swimming. Ryan is getting braver in the water, putting her head under and jumping in (sort of).
Miss Cameron has started doing something new on this trip ... taking showers. After we swim, we give her a choice of a bath back in the room or a shower in the locker room and she chooses the shower every time. Thank goodness for handicap showers with chairs in them. I have to hold her on my lap really tight, but it's actually a lot less strain on my back than giving her a bath. I think she loved the mint scented shampoo and conditioner in the locker room, but maybe she knows this is what big kids do and that's why she's preferring it lately.
We ordered Chinese food for our last night in the Hyatt and enjoyed our picnic dinner outside. Cameron has been loving chicken fried rice.

We had our dessert in our room as Cameron told daddy what was on her mind for her journal. She told him she was happy, that she loved swimming. She didn't want to talk about the hospital.
We are checking out tomorrow and heading to Cape Cod for the weekend. We will be back in Boston Sunday evening for 2 more days of hospital visits.

July 30, 2014: EEG - Neuroscientist in Training

We had another early breakfast at 6:30. Cammy was just as excited to see Ricky as he was to see her. She has loved everything she's eaten here. She's gotten quite spoiled that I'm worried when we get back home and it's frozen pancakes, instant oatmeal for breakfast again. Sunday morning Ricky made her personalizes Mickey Mouse pancakes and this morning she devoured 3 pieces of french toast with syrup, strawberries and whip cream. 

We arrived at the office at 8:00 for her EEG. Tessa put all Cammy's monitors on while she explained the procedure. The hair net that was going to be put on has 128 sensors on it to check different areas of the brain Cammy would watch just have to watch a movie They calibrated a Tobii to track her eyes first, then put Sesame Street on. Tessa put her cap on while Morgan sat with her. She smiled and giggled the entire time. The girls were excited also to be watching something other than Dora They tracked her brain activity and had her hand sensors on. She first watched a bit of Sesame Street with her hands free, then they braced her left, then they braced both. 

We then headed down to the 4th floor to meet with Heather. We were back in the room for more autonomic testing. A ton more of mail was waiting for us.  This has been the biggest boost for us.  Thank you everyone!  Cammy was excited to watch more Sesame Street during the autonomic testing for 90-120 minutes.  

We ate lunch back at the hotel. We all laid down for a nap at 2 and everyone slept until 5. A 3 hour nap for each of us has never happened. I guess Boston caught up to us.
We headed out to Brookline to eat at Otto's, but there was an hour wait. So, we went across the street to The Upper Crust. Ryan picked out half of the pizza with cheese, black olives and sausage while Cammy, Billy and I wanted proscuitto and roasted red peppers. Cammy loved it!

We enjoyed dessert (courtesy of the Prestipino's) in the courtyard of our hotel. Then we put up some of the awesome pictures and decorations we received in the mail today while the girls played dress up with the silly glasses that the Brown, Sweeney and Palermo families sent with their paper doll chain.
Thank you all so much. Getting the pieces of mail puts smiles on all of our faces.

 

Today was a good day.
Tomorrow Cammy has an EKG, then Billy and I have medication training.
Goodnight Boston.