Saturday, August 9, 2014

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.

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