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Yesterday Wendy and I brought Rachel to school to meet a Dynavox rep to go through the process of proving and documenting what Rachel can't use so that we can prove that she needs an eye gaze device like the myTobii. (Dynavox is also coming out with one soon but it's unknown when.) Because this is such new technology it's going to take a lot of time and paperwork to prove the extra expense is necessary.
If we got a device that required her to push a switch, she'd be exhausted and frustrated by the end of the day. Even a device at half the price isn't worth it if she won't use it.
Rachel was really watching the screen and did well tracking the pony running across the screen. Pushing the button wasn't consistent but that's what we wanted to prove. One screen had the two options "Ta da" and "Go Wizard" if she picked "Ta da" it made a 'ta da!" musical chord. If she picked "Go Wizard" a wizard went across the screen and turned a dragon into a unicorn. This time we were having her blink twice to say when she wanted to have Wendy push the button. Everytime the computer said "Ta da" she blinked twice and when it said "Go Wizard" she'd very deliberately blink once or try not to blink at all. So it was obvious, even to the rep who had never met Rachel before, that Rachel knew what she wanted.
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Rachel's done with school and is taking a month long break from therapy so there really isn't anything exciting going on. She loved going for a walk and hanging out outside today.
Yesterday Luke asked her, "Do you know what identical means?" She blinked yes. Then he asked if it meant different or the same she blinked no for different and yes for the same. We're continually reminded that she knows more than we realize. It makes us even more excited for her to get the myTobii computer.
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Rachel was hilarious yesterday. At church she wasn't needing a lot of suctioning so we all sat in the back with her next to us. Usually I'm in the nursery with her because her suction machine is so loud. So Rachel decides that she's going to start "talking" during the service. Luke took off her speaking valve and asked if she wanted it back on. Rachel blinked yes. Then he asked if she was going to be quiet. Rachel blinked no. Then Luke put it back on and true to her word she started chatting louder than ever. Rachel's had quite a bit of practice being quiet when she's supposed to. When Luke carries her up the stairs to her room after school he tells her to be quiet because Kaleigh is sleeping. If she's a good girl that day she'll talk downstairs, be quiet going up the stairs and in the hallway and then start talking again once she's in her room. Other days she waits until Luke's at the very top of the stairs and she starts "yelling" just to be naughty.
We went to Luke's grandmother's for Mother's day. Rachel was next to Hudson and he had set his empty cup on a TV tray between himself and Rachel. Suddenly we hear Hudson say, "Rachel! You knocked over my cup!" And Rachel was smiling. Then we set the cup back up on the little table and we could see she was slowly moving her hand to knock it off again.
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Today is the third anniversary of Rachel's accident. This year has been an exciting one. We've been able to see Rachel's personality and intelligence through her communication boards and her fluency with yes/no blinking. She really started to come out of her shell when she started attending school about 3 days per week. We've made it a year with no pneumonia or hospitalizations and have had great nurses, PCAs, therapists, and teacher to help us take of her and bring out her greatest potential.
I've been really bad about pictures this last year... but here's a couple from circus day at school. Thanks Dina!
Clowns!
Rachel holding the balancing stick over the balance beam. She's so cute!
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On Thursday Rachel was really crabby at school. When asked if she wanted to go home, she blinked yes every time. She pulled her hands away when they tried to help her work on her art projects and was vocally 'crabbing' at them the whole day.
Then Friday at school she was happy and smiling and did great with a new switch they got her. It's like a joystick so it's easier for her to activate. She also chose words to finish a story using her communication board. It was about if she was a frog. (In case you were ever wondering, if Rachel was a frog she would live in a campground, eat chocolate bunnies, and love ladybugs.) They asked "Are you sure you would eat chocolate bunnies? Shouldn't frogs eat flies?" And she confirmed that yes, she'd eat chocolate bunnies.
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Rachel's been beeping since Sunday morning/Saturday night. At 17 mins after the hour you hear one quiet. "Beeep." And then nothing for the next hour. It wasn't an alarm sound but I assumed it was her baclofen pump and sure enough we were due for a refill so Luke and Wendy brought her down to Duluth today. So now she'll be all done beeping.
Oh and we found out at UMD that Rachel likes Playdough. I thought that she would think it was icky but she kept choosing it so she got to keep squishing it.
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Rachel did awesome last night. We left the light brighter in the room instead of dimming it and she also seemed to do better when we had the eye tracking box on the screen. It's a little back square that shows two white circles where her eyes are looking. Maybe she was watching her own eyes? I'm not sure but she was looking at the entire screen, not just one side like the last few times and not just at the little tracking box which would have been the case if she was only looking at her eyes.
She had an antihistimine for her allergies which made her a little hyper (or at least counteracted the sedation of her seizure meds) so she was looking everywhere on the screen and keeping everyone busy!
One of the screens had "Stop" "More" and "Go". Rachel had to look at Go or More to listen to music and see the spinning multi-colored lights. We were all laughing when one of the students told Rachel, "Okay now it's time to stop" and when she said stop she pushed Stop on the myTobii screen so the computer would say it. (It's a touch screen for eyes and hands.) Then Rachel immediatly "pushed" Go. And each time the student said "Stop" Rachel kept "pushing" Go right afterwards just to be a stinker. We were all laughing and she thought she was pretty funny too.
I'll update more later but I just wanted to get this up this morning.
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Rachel was sick at school on Friday. She spiked a temp really quickly, which was very odd for her. She was gunky over the weekend, a more aggravated version of my cold. But she was sick last night with another temp spike and her food not agreeing with her so we kept her home from school today.
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Before school on Monday Rachel was up from 1 am until 6 am. Luke and I had a meeting with her teachers and school therapists so we drove Rachel and Wendy to school. Rachel looked as if she'd had coffee that morning. She was wide-eyed and chatting up a storm. She was sooo excited- maybe because we were going with? At school they played Duck, Duck, Goose and everyone kept picking Rachel so Wendy had to push her around the circle in her Tomato chair almost every time. Rachel had a blast though.
Today Rachel, Wendy, Hudson, and I walked to the library to get new books and it was beautiful out! Maybe now it's safe to say that it's spring?
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Rachel lost her other bottom middle tooth! She's such a big girl, and this will make it harder to accidentally bite her tongue so that's really nice. There were clowns at school on Thursday and Rachel seemed to like them. They had a circus day!
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I guess I spoke too soon about spring showing up. Whoops. Two feet of snow at our house so the kiddo's are home from school.
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Rachel's already gone on 3 nice walks in the last few days. She's loved going outside. At school on Friday they had her push a button to make a ladybug toy activate. Once all the other kids in class heard the toy they gathered around to watch and then Rachel did even better button pushing to show off. Once one of the boys tried to touch it she took her hand off of the button and wouldn't activate it again until Wendy asked if she didn't want him touching it anymore. She blinked yes and once he stopped touching the ladybug then she started activating it again.
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Wendy asked Rachel this morning multiple times if she wanted to go to school and Rachel said no each time. Then when Rachel got to school she slept through the whole thing. Then she would peek her eyes open, smile, and then go back to sleep. Once she got home she was wide awake.
Kari visited with the baby on Friday and when Kari asked three different times if she liked the baby and each time she said no. (But in January we told Rachel when Kari left on maternity leave that she had to go take care of her baby so she's pretty biased.)
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Maybe we already knew this and I just forgot but Rachel can read her name. (Or recognize it at least) Martena also wrote down Hudson and Kaleigh's name and asked Rachel which was her brother's name. She looked right at the word Hudson! She also knew Karina so she might just have been looking for the 'K'. I knew they held up different pictures and different letters/shapes/colors for her to identify but I don't know if they hold up different words and ask if she can differentiate between the two. I know it's not real 'reading' but that was pretty cool.
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