Rachel Nyberg's Website

Fully Staffed 
I think for the first time in three years, pretty sure anyway, we are fully staffed with 4 PCAs and 3 LPNs. To consider us fully staffed I usually figure we need about 3 of each for availablility but this is great!

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Busy, but not much going on ? 
We're very busy now that summer is here but Rachel doesn't have school and has only been back to therapy once since her break ended at the beginning of June. We've hired 2 new PCA's and are looking for a part time LPN so that's been keeping everyone busy as well. Rachel's always interested in new people. She'll sometimes pretend to sleep but peeeek over at them.
She's actually starting to look a little pudgy so I'm going to talk to her nutritionist about lowering her feedings a little bit.
Luke was helping her sit on the edge of the couch with her feet on the floor. Her tone is better so that although she can't balance she was able to hold herself up straight for a while and she looked so big!

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Happy Birthday Rachel! 
(Rachel's still excited it's her birthday.) She paid very close attention to her presents from Shelby this morning and later this afternoon we're having more friends over. She's going to be all partyied out pretty soon!

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Thank you to everyone who was able to attend Rachel's party! Rachel was excited the entire weekend for her birthday. That morning she woke up at 4am! She was smiling and chatting all Saturday and very smiley today. Her actual birthday is on the 10th so she's not quite five yet!

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Birthday Party next Sunday 
Rachel's birthday party will be at our house at 2 pm on Sunday, June 8th. Feel free to drop by and say "Hi!" if you like.

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Crabby, crabby 
We had a great weekend but Rachel was crabby and very vocal. Luke asked "Does your tummy, ear, arm... hurt?" And she'd blink no to all except she said her ear hurt at one point. But it might have been because she keeps turning her head and squishing it into her headrest. She'd have a fever or be even more crabby if she had an ear infection.
Grandma and Grandpa helped us plant all of our gardens on Sunday and she was a little happier outside but we just can't find a good hat for her. Right now it's must not in fashion for girls to have baseball caps because I couldn't find any. She needs one to shade her eyes so that she'll open them outside. She still is very sensitive to light outdoors. Even though we were promised great weather on Sunday, Grandpa got Rachel inside just in the nick of time before it started pouring rain.

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Kaleigh's got it all figured out 
When Kaleigh wants to get out of her playpen first she calls "Dada!" Then when that doesn't work she starts fake coughing. She must figure since Rachel gets attention every time she coughs that it will work for her too. Smart little stinker for only one and a half. ;)

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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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Not much going on 
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!


Rachel holding the balancing stick over the balance beam. She's so cute!

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Bad day, Good day 
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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Under the weather 
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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