Rachel Nyberg's Website

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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Duck, Duck, Rachel! 
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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Tooths ; ) 
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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Spring soon 
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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Yes she can! 
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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I know I usually say we're really busy but Wednesday was packed. I took the day off and after we dropped off Rachel and Wendy at therapy, Luke and I went to Lowes to look into replacing our century old windows with our tax refund. I talked with her Speech therapist for a little while but it was really cute when she had Rachel find her way back to the therapy room by having Rachel look in the direction that they needed to go. If they took a wrong turn Rachel would start talking, maybe her way of saying "Ah! Go back!" After speech Rachel decided to sleep through the rest of her therapies. She was really crabby yesterday. Then I got my hair cut and right after I got back we went down to UMD to practice with the myTobii again. We were having a few technical glitches but she seemed to be trying. And when asked who she wanted to play with the disco ball lights she picked 'Rachel' many times, even before they told her who it was. (A picture of a little girl with pigtails and a bow and party hat on her head and her tounge sticking out.) Now I'm thinking she must know how to read her name.... I have to try it out when I get home.

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Still no school 
Rachel's feeling much better now but she still didn't have school on Monday due to spring break. On Friday we worked on the stages of having her signed up for a CADI waiver. In the future it will allow us to build a ramp on the house, modify our van for wheelchair access, pay for respite care, stuff like that. I have no idea how any of it works, just that it allows people who have a nursing home level of care to be able to live at home by helping to purchase the equipment needed.
I think Rachel's nervous that her throat still hurts from when she had strep because she is NOT swallowing. Grandpa helped me wash her hair when we were down there for Easter and it is soooo soft. It was so relaxing that Rachel fell asleep. Her hair is so crazy long that we'll have to cut it soon.

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Feeling better 
Rachel isn't completely up to par yet so Luke kept her home from therapy today. She has spring break this week and should be ok to go back to her normal schedule next week.

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Sicky - Update 
Rachel has a fever and has thrown up a few times. Please keep her in your prayers. Thanks!

Rachel slept in until 10 am and woke up very crabby. Luke brought her in to see her Dr. and she has strep. They're on their way to pick up her antibiotics and hopefully she'll be up to seeing her neurologist tommorrow but we'll see how it goes.

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Big girl! 
Rachel lost her first tooth today! I just noticed it was wiggly yesterday and today it was barely bumped and it fell right out!

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Spring is coming... sometime... right? 
Ugh, this winter's been pretty icky. Luckily we only got the short stomach flu and we didn't get the really bad one that lasts 5 days. (So far, knock on wood) Luke, maybe Kaleigh and I got sore throats but they went away after a couple days so I'll have to watch Rachel closely to see if she's seems to feel under the weather. We've also still managed to evade pneumonia so far.

She's been loving school. On school days she's chatting up a storm and is so excited to go. They tested to see if she new her colors and shapes and she did awesome. (Of course, she's known them forever. ;) )

She's also being a stinker for therapy. She's back to having all three types and in Speech she was okay. In OT she was naughty. She didn't want to keep her head in the middle so she got mad, made her crabby sounds at her therapist and turned her head to the right kept it there. But she did do good button pushing eventually. Then she got to PT and she was happy, singing, and a much nicer girl.

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