Rachel Nyberg's Website

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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Rachel got to play with the myTobii twice this week! We went back to UMD (we're going about once per month) and they kept it fun and let her pick what she wanted to play. She liked to pick playing with the baby and the bag game. When they play the bag game, Rachel will choose a color bag and they'll open it up and there will be a necklace, bracelet or a pretty princess crown inside. Then Rachel gets to pick who will wear it. Rachel thought it was really funny to make Grandma wear the princess crown because she picked her twice!
She did a great job, but when she was sick of a game she'd look above the computer. But for being an evening appointment she did really well throughout the entire time.

(Oh and Hi Cally! We stopped by Miller Dwan one day to say "Hi" to the nurses but you weren't there that day. Rachel still fits into some of the shirts you got for her! Nice to hear from you, thanks for leaving a note!)

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We met with a myTobii rep during her Speech therapy time for this week. She had fun playing around with it but still wouldn't do as well as the very first time. It was really nice that her speech therapist was there to comment on stuff that Rachel usually does during her sessions with just her communication board. (Pictures velcroed onto plexiglass)
She was supposed to be tracking a little ball that would zig zag across the screen and instead she'd try to predict where it was going to be. If someone said, "It's moving towards the middle" she'd quick look at the middle of the screen instead of following the ball there. It was a little difficult for her to look in the upper part of the screen but there was a little bell there that would set off an alert. It's supposed to be if she wants someone to come over to help her with something. At first it took her awhile to get her eyes up to the bell to turn it on, but once she learned that it made an annoying noise she was able to turn it on right away. She thought it was hilarious and wasn't turning it off. Her speech therapist was laughing at Rachel's stinkerishness.
On one page we were goofing around with she looked right at the picture of a book. Her therapist said that was the one Rachel always chooses first. Then when we got to the basic page we let her look around and play with it. There were family members, feelings, foods, and activities listed so her ST asked "How would having a Tobii make you feel?" And Rachel said "happy".
It sounds as if there are still very few in the country, they were invented in Sweden only a couple of years ago. Hopefully by the time we get all of her paperwork done there will be more available.

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Happy Valentine's Day 
Rachel had a great Valentine's Day. She finally got to go to school and she was able to pass out valentines to all of her little buddies at school. Then when I got home I taped up her valentines on the wall where she usually looks when her head's turned to the left. (Even though it's not supposed to be, shhh don't tell her therapists.)
Oh, then I suppose I should explain. Rachel has a tendency to turn her head to the left, enough that we'd have to worry about muscles shortening and part of her face being a little flatter. So for over the last year we've tried to keep her head in the center or turned to the right as much as possible. Sometimes on her crabby days there's not much you can do to get her to keep it there so now she has a few cute things to look at while she's being stubborn. ;)

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It took Rachel a while to get over being sick but just as she was feeling up to going back to school and therapy the below 0 temps started. So poor Rachel has been stuck at home for two weeks. Rachel's pretty crabby about it some mornings. Hopefully next week it will warm up and she'll be back to her regularly scheduled busyiness. Her Klonopin seems a little off so her legs were tighter this week and she was able to move them much better on her own due to the increase in tone. But she'd also have more seizures so although it's fun to see her move her legs so well, it's probably not something we'll keep going long term.

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Welcome Baby Kaden! 
Kaden was born last Thursday and Rachel was right that Kari would have a boy! He was 7lbs 3oz and so cute with beautiful skin and a perfect little nose.
Rachel, Mom, and I visited Kari and Kaden in the hospital today. Rachel was so excited. She was smiling the entire time we were riding in the car and when we got to Kari's room. Rachel was looking at Kaden while Mom was holding him across the room. Rachel smiled when she got to hold him. I wheeled Rachel's chair next to Kari's bed then Rachel was "telling" Kari all about what had been going on while she was gone and was holding on tight to her finger.

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Doing better 
Rachel seems to be feeling better. Much more bright-eyed and she went to therapy today.

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Rachel's feeling a little better but now she's really sneezy and a little congested. We have to really work hard to keep it from settling in her lungs or she could get pneumonia again this year. So far she's doing a great job coughing and we've been giving her extra vest treatments.
Please pray for a quick and speedy recovery. Thanks!

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