Rachel Nyberg's Website

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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Flu - updated again 
Kaleigh and Luke came down with the flu this week. Thankfully Rachel hasn't caught it yet. Please pray that she successfully evades it again.
We kept Rachel home from school though so that if she is already infected that she doesn't pass it on to other kids at the school and because of some mix-ups with the new PCA's daycare. Luckily I was home anyway since Luke had the flu and wasn't able to take care of a sick baby on his own.
Kari's last day was Wednesday. :( When we ask Rachel what she thinks Kari is going to have almost from the beginning she's consistently said "Boy". I didn't realize this until I mentioned to Kari that it's what she told Linda, Rachel's night nurse. I'm happy that Rachel's effectively using her yes and no blinking with pretty much everyone. Sometimes she won't do it if she's being stubborn that day.

Update: Now Hudson has the flu. Eeek!

Update again: Man, this thing is catchy. We all got it but it wasn't too bad. We'll keep the kids home from school on Monday and I hope the nurses didn't get it.

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Sorry for lack of updates... again. 
For the last few weeks I've been working some overtime hours and we've been working on hiring new PCA's to cover for Kari while she goes on maternity leave. We've always needed a third PCA so we're working on finding two more PCA's. It's crazy trying to hire people. It's amazing how many people don't show up for interviews.

Rachel's doing well. She still hasn't gotten sick yet this winter. She also hardly throws up at all anymore. It takes a while to notice the lack of something but it just dawned on me the other day. She used to throw up a few times every day... then it settled down to a few times every week, then she used to get urpy at almost every 5pm feeding but now she's doing great and it's only a few times each month!

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Happy New Year! 
Rachel is having a blast playing with her new Christmas toys. She had fun playing board games with Kari. Kari will make her identify the number using her communication board when she spins the wheel to find how many spaces she can go to help Rachel be more involved during the board game. She did really well.
Today Luke was asking Rachel if she knew what love meant. He asked, "Is it when you help take care of each other?"
"Yeah, yeah" she said in her little Rachel vocalizations.
Then she made a vocalization that sounded very much like, "Love ya".

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Merry Christmas! 
Rachel had a very fun, very busy Christmas. She really paid attention to when we showed her the presents and she'd get a little distressed if Kaleigh came over to steal a toy. This year she was able to stay awake for her presents.
My great grandmother got her a musical Tinkerbell snowglobe that has a little fan to blow the snow around inside. There's a switch on the back to make it stay on all the time so I was able to adapt it to work for one of Rachel's switches! Now when she practices with pushing her button, she can watch the snow whoosh around Tinkerbell and hear the song playing. Those kinds of toys are really hard to find now so I was pretty excited that now she has something other than a bubble blower to use her button with.
She received many wonderful presents and got to see lots and lots of family.

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Christmas at School 
Today Santa, a reindeer, and an elf visited Rachel's class! Rachel was really watching Santa Claus and had her best smiles today! She really liked her candy cane that Santa gave her. She also received hair ties and more candy for Christmas from her teacher!

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Sorry I haven't updated in a long time. Life is crazy but now I'm done with school for a month or so and I can catch up with a lot of things that were sitting on the back burner for a while. Like updating! Rachel hasn't gotten sick yet this winter so we're hoping she successfully evades pneumonia this year. We're busy finding someone to be a full time PCA as Kari goes on maternity leave. Rachel continues to love school and have a great time with fun art projects, songs during circle time, and playing with the other kiddos.

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Thursday school 
On Thursday Rachel had made a Christmas tree out of pretty pieces of paper glued onto a green construction paper tree. Luke asked her, "Did you make it for me?"
She blinked, "No".
"Did you make it for mommy?"
"Did you make it for Hudson?"
"Yes", she blinked and she also said "Yeah" verbally as well. Hudson was very proud of his little sister. ;)

Rachel had a great time at school, she loved when they did Christmas music during circle time and got to ring bells. She had huge smiles the entire time.

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Fun Monday 
Rachel had a fun day at school. She got to roll on the therapy ball which she always loves. She also had a blast getting messy with paint and glitter during her art time. I'm almost done with classes for the semester so I'll be better about updating afterwards. Well, until next semester starts!

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