Rachel Nyberg's Website

Week update 
Now that I'm looking through Rachel's notebook I see I forgot to mention a couple of things that happened this week. Let's see, in speech therapy Rachel can turn the pages of a book, it takes her a while but she doesn't need help. She's also getting better at pushing with her legs when they're helping her play on the therapy ball.
Today we went to church and it was the grand opening of the new wheelchair lift. Well actually we used it last week when we went upstairs for Sunday school. It looks like a glass elevator so I make Luke go in it with Rachel and I carry the bags and the baby up the stairs. Then at home I weeded the flower garden and both the girls sat in their strollers outside. Luke was watering everything and ran cold water over Rachel's hand a few times. She'd smile and lift her arm up out of the way. She liked being outside so I hope we don't have such a hot summer this year so that she can get outside more. She's almost as pale as I am! ;)

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Since a bunch of photos were taken off the site when the server crashed here are some more:

Here's a pic from when my mom came up to help me with the kids while Luke was in the Boundary Waters. Hudson's trying to snitch cookie dough and Kaleigh's trying to climb onto the tray under Rachel's stroller.

Here's Rachel with the doll she picked out for her birthday. The bump on her tummy... in her tummy(?) is her baclofen pump. Not sure if it will be obvious to others but I thought I'd point it out.

Here's Rachel completely zonked after a busy birthday. She's really tall now! Oh she also has her hand splints on to help keep her thumbs out. Otherwise she squishes them in her fists all day and that's not very good for her hands.

And the image quality is bad but here's Kaleigh after finding sidewalk chalk under Hudson's bed.

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I talked to Kari and as the test went on the words got really hard. But considering she just turned 4 she still had an amazing score! She did the usual stuff in therapy on Wednesday. I don't think they did it yesterday but last week they put Rachel on the flat swing and then put a big stack of blocks behind her so she could knock them down. At first they had to tickle her to get her to push her legs to make the swing move but she loved making the blocks crash all over the floor so she kept getting better until she was pushing out with her legs more on her own.

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Busy. . . summer? 
Sorry I haven't been updating lately. Karina's started crawling and all the other things that pop up during the summer don't leave me a lot of time to sit down and add an entry. But today at work I updated some of the "static" pages on the side. Rachel finished her vocab test with a score of 94 so that's only a little below average for a 4 yr old. Since she just turned 4 it's still pretty impressive. I'm not sure how it was high as 5 yr old the other day and then at the end was lower, I haven't gotten a chance to ask Kari how that went yet.

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On Wednesday Rachel slept through most of speech therapy. That's what she used to do all the time. The second it was time for speech she'd be snoozing. PT probably wore her out, she did a great job with headcontrol practice and Bev's been working on stretching her out more these past few weeks. In OT they were working on getting her to push a button with her cheek but she wouldn't do it. She was still just getting up from her nap or she was just being stubborn.
Kari helped Rachel play with her Cabbage Patch baby. When Kari asked if the baby had a "stinky diaper" Rachel though it was hilarious.

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Monday Vocab Test 
In PT her therapist worked on her shoulders and hips. Both are a little tight. Rachel wasn't too happy about that but it's good they're getting worked out and that she's not so floppy anymore.
In Speech therapy she had a vocab test. For each question on the test there were four black and white drawings on a page and then Teresa (ST) would read a word and ask which picture it was. Then Rachel would either look at the picture or if she wasn't cooperating then Teresa would point to each picture and ask "Is this it?" and Rachel would blink twice to say yes to the right one. Rachel was crabby about it because she wanted to play but she went along with it anyway. You fail the test if you get 8 wrong in a row and through the entire test Rachel only got 5 wrong and she has the vocabulary of a 5 year old! She even knew what a porcupine was! She got fence and railing mixed up but even that's pretty good!

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Busy week and a Happy Birthday 
Luke was in the Boundry Waters for a week long trip so I didn't update at all last week. Rachel's grandmas helped with the kiddos so everything went well. The cutest story I remember from speech therapy is they had Rachel be Simon for Simon says. She would use her communication board (the pexiglass one) and look at the picture of a person standing for "Simon says" and then look at a picture of an action that she wanted Kari and her therapist to do. This built skills because she had to look at "Simon says" first and then the action. So it was kind of like learning to put two words/phrases together for her.
Rachel had a very nice birthday. We brought her to Target and we got her a couple movies and a feather boa and she picked out a Cabbage Patch baby. Luke was showing her different dolls and she started "talking" when she saw that one. Then Luke got me from the movie section and when we went back to the doll aisle she did it again. When we opened family presents at her party we would show her the present and she would smile and start "talking". She was doing really well, was really happy, and I was very impressed with her reacting to each present.

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Happy Birthday Rachel 
:) It's Rachel's 4th Birthday today!! :)

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Lastest accomplishments 
Lately Rachel seems to be trying to copy what we say. Luke was copying her noises and Rachel was mimicking him right back. Then Kari noticed the same thing, when Kari would talk to her Rachel would try to make similar sounds/syllables back. Then Luke was teasing Rachel about something cute and Rachel angrily made her "Da da da" noises. I think she was scolding him.

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Uh Oh 
The server that hosted Rachel's site crashed over the weekend. Thankfully I still have the nurses's communication books to have a record of Rachel's accomplishments at school and therapy since Kari had such good notes on how each day went. Dina's e-mails from school had a lot of good information as well and I didn't delete those so thankfully I didn't lose all record of the couple months lost. If anyone has anything more recent than Feb 20 printed out at home please let me know. After Rachel's accident regular Baby books (the ones where you record first steps and stuff like that) didn't apply and I'd been relying on this as a sort of scrapbook instead.

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Whew it's been a while. Therapy has gone well, she's been sleepy lately.
Speech therapy has been working more on her communication board and getting us to use it more often. Having her choose between 4 activities. And asking her to look at the "all done" picture when she wants to quit. School went well, we dressed Rachel in pink sparkle pants, a kitten valentine's shirt and a pink zip up hoodie (that matched the hoodie Kari was wearing).
Since people have mentioned how much they like hearing from Rachel's teacher, here's some of last week's e-mail:
Rachel was dressed so cute for our Valentine's Day party. Kari and her arrived right on time and settled in with the other children. Kari read to Rachel and some others for a short time before Morning Circle. We opened with our "Welcome Song," and practiced each others' names. Next, our speech pathologist came in for group. She read a Valentine's story, reviewed vocabulary and concepts. Rachel's PT helped her during her OT group activities. They were really working her hard. She always seems to enjoy getting down on the carpet with the other children the most. After OT, she decorated her "Valentine Keeper" with pretty hearts and stickers. She was starting to fade at this point. The kids really liked her "Hello Kitty" valentine pouches, and everyone had a great time.
Kari said they had a tablecloth full of paper hearts that the kids sat around and shook the cloth and so they'd go up into the air and fall down around Rachel. She really liked that activity.
Last night Rachel took a late evening nap and then was up until 12:30 am and so today she's very vocal and crabby.
Sorry for fragmented sentences and bad grammar I'm super tired and I figured I better hurry and post something before I get too behind.

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Happy Valentine's Day 
Yesterday Kari and Rachel made valentines for Valentine's day at school (tomorrow). I bought little Hello Kitty bags and Kari helped Rachel put treats in each one. Rachel was happy that morning but kind of whiny later in the day. It sounded as if she had a toy flute upstairs that she was playing with.
One of her therapists was sick on Monday so we kept her home from therapy since she seemed a little extra gunky on Sunday. Rachel seemed kind of mad with us that she wasn't out playing but she seems to have gotten over her cold or the tail end of her pneumonia.

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School on Thursday 
Again, a BIG thanks to Rachel's teacher for e-mailing how the day goes at school!

Rachel stayed awake for her entire school session! She was all smiles when she arrived, and as the other children greeted her. Kari had about 5 children around her and Rachel as she read them a story. Our circle time group focused on the upcoming Valentine holiday. Her speech/pathologist had her "switch" all set up, so that she could respond with the other children. One child commented to me that "Rachel knows all the answers!" Her speech/language group worked on "position/spatial" concepts...in front of/on/in/behind, etc, and Valentine vocabulary. Next, was OT. Dawn, her COTA, was out at a conference, so it was up to me. I think I must be much louder than her other teachers, because she didn't fall asleep. There is a dance portion during one of the songs, so we improvised and when the other children danced, she got to shake/bang a tambourine. She really liked that part. We placed her on the floor with the other kids for the ball portion, and again she liked the big ! sounds when she slapped it. Then she stretched out on her back over the ball. Big smiles and verbalizations. [Rachel has pictures of all of us that we show her and ask her to identify.] I asked her "Where's Mama, Where's Dada, Where's Kaleigh?" Nothing. When I asked, "Where's Hudson?" Big growls and grunts, talk, talk, talk. Kept happening each time I got to Hudson. We finished with Rachel making a surprise, that you won't get to see until the 15th.

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Busy Thursday 
We had a really busy day on Thursday. Rachel went to school in the morning and we had everything ready to go and everyone in the van waiting so that when Rachel got dropped off we just put her in her seat, the stroller in the back, and drove off to Duluth. I didn't get the chance to ask Kari how school went. Then we did some errands up at the mall including getting pictures of Karina taken at Sears and Hudson and I picking out yarn for sweaters that my mom is going to make us. Then my grandparents stopped by my parents' house to see the kids. That evening we had a doctor's appointment with the pediatric gastroenterologist from the Cities at the new Pediatric building for St. Mary's. I hope with the new building they can attract some more specialized pediatricians. Our appointment was at quarter to 7pm so there was no one else in the building except one receptionist and a cleaning person. It was great. We were able to park right across the street from the front door and were in and out in a half hour. Another thing I appreciated was the divided waiting area, half was for sick kids and the other half for well kids. I don't need to give Rachel a chance of catching anything.
The Dr. said everything looked great. (He always says that.) He said her reflux would be of concern if she keeps having a lot of pneumonias or having formula come out of her trach and we could do more tests. We're also looking at looking at her esophagus to make sure it's not getting worn down when she'll be asleep to get her teeth cleaned. Since Rachel will not open her mouth voluntarily we'll have to have her sleeping in order for her teeth to be cleaned. We have an consulation with the dentist at the end of this month so we'll have to ask if he'd be willing to coordinate something with the gastroenterologist. After the appointment, Hudson and Luke had dinner at my parents (they had been out bumming around town most of the day) and we didn't get home until 10! Rachel will be probably pretty tired today. Whew!

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Wednesday Therapy 
Usually to help make it easier for Rachel to push the button we put it above her shoulder. Now OT is having her work on having Rachel keep her arms down and setting the button on her lap or a tray in front of her and having her push it there. It's really hard for Rachel to do this because her natural tendency is to want to bring her arms up but she did a great job and pushed the button 5X while it was on her lap. If Rachel tried to pull her arms up Germaine would remind her it was the wrong way and Rachel would bring her arm down and push the button!

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