Rachel Nyberg's Website

Photo update 

Here's Rachel and Kaleigh hanging out on Rachel's couch.

Here's Rachel's communication board that we use at home.

Here's Rachel ready for her first day of school.

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My Tobii 
The My Tobii is a computer that has a touch screen. There are small cameras in the bottom of the frame of the screen that determine what Rachel is looking at on the screen, allowing her to "push" the buttons on the screen using her eye gazes. When she looks at a picture on the screen, we can tell where she's looking because a little purple circle fills up like a pie chart over the image and when she's looked at the same picture long enough the circle is complete and the computer says the word or phrase that the picture represents.

Rachel did just awesome, the funny thing was they weren't prepared for her to do so well. I wasn't suprised but I was worried she'd be tired and not cooperate. They said they've never had anyone pick it up as quickly as she did. Other people would take 45 minutes to do what she did in 2 minutes. I don't know if it was even that long. As soon as they had the pictures up on the screen she was looking at them. They had a folder of screens they had thought would be too advanced for her but they quickly realized that wasn't the case. :)

The first screen was a picture of bubbles more than half the size of the screen and Rachel kept "pushing" it, they'd move to a smaller picture on a different side of the screen and she'd of course find it right away and "push" it. They read a book and the only option they gave was "Turn the page" so I explained that Rachel has a whole board of "read the book" options at home that Kari goes through with her all the time. Needless to say, this was a piece of cake for her too. Then if they went to a menu screen Rachel would be "pushing" buttons and almost recalibrated the computer! They learned quickly to cover the cameras on the bottom.

The only problem came later she wasn't looking over at the objects on the left side of the screen as well. If I encouraged her, "Okay Rachel I know you're working hard, can you look over at the ball?" Then -boom- she did it right after that. But otherwise she was looking at the two pictures on the right side one after the other.

Then we took a break while they put all the pictures on the right side of the screen- maybe 8 or so to have Rachel say how she wanted to play with the baby doll. But after the break Rachel was coughing more and kind of crabby. She wasn't selecting very many of them and none of the purple cicles were showing up so I couldn't tell what she was looking at either. Then I asked her to look at the pink square blanket and -boom- she picked it right after that and didn't even look at the others first. Then a little while later I asked her to look at "get dressed" and the same thing again, she looked at "get dressed" without even glancing at any of the others first. So I'm not sure if it was that she was crabby, sleepy, or what was going on. Once I asked her to do it, she did it pretty quickly afterwards.

Rachel had a great time and we're going back on November 9th to do it again.

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Crazy week 
Sorry about being so bad about updating. The usual stuff is going on, nothing super new. It's just all happening at once so I've been bad about uploading photos. Today we're going to UMD to work with the speech therapy clinic on seeing if Rachel will be able to use a My Tobii. It's even cooler than the Dynavox she had last spring. But she'll probably be really sleepy by the time we get down there. Rachel's been slowly working her way into her winter sleeping schedule. She'll wake up at 4 am and fall asleep by 5 pm.
Bill called! He'll be working in the area again so hopefully he'll have the chance to stop by and visit and see how big Rachel and Kaleigh have gotten.

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Busy Monday 
Rachel was so excited to go to school today! She was smiling and talking up a storm. Now they're sending letters home with the kids with all the activities for the day. Rachel shows up after breakfast so I'll start from there:
Circle Time
We practiced our "Good Morning" song, counted up to 1 on the calender (because it was the first of Oct) and our Weather Watcher, Rachel, let us know that it was "cloudy" outside. (The kids pick out what Weather Bear has to wear based on the weather outside that day.) Then we all participated in "The Very Hungry Pumpkin" color label activity. It involved an orange pumpkin that ate all different colored foods. Each time he ate a different colored food, he turned that color.
Then they had playtime.
We created beautiful "Finger Leaf Trees". This required the kids to identify the colors orange, red and yellow and then used their fingers to dab each color onto a tree until it was a beautiful fall tree. Messy but fun! We also used a pom pom dipped in orange paint to stamp pumpkins on a vine.
And then Rachel leaves right after art. One of the other boys that used to be shy around Rachel came up and gave her a kiss on the arm. (Luke says he's going to school to guard her from all these boys ;))
Kari's training in a new PCA and so after all three got home Kari has been showing her all the activities that she does with Rachel but only for a few minutes at a time so they can fit it all in. By the time I got home Rachel was tuckered out!

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This weekend wasn't too exciting. Luke went to the Cities for a conference and stopped at IKEA and brought back a new dresser for Rachel. It has seven drawers and is a little bit bigger than her old one. In the beginning I was teasing her that she was going to need to go clothes shopping to fill it up but after I finished transfering everything over and reorganizing stuff in her closet she has it decently filled. (Darn it.)
I'm going to have to go through her paperwork again and see what we can get rid of as well, one of the old drawers had paperwork in it and I won't do that to this dresser because I'm concerned the bottom of the drawer would fall out. So yeah, I'll be organizing paperwork and catching up on my school stuff so it will probably be a bit longer until I update with photos.

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Rachel's so cute! 
Luke was teasing Rachel about all the boyfriends she seems to accumulate at school. He said, "That's it Rachel, I don't think I can let you go to school anymore."
And in her Rachel-voice she said, "Noooooo." :)
She said it with a big smile on her face because she knew he was teasing.
We're trying out a neck orthotic that will help hold up her head when she using her walker. Rachel seemed to like it yesterday.

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Wednesday already? 
I'll have to update more later, Luke threw his back out on Monday and we're all busier than normal.
In the meantime I will cheat and used Rachel's teacher's e-mail to update on how school went on Monday:
"Hello...Rachel did great yesterday. It is so nice, now that we split the class. I actually have time to sit with Rachel and do some work. We practiced colors...I'm learning from Kari how to interpret her gazes and blinking. She had her switch all programmed during circle time with color choices, a morning greeting and "Old MacDonald" animal choices. She stayed awake the entire class and I know she enjoyed herself. She had PT @ 8:30 and her Speech/Lang teacher came to assist her during Circle Time. During Art, she stamped different size apples on a tree and then stamped smaller apples onto the letter Aa."

Thanks Dina!

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Busy weekend 
We made a quick trip to Duluth over the weekend. We went down Friday and had a great time hanging out with friends for the evening. Then on Saturday Luke helped my dad (and grandpa and uncle) reroof my parents' house. That took 12 hours and then we drove right home. That was in just enough time to get up early for church the next morning. Kari takes care of Rachel in one of the nurseries so we don't have to worry about Rachel needing suctioning or her legs getting chilly from sitting too long. When we went home for lunch, Rachel took a nap and I got caught up on my school work. On the last Sunday of each month we get together with people from our church that live in the same area that we do. We actually live about a half hour drive away from church so it's nice to hang out somewhere more local. The weather was beautiful and we had a great time.

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Thursday school day 
I didn't get a chance to talk to Kari after work on Thursday so I'm updating from the communication notebook. ;)
"Rachel was smiley this morning, fixed her hair then off to school. Rachel seemed to enjoy herself. She colored a book about fall and was very vocal during occupational therapy. She "danced" and then watched all the kids crawl through a tunnel and act wild. She was all smiles and very vocal. She had two friends around her today, Audrey and Taylor. She did a little talking to them. They also played a game where they passed a ball to each other in a circle."

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First Day of School! 
I'll update more later (with a picture even...) but today I took a half day off and brought Rachel to school this morning. She had great day and was awake the entire time and hardly needed any suctioning. What a big difference since last year!

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Little better 
Rachel didn't go to therapy on Wednesday since she was still sick. She's feeling a little better and slept well last night.

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Rachel's cold is doing okay but she only slept 4 hours last night and her heart rate is up which I'm never excited about but her oxygen levels are fine so as long as we don't let the gunk in her lungs sit in one spot too long she should do just fine. That's where her vest treatment comes in handy. It makes it easier to cough out all the gunk in her lungs. Since she's not up and bopping around she could have a tendency to have it build up in one spot. Then the gunk could possibly get infected and cause pneumonia... which is nooo fun. But we knew this was coming because Luke and I both had colds so we caught it very early and it shouldn't escalate into a bigger problem.

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Wheelchair day 
On Monday Kari, Rachel, Kaleigh, and I (all the girls again!) went up to Hibbing but instead of therapy Rachel got off easy. We met with all of her therapists and her medical supply company and talked about what she'll need for her new wheelchair. The one we've been using lately is a demo. Now that we've used it for a while we know what we like about it and what we need to adjust. We also learned ways to use it that we didn't realize were a feature until then. The supports at her sides have buttons to make them swing open to make it easier to pick her up out of her chair.... but we didn't know that until yesterday. ;) Kaleigh did a pretty good job playing in the therapy room. She's walking a little more now and for longer distances.
Rachel's getting the cold that Luke and I have had for the past couple of days. She was up at 4am and not feeling very good so hopefully she kicks this soon.

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On Sunday we went for a family walk and ended up at the park. Rachel went down the slide with Luke and rode on the tire swing with me. We were figuring out ways to add a swing to Hudson's fort that Rachel would be able to play on. Now that I'm thinking about it, I think I'll google it right now... :)

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Rachel's a little chunkier, she's gained 5 lbs! I have to e-mail the nutritionist and see if she wants to continue with the increased feedings. I also left a message with the neurologist's nurse (who is awesome) that the Klonopin doesn't seem to be cutting it for her now that her weight has changed.
Therapy went well, they did the usual stuff. Now that Rachel has school for three days out of the week we're going down to only one day of therapy. Rachel is going to be really busy!

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