Rachel Nyberg's Website

Early riser 
This morning Rachel got up at 12:30 am and wouldn't go back to sleep. At about 10 am Wendy texted from school and said that now Rachel's tired and cranky and having a lot of seizures (because she's tired). Not sure why she woke up so early but now they'll head home and she'll hopefully take a good nap. Must be something in the air at our house because Kaleigh wouldn't go to sleep last night. She just was wide awake and wanted to play.

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Pic from school 
Dina sent a picture from school. The other students love playing with Rachel, they like to put stuff in Rachel's hands for her to hold when they play in the kitchen. Rachel's been having a great time too.

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First full day of school 
Today Rachel had her first full day of her class. Her teacher wrote home a note that Rachel had a great time and she was able to participate more during circle time with all of her switches. Rachel was able to bring the Dynavox computer but it didn't have the eye gaze system with it yet. She had to push the switch when it got to the word she wanted it to say. It worked ok, but it's hard for her to keep up and it's not functional for school without the eye gaze part. We're just having a trial and still working on proving that Rachel needs an eye gaze system. She also has switches with phrases that have been prerecorded by her teacher just before class starts.
She loved singing with the kids, being on the playground with them and participating during occupational therapy. She got tired and a little fussy at two but then bounced back.

Thanks Dina for sending the note home!

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I found the cable and here is Rachel in the van ready to go to her first day of kindergarten!

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Camera USB cable 
Is missing so I won't be uploading pictures anytime soon. Sorry!
The other day Rachel was in her stander and watching 'Super Reader' on PBS the character on the TV was asking the kids to say 'D' and Rachel kept saying it over again. It's the one letter she can verbally say really well, she'll say "Da da" on purpose all the time. But this time she shortened it to just the letter D.

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First day of Kindergarten! 
Rachel had a great first day of school. I was waiting to update until I had time to upload the pictures but as life is a little crazy at home (we're finishing the basement) I figured I better just post something and can add pictures and extra details later.
Rachel loved school, she was so excited and talking that Wendy had to take off her speaking valve so that the teacher could finish speaking. They had circle time where the kids could ask questions about Rachel and I had already let her teacher know what I usually tell kids and that she's free to answer anything they ask. They helped her to participate in gym class as much as they could and during song time Rachel was very loud again. :) I'll hopefully get a chance to get more details from Wendy soon.

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Open House 
Today we went to Rachel's open house and met her kindergarten teacher. Rachel will be with her usual class two shortened days per week and one day of regular kindergarten for one shortened day per week. She'll have therapy one day per week so Monday-Thursday she'll be a very busy girl. Rachel was very twitchy when we got there and Wendy and her speech therapist are starting to think that she gets twitchy when she's excited about something. She only does it for games that she likes or if we go someplace fun.

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Jam packed day 
Lots of activity on Wednesday. Rachel had therapy and the rep from Dynavox (speech generating devices) was there to try out different switches and buttons. We actually needed Rachel to do poorly in order to prove that she needs a device that uses the new eye gaze technology. Dynavox is releasing their own eye gaze system that is the same as the myTobii in September and Rachel will be on the waiting list for a rental right away! Dynavox is a company that has been around for much longer and we have a much better chance of the device being covered. Plus they'll have a lot more software that's already designed for kids so I'm very excited about that. The images that we use on her communication boards (pictures velcroed to plexiglass) are taken from the Dynavox system so they'll be images she's already familiar with.
Rachel also had her Baclofen pump refilled today and Kaleigh was facinated and quite the little helper.

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Still routine 
Rachel's still have a great but very routine summer. We visited the neurologist and he upped a couple of her meds. She seems to be doing great and liking the extra attention from having PCA's in the afternoon now. At first I think she found it kind of frustrating but now she's used to it and getting a lot of her activities in.

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Fun Weekend 
We spent most of the weekend at a friends house. Rachel had a great time with all of the kids and taking a couple of walks outside. I feel bad when she gets bit by mosquitos but it's nice to see her have a little bit of a tan this year!

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For some reason everyone is really sleepy at our house today. Rachel took a four hour nap!! Kaleigh took a longer nap than usual but Rachel very rarely naps at all. Sorry, not much is really going on. Rachel was sleepy at therapy and didn't participate as much as usual.
My parents were watching the kids last weekend and Rachel got to ride the teeter-totter and the swing at the park. She seemed to really like it!

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Wendy is feeling better and Rachel never got sick. Thank you so much for your prayers!

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Rachel might be out of the woods? 
Kaleigh finally got rid of the fever but now Wendy had to go home today with a 103 degree fever. (Rachel's full time PCA) She's pregnant so the only thing she can take is Tylenol but she's allergic to that. Please keep her in your prayers over the next couple of days.
Rachel's still ok so far, thanks for your prayers, they're very appreciated. :)

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Kaleigh's sick 
Kaleigh has had a 101 degree temp for two days. Thankfully she's happy, not cranky but she does an odd 'startle' reflex when she gets too warm and will lose her balance. Even pre-accident Rachel had fever seizures so we're concerned that Kaleigh might start doing that too if she gets too warm. It's difficult to keep Rachel's temp down so please pray that Kaleigh will be feeling better soon and that Rachel could avoid it altogether.


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Circus Fun! 
Rachel had a great weekend we spent a lot of time outside and the circus was in town! On Saturday we went to the show and Rachel watched the performers closely and smiled almost the entire time.

Then on Sunday Rachel got to ride the elephant!

She also enjoyed the July 3rd parade but managed to sleep through a marching band!

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