Rachel Nyberg's Website

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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Fully Staffed 
I think for the first time in three years, pretty sure anyway, we are fully staffed with 4 PCAs and 3 LPNs. To consider us fully staffed I usually figure we need about 3 of each for availablility but this is great!

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Busy, but not much going on ? 
We're very busy now that summer is here but Rachel doesn't have school and has only been back to therapy once since her break ended at the beginning of June. We've hired 2 new PCA's and are looking for a part time LPN so that's been keeping everyone busy as well. Rachel's always interested in new people. She'll sometimes pretend to sleep but peeeek over at them.
She's actually starting to look a little pudgy so I'm going to talk to her nutritionist about lowering her feedings a little bit.
Luke was helping her sit on the edge of the couch with her feet on the floor. Her tone is better so that although she can't balance she was able to hold herself up straight for a while and she looked so big!

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Happy Birthday Rachel! 
(Rachel's still excited it's her birthday.) She paid very close attention to her presents from Shelby this morning and later this afternoon we're having more friends over. She's going to be all partyied out pretty soon!

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Thank you to everyone who was able to attend Rachel's party! Rachel was excited the entire weekend for her birthday. That morning she woke up at 4am! She was smiling and chatting all Saturday and very smiley today. Her actual birthday is on the 10th so she's not quite five yet!

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Birthday Party next Sunday 
Rachel's birthday party will be at our house at 2 pm on Sunday, June 8th. Feel free to drop by and say "Hi!" if you like.

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Crabby, crabby 
We had a great weekend but Rachel was crabby and very vocal. Luke asked "Does your tummy, ear, arm... hurt?" And she'd blink no to all except she said her ear hurt at one point. But it might have been because she keeps turning her head and squishing it into her headrest. She'd have a fever or be even more crabby if she had an ear infection.
Grandma and Grandpa helped us plant all of our gardens on Sunday and she was a little happier outside but we just can't find a good hat for her. Right now it's must not in fashion for girls to have baseball caps because I couldn't find any. She needs one to shade her eyes so that she'll open them outside. She still is very sensitive to light outdoors. Even though we were promised great weather on Sunday, Grandpa got Rachel inside just in the nick of time before it started pouring rain.

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Kaleigh's got it all figured out 
When Kaleigh wants to get out of her playpen first she calls "Dada!" Then when that doesn't work she starts fake coughing. She must figure since Rachel gets attention every time she coughs that it will work for her too. Smart little stinker for only one and a half. ;)

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Yesterday Wendy and I brought Rachel to school to meet a Dynavox rep to go through the process of proving and documenting what Rachel can't use so that we can prove that she needs an eye gaze device like the myTobii. (Dynavox is also coming out with one soon but it's unknown when.) Because this is such new technology it's going to take a lot of time and paperwork to prove the extra expense is necessary.
If we got a device that required her to push a switch, she'd be exhausted and frustrated by the end of the day. Even a device at half the price isn't worth it if she won't use it.
Rachel was really watching the screen and did well tracking the pony running across the screen. Pushing the button wasn't consistent but that's what we wanted to prove. One screen had the two options "Ta da" and "Go Wizard" if she picked "Ta da" it made a 'ta da!" musical chord. If she picked "Go Wizard" a wizard went across the screen and turned a dragon into a unicorn. This time we were having her blink twice to say when she wanted to have Wendy push the button. Everytime the computer said "Ta da" she blinked twice and when it said "Go Wizard" she'd very deliberately blink once or try not to blink at all. So it was obvious, even to the rep who had never met Rachel before, that Rachel knew what she wanted.

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