Rachel Nyberg's Website

Happy Birthday Rachel! 
Rachel turns 6 today! Happy Birthday Rach!

(We should also be finding out if she's approved for her Eyemax system anywhere from now up until another 4 weeks.)

Update: Luke's been trying to ask Rachel what she wants for her birthday. After blinking "No" for everything he jokingly asked her if she wanted a rock. She blinked "Yes".
"Do you want me to paint it?" he asked.
"No" she blinked.
"So you want a dirty old rock out of the garden for your birthday."
"Yes" she blinked.

Sigh. ;)

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Summer Vacation 
Rachel's completely free for the summer. She has a break from therapy and school for a few months. For the first time in four years Rachel is without schedule.
She still seems to be fighting some illness. Once her antibiotics started working with the last illness she was doing great but now she seems to have just a cold but she's been adding a fever to the mix every once in a while just to confuse us.

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4th Anniversary 
Rachel's been having a harder time with her seizures the last two days. She's on a new med that's making her liver worked harder so she processed her dilatin too fast and her levels were way too low. They drew up a lot of blood work yesterday and we should find out the results and med changes today.
I'm also not sure if it's allergies but she's extremely gunky and sneezy even with her allergy med. Last night she spiked a really high temp and barely slept a wink. Not sure what's going on if it's just a bunch of little things all together or if there's something bigger going on but keep her in your prayers today. Thanks!

On a better note, the paperwork for her Dynavox is going to be submitted this week and we'll find out in 6-8 weeks if she gets one.

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Dynavox eye gaze 
Today Rachel was amazing with her Dynavox!!! She has one for a 30 day trial. When she first got to school she went through each of her eight friends and said "Hi" to each of them, using their names that Wendy had put into the computer the night before. Then one of the students said, "Hey! Rachel's talking!" and so they all ran over to her. She went through the screens and said, "Mine, back off" So all of the kids backed up. Then she said, "Look, don't touch." Later Wendy had turned away and she heard Rachel say, "Hi Jordan" and when she turned back around Jordan was the only one standing there. There aren't any pictures of the kids on the screen so that means she was able to read his name and could tell the difference between his name and the names of the other students.
Then they had circle time and her teacher asked for words that started with an H. Rachel started flipping through through the screens quickly and then found 'helicopter'. Later when she had a seizure she said, "That stinks." We're so excited she's finally able to express herself!


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Two Front Teeth 
A couple of weeks ago Rachel lost her two front teeth. We also have added a new seizure med to try for four months and if she reacts ok then we'll slowly wean her off of her dilatin. If she's able to be off of dilatin then she won't have to put up with some of the side effects such as larger gums. With the addition of the new med we've been noticing stronger seizures but it might be following her trend of having fewer and fewer seizures but the couple that she does have are stronger. That's just with the addition of the new med and we haven't started reducing the dilatin at all yet. So we'll see how it goes and hopefully it works.

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Feeling better 
Rachel's feeling much better but she's a little crabby now. I think she wants to go back to school. Although we did send her to therapy we're letting her recover even more before we send her back to school.

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Starting to get better 
Her fevers are definitely gone and she's not working so hard to breathe. It's now more like a really, really bad cold. Luke asked her yesterday if she could breathe better and she blinked yes. Thanks for your prayers everyone, she's still not doing great but at least we can see that she's slowly getting better.

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Still sick but at least we're home 
Rachel's been sleeping for almost the entire last 24 hours. We have antibiotics in case it is bacterial and neb treatments to help her get the gunk out of her lungs. So now we have everything at home that the hospital would have done for her and we're feeling a lot better about it now that a Dr. has checked in on her quite a few times. Please keep praying, she seems happier to be home but still has to work hard each time she exhales.

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Hospital Stay 
Rachel's in the hospital with something repiratory and viral. Could just be a really bad cold but with Rachel it's that much harder for her.
We're still all trying to decide if she can go home or not because she still has to work so hard when she's breathing. I'll try to update soon but so far it looks as if we'll stay another night. Keep her in your prayers. Thanks!

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Not sure how it got past the filters but a bunch of spam started building up in the comments. Rachel seems to be doing a little better.

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Rachel was doing better from her stomach bug but now she's got something respiratory going on. We talked to her Dr. and it doesn't sound as if antibiotics would help, just doing more of what we're doing. We usually hate to bring her into the hospital because at home she has one on one care from nurses who know her so we like to try to do as much as we can at home.

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Rachel's sick 
Sorry about the lack of updates. The PCA's leave before I get home and everyone is so busy with school. Rachel's really liking school but a couple of days ago she came down with a stomach bug. Keep her in your prayers, thanks!

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Merry Christmas Everyone! 
Rachel was so cute in her Christmas program this year. At the beginning of her songs we could see her start to sing along. We asked her if she was going to become a famous singer and earn a million dollars. She blinked "yes", Luke asked if she was going to give it to daddy, she blinked "no". He asked if she was going to keep it all and she said, "no" then he asked if she was going to share it with mommy and she blinked "yes". ;)

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Eye gaze computer 
Last Tuesday Rachel had a great speech therapy session trying out the eye gaze computer that Dynavox has come up with. She did great! She kept telling her therapists and PCA's "Look, look" and "I want it, it's mine" when referring to the computer. Then she kept asking for Luke to give her kisses (and every once in awhile a hug). Pretty soon we should be borrowing one for a 30 day trial.

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Busy month! 
Sorry for the lack of updates! I meant to update with pictures from Halloween but now I didn't want that to continue to hold up posting just to wait for when I have time to upload the pictures.
Rachel is still having a great time at school and it now attending Kindergarten for a full day on Thursday. Before she only went for a half day. She really likes the music time.
Halloween at school was fun, Rachel was a princess and when they went 'trick or treating' from room to room instead of candy, they had little things that Rachel could actually use/enjoy like bubbles, sidewalk chalk, little beanie babies, and things like that. It was so thoughtful!

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