Rachel Nyberg's Website
   

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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Spam 
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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Sicky 
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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New sneaky trick 
The last two days at school Rachel's been having fun messing with Wendy. When Wendy leaves her side or is looking somewhere else Rachel lifts her head carefully out of her headrest and sets it on her shoulder (so she doesn't block her trach). She did it on the ride home 4 times! Finally Wendy told her if she did it again she wasn't going to put her head back in the headrest for her, so Rachel stopped.

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School fun 
Because there were so many kids in each of the classes they're making a smaller kindergarten class. For the last three weeks Rachel's been having a lot of seizures in her regular kindergarten class. She's either tired, the room is too bright, there are so many kids, or a combination of the three. We had to come up with something because the last two Thursdays Rachel came home early because the seizures were so constant. So this will be perfect, she'll be in a smaller class and it will be on a different side of the building where it's not as bright. They tried it out today for twenty minutes and she did just fine.
She also had gym class by herself. She thought bowling was okay and she didn't like T-ball at all. Her gym teacher set a mat on top of three scooters and then laid Rachel on the mat. He asked her if she wanted to go around in circles and she said 'no' but she wanted to run! So the gym teacher ran around the gym with Rachel and each time he stopped to ask if she wanted to be pulled around some more she said yes. Finally he stopped and laid down and said he couldn't run anymore, he was too tired. Then Rachel started yelling until he started pulling her around the gym again and then she was all smiles again.

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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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Photo 


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

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