Rachel Nyberg's Website

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.

[ 1 comment ] ( 4 views )   |  permalink  |  related link
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!


[ 11 comments ] ( 161 views )   |  permalink  |  related link
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.

[ add comment ]   |  permalink  |  related link
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.

[ 1 comment ] ( 56 views )   |  permalink  |  related link
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.

[ add comment ]   |  permalink  |  related link
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.

[ 3 comments ] ( 156 views )   |  permalink  |  related link
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!

[ add comment ]   |  permalink  |  related link
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.

[ 12 comments ] ( 887 views )   |  permalink  |  related link
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.

[ add comment ]   |  permalink  |  related link
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!

[ add comment ]   |  permalink  |  related link
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". ;)

[ add comment ]   |  permalink  |  related link
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.

[ 2 comments ] ( 24 views )   |  permalink  |  related link
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!

[ add comment ]   |  permalink  |  related link
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.

[ add comment ]   |  permalink  |  related link
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.

[ add comment ]   |  permalink  |  related link

Back Next