Rachel Nyberg's Website
   

Doing great 
Rachel's surgery lasted four hours and she's now resting comfortably.

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Surgery 
On Friday Rachel's going to have surgery to have her main salivary glands removed. She'll still have hundreds of smaller glands but the amount of her saliva should reduce by 80%, making it much easier for her to swallow and protect her airway. This will have the added benefit of her being able to pay more attention in school now that she won't have to concentrate so much on breathing. Please keep her in your prayers on Friday and over the weekend, we can tell she's pretty nervous.

Thanks!

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Rachel's Birthday Party 
Rachel had a great birthday party!



Each time she didn't want to participate in something (e.g., picture taking) she went to sleep so she ended up wide awake watching her new iCarly movie with a huge smile on her face until late, late, late.
She loved everyone singing Happy Birthday.



Belle cake, funfetti cake (so she'd have polka-dot petticoats) with homemade butter cream frosting.



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Happy Birthday! 
:) Rachel is 7 today! :)

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Med Update and Surgeries this Summer 
After two weeks without any dilatin the side effects are wearing off quickly. But her seizure activity has picked up so she's going to start taking Topamax. Her neurologist also gave us the go-ahead to make an appointment with the neurosurgeon to have her baclofen pump taken out. We had visited an ENT at Children's Hospital down in the Cities and he suggested an operation on her main salivary glands in order to protect her lungs. So next week I'll start making calls to see if it's possible to perform the two surgeries during the same session so that Rachel doesn't have to go through two recovery periods. We'll work on getting that done this summer before she goes back to school.

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Neuro appt 
Don't fall off your chairs, I'm updating two days in a row! Rachel is now going to be weaned off of dilatin by the end of April and now has saline in her pump instead of baclofen! If she doesn't have any issues with increased tone we can schedule surgery to have her pump taken out after her next Neuro appointment in October.

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Circle Time 
Today in Circle Time at school Rachel was in charge of the calender. She used her Dynavox to correctly say the month, what day it was, and what the weather was like outside. The kids also do an activity based on the letter of the day. If the letter of the day is 'B' and the teacher gives the student the word 'cat' the student is supposed to say the work 'bat'. Up until now Rachel's been unable to participate. When the teacher almost skipped her as usual, Rachel said, "Wait, let me". Then when she was given the word 'call' she said 'ball' right away.


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Dynavox! 
She has it(!) but we're still working on the settings and trying to figure out the right way to configure everything. It takes a while to adjust the mounting system so that her eyes are lined up correctly.
She was able to use it a little earlier today and was more open to using it when some friends stopped by. She'll have speech therapy on Monday and we'll be able to personalize it even more. We'll be able to put in pages and words that are specific to her. Very exciting!

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Dynavox in... but in pink 
So we're sending it back to get the silver color she wanted. I was tempted for a couple minutes to just keep the pink one. But one more week of waiting is probably better than looking at really ugly pink for years and years on end.

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Vaccination 
Rachel is now vaccinated against H1N1. Whew!

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Only a couple more weeks 
Blue Cross approved her Dynavox but MA denied it. Now that we have the denial we can go ahead with everything and finally have it sent! It should be about a week but at the longest it could be a couple more.

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Approved! 
Rachel was approved for her Dynavox! She should have it within a month. We've been working on this for at least two years, it's so great that it's finally happening. Rachel regaining the ability to express herself is going to be incredible.

:)

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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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