Some brand new great news - last night we just set up Rachel's newest Dynavox! The previous one was first generation technology and became very frustrating to use. She's very excited to try out the new one and we're excited to hear more of what she has to say.
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We've been home for a couple days and Rachel's doing well. She's comfortable and only needed Tylenol and Ibuprofen. She's still a little tired, but happy.
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Rachel's surgery lasted four hours and she's now resting comfortably.
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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 is 7 today! [ 2 comments ] ( 635 views ) | permalink | related link
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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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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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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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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Rachel is now vaccinated against H1N1. Whew!
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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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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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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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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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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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