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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I don't update often and really, not a lot changes from day to day. It's our new "normal". Even the crises that come and go have reduced in frequency as we've found a better homecare company, nurses who don't stir up drama, and I've gotten the hang of the paperwork, doctors visits, meetings, specialists, social workers and calls to the medical equipment company that the suction machine isn't working again.
These past couple of years she's had no hospitalizations or anything even close to pneumonia. (Which usually confuses specialists, she's unbelievably healthy.) We're slowly adjusting her seizure meds so she can be more alert during school. The kids in her class love asking Rachel questions and there's a waiting list of who gets to read to her each day.
So, no news is good news. No surgeries or major illnesses - so if I don't update before the ten year anniversary of her accident, it'll be a very good thing.
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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 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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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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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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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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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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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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