Wednesday, October 31, 2012

Hospitals Smell Funny

Brielle's cerebral palsy affected her mouth most of all. That's why she can't talk, has issues chewing food, and can't control her own saliva very well.

She had surgery nine years ago to remove the salivary glands under her tongue (the ones that "fire" all of the time), but that did not help her drooling issue much at all. Usually when doctors perform this surgery, they also cut and cauterize the glands in the hinge of the jaw as well (the ones that "fire" when a person eats). However, with her eating issues, we were afraid her mouth would be too dry, so she only had the other procedure done. In the end, the surgery was not a success and Brielle had to go back on medication to keep her mouth dry.

Although she has been on the medication for years, the drug company stopped manufacturing it two years ago. We tried two other medications, but neither worked half as well. So, she hasn't taken any medication for the last year or so.

We had hoped that the drooling issue might improve as she got older or when she got her braces removed, but it did not get any better.

Although we could have the doctors go back and do the other surgery for the salivary glands in the hinge of her jaw, it's pretty invasive with a much more difficult recovery than even having wisdom teeth removed. Our ENT (Ear, Nose & Throat doctor) suggested we try using Botox injections in those glands to see how they react first. If the Botox works, then we know the other surgery would help and be worth while putting her through the difficult recovery.

After our health insurance company first denied the Botox injections (twice), we finally got it approved. When I told Brielle about the procedure two days ago, she cried for about 10 seconds. She is so fearful of anesthesia, with good reason, since she's been under nearly a dozen times for one thing or another. Then she signed to me, "I big girl. I brave." My heart broke.

Ready for her procedure!
She had the procedure done yesterday and she was such a trooper. She did great through the intake, talking with the doctors and nurses, getting on the gown, and getting on to the gurney. She only panicked when we got to the procedure room. Instead of an empty surgical room, it was a radiology procedure room with lots of big, scary looking equipment and machines (they used ultrasound to guide the needle for the injections). When they wanted her to scoot herself over under the big x-ray machine over the table, she just freaked out. We had to move her over ourselves and she cried and scrambled until they got the mask on her and she drifted off. I just hate seeing her like that.

Doing ok!
In recovery, she did beautifully. Usually she cries hysterically and is nauseous (effects of the anesthesia). But, we had a great anesthesiologist who gave her several medications before and during the procedure to help out with both of those issues. When it was all over, she was still one very sleepy girl, but she managed to give me a sleepy "thumbs up".

Once she was able to drink a little water and get her sea legs back again, we headed home. Brielle slept the entire way.
Still so sleepy!

I really hate having to put her through these things. It truly breaks my heart. But, I am so proud of her!

The doctors said we might be able to see a difference in her drooling on the first day and we did! It was at least 50% better. The full effect won't happen until two to four weeks from now, so we'll know more then. The Botox should last about six to nine months. After that, we'll need to make a decision about the other surgery. We wouldn't put her through Botox again for this, but this will show us if the surgery would be worth it for a long term solution.

(And not to worry, the human mouth has lots of little saliva glands in the tongue, cheeks and roof of the mouth. So, she's got plenty of saliva to use when eating.)

Thanks to everyone who shred their love, good wishes and prayers for us! We'll keep you posted!

Botox isn't just for wrinkles! -- Botox has been around for decades. Cosmetic doctors only began to use Botox for wrinkles in about 2002. Prior to this, Botox was most often used to relieve muscle spasms of one sort or another, including for patients with cerebral palsy. Brielle has had Botox injections three other times for her legs and right arm before she finally had surgery on her right leg five years ago. So, this wasn't our first experience with Botox!

Wednesday, October 17, 2012

Breakfast Anyone?

In our house, we celebrate even the smallest successes. Brielle has had a major accomplishment in the last week and we are definitely celebrating! She's able to make her own breakfast!

Ok. Well, she can do 95% of it on her own, but that's big! How did that happen? Her mama got out of her way! (Silly mama...)

With just a little instruction on motor planning for some of it, Brielle can do almost everything. (Those darn tight lids on her drink supplements are about the only thing I still have to do.)

Carefully pouring...
She does it all! From pouring the drink...

Yes, she eats THREE big donuts
every morning!

Breaking up the donuts...

Two hands carry the feast to the table!
Carrying it all to the table...

Yummo! Meals always taste better
when you make it yourself!
Of course, eating it is the best part!

Washing, washing, washing...
Into the dishwasher...
But, she also washes her own dishes....

Clean, clean, clean!

And wipes down the table....

How about that! As proud as I am of her, I think Brielle is even more proud! :)

Friday, October 12, 2012

A Sleepover (of Another Kind)

Whenever Brian travels, I let Brielle sleep with me one of the nights he is gone. If he is gone one night, she sleeps over that one night. If he's gone a week, she still gets just one night. It's something she loves and I wish I could say it's because she gets to sleep with me. But, I know it's because of the evening festivities instead.

No Dad. I'm not eating popcorn
on YOUR side of the bed!
It's the only time she gets to eat popcorn and drink Sprite for dinner. Brian always teases her not to eat popcorn on his side of the bed because of the crumbs. But, Brielle just laughs and we let it be "our secret". Cooper is pretty good about being a doggie vacuum cleaner and getting up all of the pieces, so it's not really an issue anyway.

Home videos are better than
anything else that's on TV!

It's also the only time I let her watch old home videos. I usually watch with her for a little while and then let her watch the rest on her own.

Daddy does the Hokey Pokey
and he turns himself around.
That's what it's all about!

Last night, I caught a few funny, classic scenes. One was of Brian doing to Hokey Pokey with Ashley at her gymnastics class. What a good sport he was. Too funny!

Can't get enough of this show!
The excellent writing always inspires me
to write better myself!

While she watched home videos, I watched my favorite TV series and worked on re-writing another chapter of my book -- Chapter 7! I'm making excellent progress! (And, yes, I've seen the whole series at least 10 times, but it never gets old! I just get "lost" in the mythology! - pun intended!)

Everyone is all tucked in!
But is there room for Mom???
I'm really bad at getting to sleep without Brian home. I stay up too late working and watching TV. Last night was no exception. When I came to bed last night, there wasn't much room for me!

Brielle doesn't get sleepovers with friends, but she loves our sleepovers together. And sleepy cuddles in the morning are the best part!

* Want to read about the best sleepover ever? Find out who it was with!

* For more about the progress of my book, check out my recent post about it or follow the summary of how it's all been going!

Thursday, October 4, 2012

"Mad Libs" Revelation

From time to time, I discover something really interesting while homeschooling Brielle. Sure, I've learned things about history and science that I either:
a) ...never learned; OR
b) ...learned and had forgotten (which is highly likely)

Our "Mad Libs" page today
Well, today, during our Language Arts lesson, I had quite the revelation. We usually do a "Mad Libs" page to warm up. "Mad Libs" are actually a great way to review parts of speech and whole lot more fun than boring worksheet.

Do you remember doing "Mad Libs"? Maybe you did them on a car ride or at a sleepover. You don't know what the story or sentence is about. You just fill in something for the missing part of speech and then read it aloud to hear how silly the sentences get. Brielle always laughs at how ridiculous the sentences are.

We're working on a "Mad Libs" book with a birthday theme and today's page was a birthday card. The last line on the page was "a person in the room - female". We had already used "Mom", so she signed, "Brielle" to me. (Yes, we've been known to use "Cooper" - our dog - once in a while, too.) then I realized how the last line reads:

"Hugs and pillows,
Your Aunt Brielle"
"Your Aunt Brielle"

Whoa. Brielle could some day be an aunt. I had never thought of that. Duh. How could I not think of that?? Of course, Ashley could have children some day (although Ashley doesn't like kids much, she could marry someone and have kids). I have certainly thought of that, Ashley having kids. So, why had I never thought of Brielle being an aunt???

As I pondered why I hadn't thought of this before, I took a picture of the page and texted the picture to Brian. He had the same reaction as I did. "Wow. guess that is right, never crossed my mind either." Oh good, I'm not wacky for not thinking of this sooner.

I texted the picture to Ashley telling her I had never considered that one day Brielle could be aunt to her future children. Ashley responded, "Never thought of that??? I have. That's probably because it would be my"

Hmmm.... I guess this is something I should have thought of at some point. Well, now it's got me thinking. What kind of aunt would Brielle be?

First of all, Brielle would be SO excited. She just loves babies! And I think Brielle could be a good aunt. Just consider all she could teach a neice or nephew about life, fairness, and having a postive spirit? Those are important lessons.

I think I'll just keep thinking about that instead of thinking about what her neice or nephew might miss out on since Brielle is the way she is. Otherwise, it's just too depressing. Besides, Brielle won't be an aunt for VERY long time, if ever.

(While pondering all of this today, I also had the opposite thought. Ashley will never be an aunt. Another depressing thought...)

Who thought "Mad Libs" could bring on such a huge revelation???