Wednesday, April 29, 2009

My Brain Is Dizzy, Part 4.....

We were beginning to see the light at the end of a very long, dark tunnel. FINALLY. Everyday second, every minute, ever hour, every day, every week, and every month that came and went without a seizure brought such confidence to her and to us. It was as if our lungs were beginning to breathe oxygen again.

I eventually went back to work. Kylee was fine with this. I think she may have been tired of having me watch her every move 24/7. I hadn't planned on it, remember, but God had other plans for me. I love that He knows what we need, when we need it. I received a wonderful offer to come back with a promotion and a raise. =) God is good.

We saw the Neurologist in April of 2008. He had told us there was a possibility she could outgrow her seizures, but since he didn't know the source he couldn't tell us for sure so he repeated her EEG.

He also had told us he may consider a trial off her medication to see how she did. He said he wanted to do it in soon so if she failed the trial he could have her regulated again before she started to drive. In our state, you have to be 6 months seizure free before you can drive.

Now, I have to be honest with you, I was not happy hearing anything about a trial off her medicine. We had just gotten regulated and back to a normalcy. I sure didn't want to go back through what we had just been through.

I didn't say anything to him then. I figured when he brought it up as a for sure thing, I would share my thoughts then.

He also told us to watch for seizures as Kylee grew because her medicine is adjusted according to her weight.

She went 16 months, yes, 16 months straight without a seizure. We were so thankful.

August 27, 2008, her birthday, was her next seizure. Nice birthday present, huh? To be honest, we couldn't be too upset about it because we were so thankful she had done so well up til then.

I did wonder if the nightmare was starting all over again. That seizure was due to a growth spurt so he increased her medicine, to the dose she is currently on.

Because she had this seizure, He is no longer considering a medication free trial. Would it be weird to say I was relieved she had this seizure?

I was. I was relieved because I DID NOT want to take her off her medicine and I knew that discussion would be coming up soon. God used the bad and made it good. He's good like that, you know?

Her repeat EEG did still show a large amount of electrical activity.

My baby is doing wonderful. SHE HAS BEEN SEIZURE FREE SINCE AUGUST 2008!

The sassy spirit is back, in FULL force, lol. She is back to spending the night with her friends and going places without me.

We know God performed a work through her. No, He didn't chose to heal her as He could have, but He has used 3 tiny pills a day to control a very frightening disease. He has said "Peace, Be Still" to the storm that was raging out of control. He taught this Mom how totally helpless I was without Him. He taught me to depend on Him, to seek comfort from Him, and to call on Him. He taught me that He loves me no matter how big/small the problem may seem or how many times I question why. He taught me that He can hear each of us pray at exactly the same time, all over the world, yet He hears me as if I am the only one calling out to Him.

He has used her dizzy brain to change me. For that I am thankful.

=],

Gracie

3 comments:

  1. Well it sure took you long enough to finish this cliffhanger. =0) But I'm so glad to hear the ending!!!

    I'm so glad she's doing so well now. Have a great day!

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  2. It is true, you can outgrow seizures... I did. It doesn't lessen the horror of what she has to go through, though... I am SO glad that she has been seizure free since August 2008!!! She must feel so good about that!

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  3. She's a beautiful,intelligent and amazing child.You are so blessed to have her,as she is to have you.

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