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Friday, November 20, 2009


I got off track. I lost focus for a second. From the beginning I had planned on moving forward, trusting in God first and all others second. I vowed I wouldn't pay attention to EEG's and MRI's and Neuro's and I would just let Christian lead the way.

Well I was given the test and I didn't get a very good grade. I need a retake!

It turns out that what I thought were seizures didn't even register on the EEG as a seizure. Wait, it gets better. Christian's EEG did register a single 8 second seizure, but it was while NOTHING was physically present (i.e. body twitch, jumping or rolling eyes, shaking, etc). Everyone say it with me...WHAT THE ****?!

It was then that I realized that I'm not here to figure this out. It doesn't make sense. A person can have a full on convulsive seizure and absolutely nothing will register on an EEG. And the opposite is also true. The problem with me is that I need to understand things to come up with a plan. And this is not meant to be understood. And now I've put too much energy into worrying about something I can't understand or control.

More fun facts about seizures...seizure activity isn't necessarily a seizure. It means that brain waves are disorganized. Well, duh! He has a brain injury, what else would they be? And he gets this disorganized activity while sleeping. His transition to being awake is fine and while awake there is no where near as much disorganization. Oh yeah, and EEG's only tell us half the picture.

We increased the medication and the doctor asked if I could tell any difference. Well now that I know that what I thought was a seizure didn't register but what was a seizure didn't physically manifest, am I really the best person to ask?

Okay, so I'm done. Enough energy has gone into dissecting this issue and trying to understand. It's now all gibberish to me and I'm back on track. We can fool around with medication, although I've got a few other things I'm looking into. But I will not let this take us down or hold us up. Christian is on a mission. He's making steady progress and despite having to go under general anesthesia, getting his tube replaced with a Mic-Key button, getting an EEG, messing with his meds and the side effects that come from messing with meds, and being mildly congested all within this past week, Christian is still making progress. He ended this week with a great therapy session and he worked HARD. This is just a reminder that he is working hard to recover and how dare I loose focus.

I'm focusing on Christian. He'll show us what he can do, he shows us time and time again. God has given him strength to pull through all the obstacles that have come about. He's given Christian strength and opportunity to keep going and I'm privileged enough to witness this miracle. So to the seizures, seizure activity, EEG gobbledy gook I say - BAH! We're over it. This pity party is shut down.

There will be more progress and there will probably be some setbacks. It's inevitable. We'll get through it and we'll get Christian through it. Sometimes this process is excrutiatingly...painfully slow, but it's moving and I don't want to miss it.

God heals.


gavman306 said...

You're an amazing mom!!

Anonymous said...

Right on! THAT'S my princess back! Gramma loves you.

Calicomama said...

I have migraines since childhood (I am now 39) and when I was 20 or so, I got an EEG, which showed "abnormal" brain wave activity. Ah ha, they thought--seizures and thus the migraines. I spent 1 semester of college drooling thru my classes b/c the anti-seizure meds made me completely out of it before I said "this is NOT worth it" and stopped taking them. 24 more years of 2x month migraines and they were finally (temporarily!) "cured" by pregnancy. My point is that my EEG revealed something weird and MDs thought it MAY be seizures and 27 years later, 1 BA, 1 MA, and 1PhD later, and 2 kids later, I am fine. I think the brain is one of the greatest mysteries--and wonders--of the world and it's not always for us to understand how it works.

sunflourchic said...

you are amazing. you will continue to do the right thing for christian and he will continue to amaze us. big hugs!

Anonymous said...

You got that right darling! Some things just aren't meant to be understood. I came to terms with my own son's disability after several years of off and on pity parties. I realized that it is my job to make sure that he enjoys and lives life to the fullest and to advocate for him with fierce determination so that he has every opportunity to be happy and live his life to the fullest. Keep fighting the good fight and leave the bad fight to others who do not have your strength and spirit. God Bless Christian, the little Superman.

Tracy said...

Amen, sister!!!

Jendioguardi said...

Good for you Shauna! You are one solid mommy! I commend you and will continue to pray for Christian's healing. HUGS!

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