Saturday, March 27, 2010

It seemed so long ago that this date was set. March 29th seemed so far away. It is upon us Monday and donned with games, food, treats and books she will be admitted to Video EEG monitoring until they have a complete look at her brain. She will also lose all privacy for a few days. Not that she has had that much since last year. But this is recorded. Nose picking, scratching, eye rolling at people's jokes can be recalled at any moment.

Each time we are admitted our list of what to bring grows. Soft Kleenex, baby wipes, water bottles.....they all join the trunk that we will lug to 3R. Along with this is the raw emotion from lack of sleep - the trepidation at the invasiveness of what this might mean - and the hope that the EEG confirms what the doctors already believe so that we can move on with a plan.

But, a Lobectomy is a serious decision. A Lobectomy means they will take out part of her brain. A Lobectomy is irreversible. The weight of that decision is hard for us all. There are so many questions we dare not ask - but hang in the air. Could she change? Could this hurt her? I stop right now. I have to. I cannot think that far ahead. I have to survive this next week first. I have lots of distractions. I will be the purveyor of healthy food, the challenger of games, and there when she will have a seizure or needs a hug.

I know that I do not really know how much she has gone through. I cannot possibly walk in her shoes. She sat through all the discussions. The unspoken fears sat with us. We are just facing today right now and the list that needs to get packed. I will post the results - and maybe a few really embarassing pictures for your viewing pleasure. Of course as I say this I realize I am on video as well so I better watch where I scratch too!

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