Monday, January 28, 2002

Day 22

I haven't posted in a few days because things seem to be getting worse. They have drugged her so much this weekend, it's crazy. She is now taking 2 drugs, Phenobarbital & Dilantin.

I just called the hospital to see how she is doing & this is the first time she is actually alert since Friday. The test that she had at the other hospital on Friday confirmed that they are truly seizures & that her brain is causing them. They also say that this likely started in the 2nd trimester. During the migration of the neurons, the brain did not form correctly. So basically the wires are crossed & since they don't know how to communicate it's triggering seizures.

We have no idea what this means long term. The doctors say that most of her brain is malformed. Talk about a complete change in life for her parents. As if parenting wasn't going to be hard enough already. She is absolutely perfect in every other way....why did it have to be the brain? It's heartbreaking.

They have scheduled her 4th EEG (looks at the brain waves), to see what kind of changes there are now that she is so drugged up.

There is also supposed to be a specialty neurologist to see her today (I think they have their wires crossed, because it's supposed to be a phone call.) Guess they'll figure it out, because they're right and I'm wrong. ARGGGG

Anyways, it's not looking good & we still don't really have any is going to be a one day at a time's up to her how she will turn out & how much she will be affected by this.

So that's the good news on my end.

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