Huh?
Yes, huh? That was the combined effort of conversation that Dan and I could muster as we left the doctors office having been told Zack's EEG results.
If it were a cartoon, we would have large glowing question marks above our heads, over-emphasising our complete inability to understand what was being explained
You see, the EEG results, for once, are positive. The little twitching episodes that we thought were seizures turn out to be not seizures at all. Okay he has the usual abnormal brain patterns, but hey, who doesn't when they've suffered a massive brain injury. But there is no suggestion that what he has been continuously doing for a couple of months is epilepsy.
Hurrah.
Huh?
So what is it then? Well it could be some form of dystonic movement, whereby the body jerks as a result of abnormal brain activity.....see above. Or it could be to do with his reflux. Oh?
Agreement all round was to up his reflux meds and see how he goes. Keep him on his two epilepsy meds for now whilst he is stable and see what happens.
He hasn't done it for a while now. In fact, he hardly has any seizures. I mean the odd pattern of a few if he wakes up in the early hours but nothing worrying.
Our plan now is to get him back down to one medication for his epilepsy. But I still can't figure if what we were treating him for in hospital was seizure activity or something else.
Again.
I say huh?
This isn't my blog, it's Zack's. Zack arrived here seven weeks early, he had no heartbeat and wasn't breathing. He suffered catastrophic damage to his brain, he has cerebral palsy, problems with his hearing, vision and feeding. Our lives are both challenging and extraordinary. He is a gift. I hope that for whatever reason you find yourself reading this blog it can go some way to help those in the same situation and some way to remove the cloak that covers parenting a child with disabilities.
Thursday, 31 January 2013
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