August 15, 2011


I have a different Segev now.  Due to the eternally changing landscape of his condition, the pain and uncertainty, I have made changes to one of his four Anti Epileptic Drugs (AED's) and the fourth, the ketogenic diet, has been temporarily suspended.

Therefore there are more small seizures; staring, or gelastic seizures or where he locks his mouth open in a grimace, or can't stop yawning. There are more medium seizures, his "going to sleep" seizures where there is some flailing, stiffening, holding of breath.

There are also more large seizures, sometimes being provoked by the "going to sleep" seizures, sometimes coming in the middle of the night or from moving him from the couch to his bed, turning blue, rapid eye movement, tongue protruding, purple, then jerking.

But this Segev is also awake, reacting, showing expressions on his face that he has never shown previously. Emotions seem to take form for just a few seconds.  His smile seems tinged with understanding by the activation of a few more facial muscles.  When spoken to his reaction is quicker, actually varied, even involving slight hand movement. He seems to lower his eyelids (he never blinks) as a response with increased frequency.

These changes are a trade off at best and he has been on this exact combination of AED's, at this exact dosage before with no such outbursts of consciousness, but I'll take it for now.
I kid you not when I say I bathe in it, exactly like the beautiful sunshine with its warm, no, stinging glow.


  1. a burst of blinding light; certainly a cause for joy and hopefully an omen of good things to come...

  2. To feel like there has been a subtle awakening of senses that have been contained is a huge cause for happiness. To know they exist and can present themselves is such a milestone. I often yearn for more indicators of feelings and understanding. I know so much more is happening that I can't interpret. However, I also know that I can recognize the most subtle things that go unnoticed by others. We have a unique connection to their messages and to see them attempt to interact has to make it the best day ever.