Tuesday, March 5, 2013
Well this is different
I am almost afraid to say it out loud, because we don't know how long it will last. But I have to say it out loud, because this is crazy. Those seizures we have seen every day, multiple times a day, for the last 880 something days have been missing for nearly a week. We can't quite say we have seizure freedom because they seem to have been replaced by something different. But these new seizures must not be nearly a gnarly because this new child is unlike the child we have known for 880 something days. She smiles, in response to things that should make a child smile. All day long. She makes eye contact like she is present and paying attention to her world. The other day she laughed. She was hitting her wind chime and the sound must have been funny. I never dared to dream of a laugh. And because we can never fix something without breaking something else, she also doesn't sleep. But there are way more potential solutions to insomnia than there are to intractable epilepsy so we will take it. We started a new medication 3 weeks ago that must be working, or who knows what is going on really but it happened so fast. We were so ready to give up. We were so tired and so discouraged and so sick of cowering under the big dude standing over us with the big stick that we were really very ready to give up. I feel like she is telling us to keep fighting. And we really don't know how long it will last, but now we know it is possible.
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4 comments:
How beautiful! What a big stride for Mya!
AMAZING! Go Mya :)
What a cutie!!!!!!!
Yeah! How great. A smile is wonderful, but a laugh is way better!
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