Monday, January 4, 2016

Hold on to Your Hats, It's Going to be a Bumpy Ride

After three solid days of being in a positive, happy mood, the wheels fell off the wagon today, with the horses running off in separate directions over the hillside, never to be seen again. Mira was a complete mess all day today. She started off with breakfast looking happy and content, but after having a huge TC (tonic-clonic) in her bed mid-morning, everything took a turn. She began crying and wailing in her bed the rest of the morning and the entire afternoon. Nothing would calm her down - no amount of bottles, walking, or resting in her bed would help her decompress. The wailing subsided, albeit very briefly (as in 15 minutes) by the time I got home from work and she had a few bottles for dinner, enough to give her (and everyone else) a breather from the crying. Minutes later, she was back at it, tears streaming down her face, wailing at max capacity. We again tried walking, but she detested it, so we put her back in her bed, which completely set her over the edge, spiraling into an extended frenzy of crying and wailing. She went solid for about an hour, until we finally gave her a half tablet of Xanax, as Trazodone does nothing for her in these situations. She continued on for another 30 minutes and has just now, finally stopped. It's now 9:00pm and I'm sitting here thinking, what the f*^k happened?

This has always been, and I have no doubt continue to be, a bumpy ride. Mira had such a great stretch of awesome days and this feels like a cold bucket of ice water over your head. We didn't make any dietary, vitamin, or medication changes in the last 3 or 4 weeks. She isn't constipated. She doesn't seem overly tired. So what is it? Do we chalk it up to 'just being Mira' or 'welcome to catastrophic epilepsy' or what? Either way, going through this journey is so completely and utterly exhausting sometimes.

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