I’m Prepared to be Disappointed, but That’s Okay.

First thing this morning, Aria climbed over me and rolled right out of bed, taking off towards the kitchen. Startled awake, barely coherent, I grab the eye glass case off the night stand that holds her rescue dose of CBD, and chase after her. The only thought going through my head “she’s going to have a seizure in the kitchen.”

She didn’t; she was bright eyed and bushy tailed, leaning against the dishwasher, smiling, waiting for me to open it so she could start her daily chore. I felt so bad that there weren’t any dishes for her to empty! We made breakfast, and started our morning routine, which usually is just me sitting on edge for the first few hours she’s awake, waiting for a seizure to happen. Today it didn’t.

I had stayed up until her 1am dose last night, and she hadn’t had any seizures before that, so I was anxious to watch those six hours of video this morning. If you read my post from yesterday, I had increased her dose in the afternoon, after staying at the same mg/lb for five weeks.

 

SAMi3 Alert Monitor

Well, I watched the video feed, holding my breath, and fighting off the elephant, kitty cat, lion, and cow that kept climbing all over me begging for attention (Aria has become a regular zoo and loves when I “try” to guess what animal she is, haha). I got to the last video when she popped out of bed, and made sure I didn’t miss a seizure upon her waking.

No seizures.

I put the monitor down, and rangled in the lion that was attacking my leg. That lion got a thousand hugs, kisses, and tickles until she laughed out a “stop,” or as she says it, “pop!”

I couldn’t believe it, and still all morning I was waiting for one to happen. Lunchtime came around, and then quiet time. There has been no such thing as nap time with Aria since she came off all the medications. I’ve always thought that was partially because she had all this new energy, and because she always had seizures that’d wake her and end her peaceful nap abruptly. The past couple months she’s been looking tired in the afternoon. We’re thinking her body is starting to level out, four months drug free, reregulating itself, so I started implementing some quiet time with a pillow fort and some books for an hour or two a day. Today she napped.

“What?!” I had been reading one of her favorite books, looked over at her, and she was asleep. “This is when it’s gonna happen. Her brain’s gonna make up for going 33 hours seizure free. Get the oil.” That was all I thought for the next hour and a half, holding my breath; but nothing happened. She woke up grumpy (when has a nap ever left you feeling refreshed? I always want more Z’s!), I could see the glint in her eyes of a misfire. I grabbed the syringe, told her to say “ah,”  as I slid a dose of oil under her tongue, and then, it was gone. No seizures. I breathed.

Aria is now 40 hours seizure free, and asleep, but I’m not holding my breath.

She’s been asleep now for almost an hour; seizures while she sleeps are practically inevitable. Though a repeat of last night would be nice, I highly doubt another seizure free night will occur just yet. It is, however, quite nice to see such an immediate response to a dose increase after a couple months of no response!

As I said yesterday, now it’s just time to observe and practice patience.

Until next time, Cheers

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3 thoughts on “I’m Prepared to be Disappointed, but That’s Okay.

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