Juggling update
Friday I took Annie down to the neuro-nurse to discuss weaning off of zonisimide, so that we could soon be on 3 seizure meds, instead of 4. And that's the plan--one less pill a day each week, until she's off of it--probably 6 weeks. Of course, right after we got back home from our appointment, she began with the gagging/nausea/vomiting, making me feel like maybe I should have stayed at the hospital. In fact, Bill and I were debating whether to take her back there for the rest of the day. The juggling act we had to do with keeping her hydrated, keeping the stomach contents in with zofran, (how much of this are we allowed to give per day??), trying to help clean her gut out with--well, you don't want to know this much information--it was a very interesting day.
But the good news is, Saturday the sun came up, and with it, a refreshed--if somewhat wrung out--Annie. She seemed to be so much better yesterday--and only had ONE seizure all day. The bad news is, it happened while Bill was strolling her at the mall. Sometimes we forget what her seizures look like to the rest of the world, then get a fun little reminder like yesterday. Bill was happily walking her through the mall, when Annie suddenly slumped forward. Sometimes the seizure begins with an eye-roll, so maybe that's what the lady saw first--the lady who saw Annie's seizure, and yelled out, "Oh my GAWD!", then ran up to Annie as she continued to yell, "Oh my GAWD!" Bill stopped the wheelchair, bent over to pat Annie on the back, and tried to calm the lady down: "It's okay, she had a seizure, she'll be alright, look, she's coming out of it, it's okay," while thinking: would you please lower your voice so the mall police don't come running to look at Annie too? The lady looked up at Bill, looked around at the gathering crowd, and then slowly walked away. Poor Bill. Poor Annie. And poor lady who doesn't get to live in seizure world every day.
But--let's not forget that one seizure is better than six--so thank you for your prayers, and maybe send one up for the lady at the mall.
Jean