It was a ‘kids’ weekend for me the Saturday/Sunday past. It was full of crazy/funny/frustrating/tantrumy/whiny/hectic/I don’t eat that/but you loved that last time/no I didn’t/memorable moments/please sear from my mind, moments kind of time. And it was beautiful.
You see, for the first time in a month, we went an entire weekend without Abby having a seizure, without her ending up in hospital.
Seizures are par for the course with Rett Girls. I’m pulling this figure with zero research but I think it’s around 85-90% of Rett girls have them. Generally, they’re treated with medication – morning and night with multiple medication for Abby (she can go months without a seizure in normal circumstances). But not all days are normal days and sometimes, especially when she’s sick and her immune system is under the pump, the usual treatments don’t work.
Such was the case four weekends ago. After a series of seizures Abby was in hospital for a night, then another. All of a sudden, parents, their parents, partners, workplaces and schedules are thrown into chaos as we take shift at Abby’s side, look after her brother and sister or catch up on sleep. Slowly the extra medication at hospital kicks in and she starts to recover. Unfortunately for us the virus wasn’t on the same page as everyone else and, after four days out of hospital she was back in again. Then again the week after. All up she spent five nights out of 15 in hospital.
But last weekend was seizure free – brilliant – and she’s backed it up with a seizure free week as well! So, we touch wood, hold her tighter, catch up on sleep the soldier on.
