I'm having a "Rett day" today. Oaklynn has been screaming and crying randomly. Rett syndrome is just a guessing game and I'm starting to realize how hard it is. You start by trying to figure out if it's something small like she would rather be watching a movie than playing. Or wondering if her foot is asleep or if she needs a diaper change. Then once you have gone through the small things you wonder if she is hungry, or tired. Then you wonder if she is in pain and has a tummy ache or if she has a headache. Then because we are in Arizona, I worry about her being stung by a scorpion so I start searching the area to make sure that didn't happen. Then once you've tried EVERYTHING you can think of, you have to just assume the "Rett monster" has taken over.
You don't want to assume that she is just throwing a Rett fit (crying for no reason) but once you have tried everything, you kind of have to just assume that is it. We are having one of those days today (as we did yesterday) and it's getting to me. Being pregnant and emotional isn't helping either. Crying along with her when she cries does not help the situation!
I am also going off of about 4 hours of sleep due to the "Rett monster" causing her to wake up screaming and crying at night. It usually lasts about 3 hours before she falls back asleep again. I don't go in and get her because there is nothing I can do even if I get her. I just get up at 2am and start cleaning (since i can't sleep though it anyways) and then go back to bed once she falls asleep.
I just wish she could tell me what was wrong so I could help her easier. I try to think I am a pretty patient person so I don't think it's because I am impatient. I think it's more having a hard time listing to your child scream as if they are in pain but not knowing how to help them or if it's even pain or just Rett syndrome taking over. This Rett stuff really is hard work!