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I think Jenny and I have both been reticent to admit the nerves we’re experiencing. Maggie’s EEG which was scheduled months ago has finally arrived. We go in on Monday. While we were told it is very likely to be abnormal, as all girls with Rett have abnormal brain scans, we’re both hopeful, maybe Maggie is the exception. I think we’re trying to force that emotion down as neither of us really wants to deal with a disappointment, since this is one we wouldn’t be able to fix with the power of our will.
On top of that stress, it feels like we’re losing the battle with her arms. It’s heartbreaking to watch. While I haven’t admitted defeat, and hopefully never will, I’m watching it happen and the experts are saying it’s more or less inevitable. We have to be in the very small minority in order to stay the course of this thing. So there’s something to hope for, but watching her lose control of her left arm as it repeatedly taps her chin, sometimes finding its way into her mouth, is hard. I imagine it’s hard for her, too. She knows what’s going on with her. She knows she can’t stop her right hand from wringing. She knows her left arm makes repetitive motions constantly. She’s trying to control it, but she can’t. In November these movements were barely noticeable, but now they are constant through her waking hours. Bracing only has a temporary effect, and we’re doing all we can. We just haven’t found the right concoction of treatments yet. We’ll continue to look.
She’s starting to show some oral motor issues as well. Maybe she’s just sticking her tongue out to show it to us. Maybe she’s just trying to say “na-na-na-na boo boo”. But, maybe it’s Rett. And I hate saying that. I hate accrediting anything to this thing. If I didn’t have this thing to blame, it’d be easier to will this thing away, I think.
I also started working again this week. While they’ve been flexible and are generally ok with me working from home when I need to, it’s been tough being away from Jenny and Maggie.
I don’t know. Been a tough week.
