We had an appointment with Edda’s neurologist at Children’s (telehealth) on Tuesday and arranged for an EEG (3-day?, 2-day?) and to start her on Keppra. We were initially going to hold off on starting the Keppra until after we got the EEG done since we’ve been putting off starting her on anticonvulsants for months now, but she had a pretty good daytime seizure yesterday and the EEG place couldn’t schedule us until mid-August (they are doing only 1 a week?!) so we decided to start her on the medication last night. Edda is becoming sicker faster now. We had a long plateau of steady health, but now I feel like we are going downhill at a pretty good clip which is excruciating to me (I’m not sure how Edda feels about it. Right now she’s smiling and watching TV and walking around). Her teeth seem fine, but she’s not eating well. I can’t tell if she’s not hungry or if her mouth hurts or what. She’s always been a good eater for a Rett girl – almost no problems with eating. And now because of the seizures, we are reluctant to have her walk around a lot without close, close supervision. So she’s walking less. And then we are bracing both arms to prevent her from biting herself….anyways, none of this is unexpected – I’m not surprised by any of it, but it’s hard to go through. I know I’m going to see the complete arc of Edda’s life and that’s OK.
I got an email from MIT about their fall plans. I’m interested in how a big public school with budget cuts like Davis will have to do differently than a small, private, bottomless pit budget school like MIT. MIT will open, but they will have to turn all the shared dorms into singles. So not all undergraduates can come back. No lectures. Of course all the regular stuff like distancing and masks and cleaning. But they will also have extra stuff like regular covid testing of all the students. They will have temp / symptom checks every day that you have to report via app. They will have contact tracing. You can enter building by one door only and that’ll have to be opened with your ID. I suspect Davis will have none of that extra stuff.
I’m working on slowly putting together a home gym. I do miss the gym a lot. I miss seeing people at the gym who are working out (I know none of their names). I miss having all the equipment that does not take up any space in the house or that I have to maintain. And they are opening again soon in Maryland. But I think that I won’t go back. Everyone spends a long time at the gym and breathes hard. You’ll know I’ve forever turned my back on the gym if I break down and order a treadmill.
Jeremy is the loneliest of us all. Vince has friends online all day that we can hear he’s yelling at while playing video games and recently they’ve gotten together outside to play. Edda doesn’t seem to mind. I have the full spectrum of interactions/emotions at the hospital and I don’t need anymore. But Jeremy, poor guy, is more lonely than he’d like to admit. So I’m paying extra attention to him. Though sometimes, I blunder and zone out.