Vince’s lunch today:
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I couldn’t pass up the Irish soda bread at the grocery store today.
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Jeremy got me hipster chocolate from Portland.
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I made homemade puff pastry Hot Pockets for dinner tonight. They were a hit, but I accidentally burned Edda’s mouth with the first bite. Too hot!
Edda chased me to the edge of the bed last night. She doesn’t usually crowd me in this way, but she kept inching over and insisting on snuggling. I finally had to give up, stand up and walk to the other side of the bed where there was a vast amount of sleepable space available. I’m still working on the bed-rail situation, I will not bore you with the mundane details of mis-shipped packages, busted packages, multiple calls to Amazon customer service, calling medical devices places and blah, blah, blah soooo boring. Anyways, I’m hoping to have bed rails next week. We’ll see.
I was on the phone with the anesthesiology place at Children’s – (I did not call them, they called me) to set up a meeting for all of us about a month before Edda’s back surgery. The scheduler kept telling me – first you’ll have an appointment with the anesthesiologist and then you’ll have a second appointment with hospice. I was like, huh? but I didn’t say anything the first time. And then she said it two more times – the 2nd appointment with hospice. Then I said – you mean hospitalist? Because we don’t need hospice. At least I hope not. Poor girl, she sounded like she was 15 and she was really sorry. I said – no worries – I knew what you meant (though no one knows who a hospitalist is except people who work in the hospital – it’s a doctor that only takes care of you while you are in the hospital). I just wanted to make sure she got it right on all her other calls.
Then the nurse got on the phone and told me that I needed to set up appointments with neurology and cardiology. And I said – hhmmm, cardiology? Edda’s never had a cardiologist and I’m hoping not to need one. I said, you must mean hematology for the low platelet follow up. She said she would check to see if Edda needs a cardiologist consult. I’m hoping to keep that specialty off of Edda’s list (neurology, orthopedics, hemotology is enough. I’m glad to not have pulmonology and GI which are common for Rett, and no one I know has a cardiologist in their regular rotation) – though Rett is known to be mildly associated with long QT syndrome.
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Face timed Donald for just a minute today. Busy day. But so boring.
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I brought home a sample N95 mask – it’s what you wear for airborne precautions – most commonly for TB.
Passport photo for me today. My friend and I were lamenting about the march of time across our faces and our hair. Neither of us is coloring our hair. Me, because I’d rather look older than spend the $. Her, because she doesn’t want to spend a whole morning or afternoon in a chair at the salon every 6-8 weeks plus touching up the growing out roots. I think I’m aging gracefully, but Jeremy insists I’m still fighting it. He thinks I’m not comfortable with it as much as he’s comfortable with it. This is true. But he is a man. And anyways, Jeremy’s aspired to be middle-aged his whole life. (Jeremy’s in Portland now, where he remains middle-aged.)
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This is the only time in my life that I’ve been Asian Other. It’s a little funny to have all Chinese people dumped in the “other” category. If the Asian Indians get a shout out, I think the Asian Chinese should too.
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Dad and Max enjoying a tender moment (involving meat).
Good morning Thursday!
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Twelve hour shifts are messing with my eating. I don’t have my regular cues to remind me when to eat/how much to eat and when to not eat. And then there are always a lot of donuts on the floor which I always want to eat and I do end up eating. Ugh. And then I feel not so good afterwards. I think part of it is because I feel useless on a very busy floor. I barely know where the blood pressure cuffs.
Vince has been bugging me for many months now to extend his electronic curfew time. This week, he campaigned in earnest. He started messing with Edda at her bedtime, he started stealing internet time from our various little outdated devices in our bed. I’m worn out, tonight I extended it another 30 min to 9:30.
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I went to the police station today. They converted the old post office (a beautiful building in downtown Rockville) to the new police station.
It’s a little confusing because they left the lobby just like the post office. They had to tape a handmade sign to the front door – THIS IS NOT THE POST OFFICE.
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I had to swim today because my ankle is still bothering me, hopefully another few days it’ll be fine. I don’t usually go in the direction of the pool and so I was surprised to see this new sign:
Go Rockville! We know what side we are on for the bathroom bill. It’s interesting though – it is a 2 stall bathroom, but now you are suppose to knock before going in and then you can lock it behind you. I did not lock it behind me because I don’t care who poops next to me. As long as you don’t fart at the same time. That might be unacceptable. I think they could just drop the “all-gender” part from the sign and just say “bathroom”.
Sexy laundry folding. Rawr. I spent 45 minutes today listening to the Radiolab podcast about CRISPR, the new gene editing technology. I’ve been avoiding learning about this because it’s a little scary and it makes me feel old – like science is just passing me by and I’m not there in lab with pipettes. But then I remember that research is boring and tedious even when it sounds exciting in a podcast. CRISPR is a cheap, accurate way of slicing out any specific little parts of DNA anywhere in anything that has DNA and then replacing it with any specific other DNA sequence. They are curing muscular dystrophy in mice, they are slicing out Huntington’s disease genes. It’s not completely inconceivable that in 15 years they could edit the errant gene out of Edda’s DNA sequence. What would happen then? Would she be able to learn to talk? Could she learn to read? Maybe she could. That would be exciting. I’m hoping that happens in my lifetime. I suspect that learning those things would be hard for her even if all the MECP2 genes were turned on right now – like trying to learn piano when you are 45 – you could be competent at it, but never truly fluent. Those muscular dystrophy mice weren’t exactly “cured” but they were able to get steadily stronger and put on muscle they weren’t able to before. They are working on gene editing for embryos (there are various ethical issues) – I wish I could be around to see this, you could really start engineering people for advantageous traits. I don’t think Vince’s kids will have to deal with this, but maybe Vince’s kid’s kid’s? Anyways, it’s about time I read/learn about it because JLo knows more about it than I do (probably) as she’s about to produce a TV show called C.R.I.S.P.E.R.
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It’s nice to have a strong teenage boy in the house to move heavy appliances.
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I twisted my ankle today running full speed and stepping into a gopher hole. For a moment, I lay on the ground and tried to assess without moving any part of my body whether I was OK or not. Then I let go of that thought and stared up at the blue sky for at least a few moments and cursed the damn gopher. Thank goodness I was only 200m from the car.
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Vince helped watch Edda this afternoon while I did some work. “Taking care” of Edda involves putting her in a scissor hold on her bed apparently.
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Bette was elected to Riderwood’s Resident Advisory Committee. A tough campaign – 10 candidates for 5 spots. We celebrated with a box of chocolates.
Jeremy made enchiladas for dinner tonight.
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Then he wanted to see Purple Rain – the movie.
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The quilt continues.
Ever since we stopped using au pairs for Edda-care, the most precious thing that we’ve given up is the morning care – getting Edda ready for school. It helps us both out a ton to have the 75 minutes from 6 am to 7:15 am free. There are other things that we’ve given up too – a regular weeknight date night (which I think is OK as long as we get to chat most evenings from 9:30-10pm, no need to actually go out. Anyways, we both have evening things going on which make date night logistically difficult even if we did have childcare that would go until 10pm) and clean laundry for Vince (I picked up all of Edda’s laundry, but Vince is suppose to do his own. I have not done it in many months now. I don’t think he’s done it for months either. It’s disgusting – yes. But I’m hoping falling in love will change that. You know when they ask a girl what they are looking for in a guy and she says – well I want him to be kind, have a good sense of humor, handsome, smart, etc? They don’t even mention good hygiene because that is like an understood baseline criteria – right next to being alive. Girls don’t start their list – well, I’d really like him to have a pulse. ALL girls want a guy with good hygiene.)
Got off track. Jeremy’s been doing the am routine because he’s a nice guy. But now he doesn’t want to be just a weekend bike warrior, he’s trying to fit bike a workout in before heading to work. And so we are trying to figure out what we can do. (Marriage? Not about love & flowers & kisses. It’s all about who gets 45 minutes to themselves in the morning).
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So many people are thrilled, just thrilled that it’s 75 degrees in February. I’m not thrilled. I think we are doomed. I wore my down coat and fuzzy boots this morning to protest.
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But I did enjoy a nice ice cream cone.
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Friday night dinner with my parents at A & J. We got there early enough to not have to wait in line.
The boys ordered some weird green drinks.
Edda enjoyed her pork/egg/rice dish.
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Afterwards I took the boys to see Avenue Q at Montgomery College. This is the only musical that I know all the songs to (except for Les Miz which was in high school). I missed this on Broadway so I grabbed this chance – $10 a ticket! A bargain. It’s a little dated – it’s hard to imagine a closeted homosexual having such a tough time coming out in NYC these days. Also references to computer labs at college where everyone is huddled together at 4am in the morning. And a big thing about Gary Coleman which the boys have no cultural reference to. But it was funny and great. The boys loved it. I played the soundtrack 17 thousand times to Vince when he was pre-verbal because it sounds like kiddy music, but then he became verbal, but not yet understanding and there are many raunchy songs on the soundtrack so I had to stop listening to it when I would hear from the backseat of the car from the tiny Vince – “The internet is for porn!” Whoops. Can’t go to preschool singing that song.
No photo today. Just a bag with Ruth Bader Ginsburg. I did my 2nd shift at the hospital yesterday. Even though the hospital is five minutes from the house, there is a huge difference in my efficiency when I’m away from the house working for 12.5 hours compared to working at home for 8 hours. That’s 4.5 hours a day that I stuff a lot of crap into – I can usually get a workout, cook/prep dinner, follow up on insurance/bills, laundry, helping Vince/Edda out, studying for nursing school. I still persist in my desire to get all the stuff done even though it’s really not possible. Yesterday, outside of the shiftwork, I still wanted to: get a run in, do a load of laundry, get an hour of work done, review math with Vince, wash the dishes, pay bills and study for a test I have in a few hours. I did get a run in and I did pay a bill (which I owed the hospital and I paid in person, I’m not sure that counts) and that’s it. I wanted to be asleep by 8:45 pm.