Run, DVDs, fists!

Thank you Wootton XC team for a helping a old lady get through her long run on Sunday:

Happy long run day.

You can run up the hill, but the team takes you up the mountain.

Say their names!

Sunday night dinner with the family:

I’m trying to do my most favorite hobby which is throwing other people’s things away. I tried to throw away all the DVDs in the house. Both boys protested. I’m like we do not have a DVD player in the house. No one has a DVD player in their house. We can download any of these things at any time. Vinced ask if he could keep them in a corner of his room so I wouldn’t be able to see them.

Edda in defiance.

Update.

It’s hard to keep up these days. OK. On Thursday, Jeremy woke up with blurred/missing vision in one of his eyes. It’s alarming to lose a field of vision in one eye. We found an opthamologist randomly who could fit him in at 10:30. Turned out he had an ocular migraine which is temporary and passes quickly. But we were freaked out for a good three or four or seven hours there. It’s good that he went to the opthamologist – he usually goes only to an optometrist, but he’s been complaining about his eyes for years. His eye are fine. No glaucoma no cataracts, just very bad astigmatism (which he’s known about) in one eyeball which makes it hard to correct.

I had a shift on Friday which was one of the easiest shifts I’ve had in awhile. I can tell I’m much less needy myself because I have patience for my patients. omg. Still so much crying (from my patients), but getting better. Edda had a fantastic day on Friday at home. That makes my heart sing. And I got cancelled today – census was low so they didn’t need me. I happily take the cancellation, though I know at a union hospital they usually have a no-cancel policy. Because if I was full time and got cancelled, I’d need to cover it with my PTO which is not cool.

Maxi’s 10th birthday was this week. We gave her a peanut butter single serving cup.

Vince delighted in his graduation gift – sherah :). He’s already cooked dinner for us with it. He’s working on the card.

Let’s look at his senior grades – note – colleges do not get quarter grades, colleges get the semester grades – First semester – he gets all As and a B for the semester:

Third quarter he’s really dropped his effort there, but then the pandemic saves him in the 4th quarter and he ends up with the same result for the semester grades. I think I would have rather skipped the pandemic and finished out the year with a C in biology.

We are doing so so so so badly as a country. Last week I was like – we are going to road trip to Davis at the end of September and this week I’m like there is no way in hell any college in the country will open.

B&J, bike, tongue.

We celebrated Father’s Day on Saturday night as I was going to be at the hospital on Sunday. What Jeremy really wanted for Father’s Day was a Ben & Jerry’s ice cream cake. And so we got one and ate it and it was delicious.

For Father’s Day, Jeremy got Vince a bike. One of the best things about UC Davis is that it has a very strong bike culture and we wanted to get Vince a nice bike for college. Vince loves the bike.

What we spent most of the week struggling with is Edda’s seizures. It turned out that during the last seizure I blogged about, she managed to bite her tongue really hard. It took us a few days to figure that out because her tongue took about 48 hours to turn black and blue, but while the bruise was developing, she just seemed to stop eating completely and we didn’t know why. I was at the hospital a lot and Jeremy spent hours and hours just spooning soft, sweet things into her mouth and hoping to get a dose of anticonvulsant into her. She wouldn’t eat a lot of her soft favorites, like bananas or yogurt, but thank goodness she always seemed to be able to eat ice cream. So she ate a lot of ice cream. And she’s much better now – ate breakfast happily, drank a full glass of water.

All this coincided with our caregiver, Kitachi, having her own medical issues and such things that required her to have time off, so we’ve been extra busy and tired.

EEG, MIT, gym.

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.

UC Davis update.

UC Davis announced its fall opening plan here. I can’t quite tell if it is telling me 1) please, please, please stay home or 2) please, please, please come to campus. The cases in CA are certainly rising right now. Who knows what it will be like in September. Yesterday Vince was a little testy (we’ve all been on edge in the house) and when I asked if he wanted to go to campus in the fall, he looked at me and rolled his eyes and groaned and I said – I guess that is a yes. Absent any logistical complications, I would prefer that he stay home fall quarter and let them get the kinks out (mostly to see if most people can stay healthy) and then go to CA for the winter/spring quarters. Davis made no mention of the dorms except that they would de-densify them. UCLA said they would prioritize dorms allocation based on financial need and distance of home residence from campus. So if Davis did the same thing, Vince would hopefully get a dorm room. I think if he got a dorm room, we’d send him there in the fall – if he didn’t get a dorm room, I think we’d have him stay here. I’m 100% sure that he could get all his freshman courses online with no problem. We need to get him some antibody testing. Soon. At least we’ll have about 2 months worth of data from other colleges that are opening in early August. Davis doesn’t start until Sept 30.

Spanish.

I started taking Spanish lessons a couple of weeks ago. I realize that I don’t have any time to learn Spanish right now, but I feel like if I don’t start now, it just gets later and later and harder and harder to remember any words. I found a teacher on italki and speaks 7 languages fluently (omg. 7! – English, Spanish, Catalan, French, German, Italian and Portuguese and learning Gaelic and Swedish) and three lessons in, I’m wishing I started a decade ago. I’m actually not sure I could have started a decade ago – I think I needed to watch Vince just tumble into Chinese and China and having fun with the language knowing only a handful of words and terrible pronunciation. In the past, I would have been too embarrassed to try to speak to a native speaker. But I’m mostly over being embarrassed at how bad my Spanish can be. I was groaning and talking to a friend about all the verb tenses (14? 17?) and how I’ll never be able to remember them all and she said to only learn the present and then modify by saying yesterday or tomorrow. Ahahahaha. A month ago, Spanish just sounded like one long flowing river of sounds. Now, I can differentiate words in conversation. And every once in a while, I can hear – oh yeah, that’s a word I’ve heard before – I should remember that word, but I’ve forgotten what it means now. I can tell that I’m tired now…I can practice all the time at the hospital, but when I’m tired and stressed, I can’t even really go through my simple introduction that I usually give all my Spanish speaking patients. Oh, and I had both Spanish and French speaking patients recently and that is super confusing. All the cobwebbed words from HS French mix with the more recent Spanish.

Congrats! (?)

Vincie graduated yesterday (I actually have no idea when he graduated. He says he was done with school on March 9th, the last day that he went physically to school). We had gotten notification that it would be happening at 4pm on Friday and I thought it was going to be a live stream! But it wasn’t live. The youtube link went live at 4pm with a pre-recorded ceremony. You can see Vince’s slide at the 38:25 time stamp.

BIPOC at work.

Our favorite family quarantine pastime (watching Bon Appetit videos) has come to an abrupt (yet unfortunately in hindsight not surprising) end when earlier this week it was made known that they had been not compensating their BIPOC staff the same amount as their white staff. Sohla led the outcry – turns out she was not paid for any video appearances. We’ve been Sohla fans for a long time (meaning since the start of the quarentine), I hope she ends up getting her own show or running a food empire.

Jeremy’s work is also going through a similar thing, I suspect many places of work are taking a hard look at their staffing and compensation right now.

Graduation & update.

Our neighbor made this very nice celebratory sign for Vince’s graduation.

We made him pose in his regalia. His school graduation is zooming on Friday afternoon. Is he supposed to sit on the couch with us in his cap and gown? I guess so.

Edda is doing much better. The teeth look mostly good. I think she’s learning to chew with the teeth in the new position.

I have had the worst run of hospital shifts the past week. I can’t believe that I’m saying this after my month-long stint on the COVID units. COVID patients (at least the non-ICU ones) who are pretty stable are actually pretty easy to deal with technically as a nurse. You give them some pills at 9am and then keep them on O2 all day. Some days you turn down the O2 a liter at a time and check if they can come off oxygen. Sometimes they can be weaned, other times, you’re like nope! You gotta stay at 4L. All the non-covid patients who are showing up to the hospital now have either 1) a ton of stuff that is medically going on with them and have had chronic, intractable problems for a long time and require a lot of care or 2) are very, very, very emotionally needy and probably haven’t seen or talked to another person for a sustained period over the past two months. I have spent 36 hours of my last week basically being berated and yelled at while trying to be calm and reassuring. It is not easy. By the end of my last shift, I was so worn down. I got fired by a patient on Tuesday. This has only happened once before when I was just off of orientation. While my unit is a medical/surgical floor, we are low on surgical patients (who usually follow a predictable course of treatment in the hospital) and heavy on medical patients (who are complicated and we course correct throughout the day which means that I need to hunt down the doctor more and change what I’m doing, etc.) I pray all the time that some lab result comes back normal so then I’m like – thank god, I don’t have to fix that. I don’t have to give a transfusion or replete their potassium or order EKGs or send them down to CT. I can just take a moment to close my eyes and breathe.

Teeth, BLM.

Edda’s teeth seem to be staying in her head. They are in a different place than they were before, but that’s OK. She had a rough week, but since Saturday, she’s back on her regular diet. We had her on a modified ice-cream, tapioca pudding, yogurt & Ensure diet at the beginning of the week.

We believe that Edda had her thumb in her mouth and then had a seizure and then bit her thumb. Unable to release her thumb, she reflexively yanked her thumb out of her mouth pulling out two teeth. By Wed, I realized that she probably needed some systemic antibiotics for the bite and we got that from the pediatrician.

Vince and Jeremy went to the BLM protests at the end of the week. The first one in Rockville organized by RM students.

The second one downtown on Saturday – mid-day. Jeremy biked into town. Vince and friend Sam took the Metro in. All were back home by 3 or 4 in the afternoon. Vince said that it was just starting to pick up as they were going home, but I was glad they went early. I’m not a fan of crowded Metros – and they said that the trains were pretty empty when they were riding them.