Breaking quarantine.

I took my vaccinated self and busted out of quarantine in a grand way. I went to Colorado for Keyla’s wedding and I had the best, best time. After not socializing for an entire year, it was a wonder to be able to share happiness with someone. To dance! To drink! To be offered weed! To make new friends.

I’m not a natural solo traveler. Sometimes travel logistics stress me out, but my main reason is that I don’t like to drive and I really don’t like finding parking. Parking stresses me out. I know, it’s a bit of a lame excuse for not traveling on my own. I found a UCS ad at Dulles.

I will say that the airports were more crowded than I thought they would be. There really was no distancing, the planes were 60-80% full. I would not have gone on this trip if I had not been vaccinated, it would have been too anxiety provoking for me. I made it to the hotel in Estes Park on Wed and was met by a very happy and enthusiastic St. Patrick’s day celebrator.

The morning of the wedding (Thurs), I ran around the lake in town. And then, since it was still early, I went to some store and rented snowshoes and got some recommendations of where to go snowshoeing.

I went snowshoeing for a few hours by myself. I count this as brave.

And then there was the wedding. It was so much fun. None of Keyla’s family could come from Buenos Aires because of the travel restrictions. I slowly realized that I was the only person at the wedding on “Keyla’s side”. Everyone else was Mark’s family or close coworkers.

I met and talked to everyone at the wedding. I got to sit next to the mother of the groom for dinner. I got to dance and drink. I got to teach Keyla about the garter belt. I had the best best time. So happy I could celebrate with Keyla and Mark.

The day after the wedding, I had a lovely brunch with Keyla and Mark where I had the chance to talk at length and to update Keyla and to learn all about Mark. After brunch, I took an afternoon touristy group tour of Rocky Mountain National Park. It’s not the high season for anything really, but we did spy a couple of elk and deer.

On Saturday, the day I was flying home, I got up early and went to one of the most traveled hikes in the entire park. I got to the parking lot at about 6:30 am ensuring both the parking spot and that I’d have the trail to myself for at least a little bit of time. And on my outbound snowshoe trip, I saw only 3-4 groups of people. This trail was to Emerald Lake which was suppose to take you past 3 lakes. About an hour into the hike, I realized that I was standing on top of and in the center of one of the lakes and then I got really nervous. I was just following the tramped down snow trail that countless hikers before me had taken. It had been in the 60s during the day all week. I could see the slushy foot prints from the day before which then had frozen overnight. I really didn’t want to fall into the lake with no one else around. So I turned around. On the way back, the trail was much more congested and I had a great time offering to take photos of groups of people. That was fun. I always pulled up my mask to take the photos, but the last group was a bunch of seniors who said – we don’t care about masks, we all got our shots.

I’m so happy I went. I’m so happy for K & M. And I’m so happy I didn’t fall into a freezing cold lake.

Quilt, walk, teacher heroes.

I finished my quilt (top) this week. It’s my pandemic quilt. Jeremy got me the pattern for Christmas 2019 and I started it in January 2020. But for most of 2020, it sat idle. I didn’t touch it, even during the two months I quarantined from the family because I was working on the covid units. I had moved it into quarantine with me to pass the time I thought I would have because I couldn’t launder, cook, clean, snuggle, or hang out, but I didn’t touch it. Honestly, I preferred to sleep, watch TV and try to not go mad with anxiety and exhaustion. But I made it through that. And I made it through the terrible summer of Edda’s teeth injuries/seizures and racial turmoil. And then I made it through the fall and the election. Sometime after the election, I think after the Jan 6th insurrection in DC, I turned back to the quilt in the early mornings for some solace. And I patiently worked on it in the darkness of my house slowly waking up. And now it’s done. I’m going to send it out to my quilting guru for her to quilt it for me. And then I think I’m going to keep it. I usually don’t keep any of my quilts, but this one, I think is mine.

It was a gorgeous day on Saturday. Alice and I (and her family and the dogs) went for a walk in the woods.

The elementary school kids (K-2) started back in-person on Monday. I ran outside for the first time in months and passed by my very own elementary school where they had placed a celebratory sign for all the teachers welcoming back the littlest ones.

UC Davis vs Princeton.

In a weird turn of events, student protesters want Princeton to be like UC Davis:

Several protesters interviewed by the ‘Prince’ cited the University of California, Davis, as an example of how the University could expand its COVID-19 resources to protect the community at large. Since last fall, UC Davis has offered free COVID-19 testing and quarantine housing to the nearly 70,000 residents of the city of Davis.

Chang also responded to this comparison, writing to the ‘Prince’ that “[a] comparison between and among institutions and organizations in different states amounts to comparing apples to oranges. It is not valid.”

Chang emphasized that the funding infrastructures are completely different between the two institutions, noting in particular that UC Davis has medical and nursing schools, meaning greater medical infrastructure, as well as the fact that it is a public university and therefore funded with taxpayer dollars, “not through charitable donations made by private donors for the particular mission of education and research,” like Princeton.

Ahahahaha! *&*#&$ you, Princeton!

Endowment of UC Davis: $1.66 billion, 31,000 undergrads

Endowment of Princeton: $25.9 billion, 5400 undergrads

I love that in the Good Place, the most annoying bad person went to Princeton.

Cupcakes, drying, one year pandemic.

It was Vince’s 19th birthday on Tuesday. We did a ridiculous thing and FedExed him a dozen Georgetown Cupcakes which elicited the anticipated (at least from me) squeals of excitement from his mostly female dormmates. Vince (who can be a little too cool for GTC) was surprised that there was traction and recognition on the west coast for them. He didn’t realized that there was that TV show about these cupcakes called DC cupcakes that was nationally aired. But you can only get these cupcakes on the west coast in LA. Anyways, the bar is set high for next year’s birthday. (Vince I’m not sure you are getting these cupcakes every year, lol.) Of course, his birthday is his birthday, but Vince’s birthday is the day I became a mom. Vince and Edda are my greatest teachers. I’m lucky to be their mom. I was never a person who really strongly felt the pull to be a mother, but I’m grateful for my children. Finals are next week for him (god, the quarters go by so fast), and he’ll be out there for spring break – not coming home. This time I’m sure he can’t come home, college kids shouldn’t move too far from their little (yet, enormous) bubble. They are the worst possible vectors now, Vince included.

The dryer is still flummoxing me. The part I thought was broken was actually OK. I had to break out the voltmeter to test stuff out like I was some sort of electrical engineer. Turns out I didn’t even need a voltmeter to figure out what was wrong, the heating coil was actually just broken mid way through its coiling. So I ordered a replacement coming today. I didn’t buy the OEM part ($150). I bought the knock off ($25) from Amazon with many many 4.5 star reviews, but of course, the first review was like – this is a piece of shit part. What can you do? I’ll try it out. If it breaks again, I can literally replace it 5 more times before I reach $150. That would be a pain. I remember once standing in a Lululemon store and they were showing off a $150 running shirt and saying how much longer it lasted than a Target running shirt that literally was $10. I keep my Target running shirts for over a decade. I have running shorts I still use weekly from before Vince was born. Those synthetic materials never ever break down. I want them to break down so I have an excuse to buy some luxury fitness clothing!

I count today as the full year of the pandemic. I remember I was working at the hospital on March 11th watching the TVs in patients’ rooms. I was not wearing a mask. It felt like a normal day at the hospital. I watched the WHO declare that we were in a pandemic. I watched the stock market plunge. I remember being with a patient who needed tube feedings every three hours or so (takes 10-15 minutes to do) and standing in that room measuring out the formula wondering what was going to happen at the hospital. I remember in January (before anyone thought about pandemics), I had a patient who needed an NG tube. It was my job to shove the tube down his nose and into his stomach. I put on a mask (pre-covid, nurses did not usually wear a mask for this procedure) and got all my supplies ready. When he looked at me, he said, why are you wearing a mask? And I said, well sometimes things that are inside you might splash out and I want to keep that stuff from going inside of me if that is OK. And then he nodded with understanding – albeit begrudgingly. In late February, I was discharging a patient from surgery and remarking that it was lucky that they were going home ahead of the pandemic and she looked at me with wide eyes and asked if I was scared, as if being a nurse made me less scared, and I said that, yes, I was scared just like she was scared. I honestly can’t believe what we all endured. Everyone has their pandemic stories. Even if you didn’t have the most tragic thing happen to you or your loved ones, it was a lost year which was full of fear and isolation. The isolation is the worst honestly. Oh no, maybe the fear was the worst. You know what’s the worst? Looking at someone come down the street and thinking that they are the enemy. That they are not you – not part of your “bubble”. That they might (inadvertently) hurt you even though they are scared just like you. Argh. I hate thinking that way. It messes with your mind.

Lowe’s, washer, seizures.

This weekend I visited my dad at Lowe’s. He worked his first shifts mid day Sat and Sunday – the unwanted busy shifts. I actually told Jeremy I was going to go to Home Depot and he said – you mean Lowe’s right? Yeah. I meant Lowe’s. I brought Edda with me – us two vaccinated people going on an outing to Lowe’s. My dad was charmingly helping customers and had a couple of coworkers. It was kind of cute to see. Jeremy said he wanted a ficus tree with a braid in the trunk to give me something to buy, but ficuses are out of style. You know what’s in style (at least a Lowe’s) for indoor plants? Fiddle-leaf fig. They need full light, we have none of that here.

God help me, our dryer broke on Saturday. I ordered the wrong part at first which came on Sunday (I didn’t buy them from Lowe’s) and I realized that only after I took the entire dryer apart that night. I got the (I think) right parts on Tuesday, but the fully taken apart dryer is kind of just mocking me. I’m discouraged. The drum of the dryer is sitting on our upstairs landing and I’m wondering if I’ll be able to remember how to put it back. There is laundry all over the second floor in varying states of drying (semi-dry)/washing (somewhat wet)/clean (dry) /dirty (dry).

Ack, after we had such a nice visit with our Philly neurologist with a great plan, Edda’s seizures have gotten worse in the past week. We see them daily at all different times. That is discouraging too. And we crossed some miserable milestone where she had a seizure during school yesterday. Never before have the school staff seen Edda have a seizure. I know, she’s been out of school for a year, but her high school team has known her for more than two years. So they really know Edda. There is a “rescue med” which you can give someone during a seizure which is unending (lasting longer than 5 minutes) and I had gotten the prescription for it last week from the Philly appt and sent it to school yesterday along with the “seizure plan”, so I thought the nurse calling me was just confirming that they had received the medication, but no, Edda had had a seizure. The nurse said literally 10 minutes after the med was dropped off, she got the call from the classroom. None of this is really surprising to me, we have pals that are unfortunately way ahead of us on this road, but it doesn’t mean it isn’t heartbreaking. And this is all against the first few weeks of school where it’s stressful because everyone is getting used to the new routine with all the cleaning/distancing and you can’t distance from Edda even without seizures and, of course, when she was having the seizure, the first thing they did was rip her mask off of her face. I’m asking a lot from the school staff.

CHOP, Camphill, earrings.

Edda ran a fever of 100.3 on Tuesday after her vaccination and she stayed home and did virtual school. She was a little tired, but not too bad. On Thursday, we headed to Philly to see Jeremy’s college friend Dr. Marsh who is a pediatric neurologist up at CHOP running the Rett Clinic there. We set our alarms for 5:30, but we woke up early because, Edda, full of surprises, had a seizure about 15 minutes before our alarms and was covered with blood.

Turns out she had a bloody nose at 3 am and then a seizure at 5 am. So we all waited for the seizure to pass and then got everyone up and showered and I threw the linens into the laundry and we headed to Philly for a 10:30 appointment. It turns out I was at CHOP 5 years ago for a check up for Edda as part of the natural history study and I completely blanked on the visit. The person doing the intake clearly remembered me and I was embarrassed to admit I had no recollection of it. So we updated everything for the history study and then we had a long appointment with Eric which was fantastic and totally worth the drive up to Philly. We have a coherent plan and objectives to meet and things to try which balances Edda’s seizure control with her ability to enjoy herself most days. The Keppra (and all seizure meds) blunt Edda’s joie de vivre and there is so little she enjoys anyways that medicating her for relatively infrequent seizures is always a trade off. Jeremy, honestly the star of the appointment, showed all this video documentation of Edda’s seizures which allowed the neurologist to say – yes, that for sure is a seizure – focal, with Chapeau de gendarme features – or no, that most likely isn’t a seizure – which was fantastic for us. (I on the other hand, totally forgot her seizure tracking calendar that’s hanging on the wall in my office and the names/doses of all her medications that she’s been on in the past – Trileptal? Lamictal? can’t remember.) Eric basically said there is no evidence of seizures in the Rett population damaging their brains, so if you can tolerate a three minute seizure while she’s asleep in bed once every three weeks and her seizures are not going to hurt herself physically – you might not want to medicate her for that. We are not going to discontinue the Keppra right this instant, but we have a plan for the next 3-4 months which might have her coming off of the Keppra and seeing what happens. (Because right now we have no idea if the Keppra is doing anything at all to her seizures and if it’s doing nothing, I’d rather her not be taking it).

Then we went to Kimberton, PA (about an hour outside of downtown Philly) where Bob and Katherine are building a house on the property of an intentional community.

We spent a lot of time talking to the project manager and one of the construction folks and then taking lots of photos and measurements. We also Facetimed Bob and Katherine in Berlin to do a more in-depth tour for them. Never in this pandemic did I think we’d visit the house before B &K, but that’s the pandemic for you. It’s a lovely house and a lovely community. I hardly ever see disabled elderly people living their best lives. Ok, maybe hardly ever is really truly never, but I met lots of them here and they were living their best lives. I might have almost cried. Ah, B & K’s new house is close to cows, but Vince lives closer to cows. Never did I think so many of my family members would live within a stone’s throw of 100 cows, but you never know where life will take you.

Edda made it back to in-person school on Friday. It was a very successful first week of in-person school. We missed a lot of the days, but I think the teachers did a great job under incredibly difficult and stressful circumstances.

Vince, flush with birthday money, got both ears pierced at some hipster shop in downtown Davis. We said – awwwww, just like your father! I fell in love with Jeremy, he had 7 ear piercings. ‘tho I’d like to believe that Jeremy was the vanguard in 1995 with male ear piercings. See? Jeremy can be hip even though he seems totally regular now. Oh! And I found a new adjective for me. I’m amasian! and vince is 1/2 amasian!

Back to school, vaccine.

Edda started school on Monday. Ack, I’m anxious and irritable with this new routine. I mean, I’m excited that Edda gets to see her friends and be with her teachers and paraeducators, but man, it feels like I’m sending her into a not safe situation even though, logically, I think that she will be fine and her class will be fine. (I think the person I should worry about the most is Vincent, who I can’t see (out of sight, out of mind), but is out there doing college stuff with college kids.) Remember when you were in college and, for most of us, bad things happened only to the mythical and mysterious “other people”. Now we all know better.

Jeremy prepped the meals Monday morning. I prepped Edda.

Maxi was out of her mind with excitement. She knew something was up and danced around all of us all morning. She figured it out and took her regular sentry position at the front door – ready to alert us to the bus.

And here’s the bus! The regular crew is back. Edda was the only kid on the morning route for now.

In the afternoon, I took Edda to her 2nd vaccine appointment. Jeremy had warned me that they had stood outside for about an hour last time and that he and Edda were unprepared for being cold/hungry. I brought a blanket to cover Edda in her wheelchair, but we were only outside for 10 minutes and were seen promptly. On Tuesday, we kept her home because I knew she would be tired and she was running a fever.

School update.

We had a zoom meeting with Edda’s teacher yesterday to go over her new medical protocols re her newly onset seizures that they (and we) were just beginning to see when school shut down last year. Most of Edda’s seizures happen outside of school hours, so we are keeping our fingers crossed that that will continue to be the case. They do have experience with other kiddos who have seizures, so hopefully it won’t be too freaky. Mainly, we are trying to avoid calling 911 and having an ambulance take her to the hospital unnecessarily. Usually, there is a strict protocol that the school has to follow for calling 911. Though if it happens, it happens.

Everyone is excited and freaked out at the same time. I think it’s leaning more to freaked out now, but I’m hoping that in a few weeks, it’ll lean more towards excited. But the March 1st date seems to be sticking. I saw the bus driver this morning testing out the route and we chatted and confirmed the time and date of the first pickup. I keep getting weird conflicting messages about the bus, but again, it should be OK.

We also had a group zoom tour for returning families of the classroom with blue tape marking out each of the kids’ bubble. Only a handful of kids are coming back in Edda’s program and there are (I think) only 2 special needs programs at her school. So for the first month, there will be fewer than 20 kids in the building. The rest of the school is phasing in over the next two months. About 50% of the kids (student population approx: 2400) said they wanted to go back in person and the typical kids are doing a hybrid model where only half of the half who wanted to go back are in school on a particular day. So the school should never be at more than 25% of capacity. Also they cordoned off Edda’s special needs program so none of the general population of kids will go through that hallway.

Fingers crossed. xoxo


There is a moment right before we go to sleep when we try to shrug off all the pandemic worries of the day and attempt to figure out something to talk about besides all the things we are actually thinking about. It’s a weird race between us to find the funniest videos that we’d seen during the day. Usually, it’s animal videos. Jeremy shows me videos of italian greyhounds doing fashion commentary. I show him guinea pigs playing tug of war.