Friday, April 26, 2019


I have to migrate the blog.  I've been very lucky that for 17 years, I've been able to use the same platforms - blogger and flickr - to do this little hobby of mine.  Now I've realized, slowly and painfully over the past month or so, that I'm not really able to upload photos effectively from my very new iPhone to the very old Flickr.  Vince and his friend took well over 1,000 photos on his China trip and it was a combination of getting those photos onto Flickr and trying to put together that blog post that was upsetting to me.  I'm not sure quite what to do.  I have well over 100,000 photos on flickr.  I'm afraid both flickr and blogger will become obsolete before I figure out how to do this.  Years before I was kind of OK with this disappearing into the ether, but today, I'm feeling needy and I want it to stay around.


Sunday, April 21, 2019

Recap of LA trip.

We are home and I'm fighting a head cold.  It crept up on me on Thurs/Friday, but it was the worst on the flight home and today, I'm just trying to rest and sleep but really, I think I'm just making my jet lag worse.  Jeremy is at Dulles now picking Vince up from his China trip. 

Quick photo recap of the vacation.  Jeremy took most of the photos and I'm trying a new workflow for photos since my flickr uploader seems to not be working from my iPhone.  So here goes:

Lunch in the Burbank hills at a place called Castaway with Eva and Nancy.   Talked a lot about biking and drug/medical device development.  Had half a mimosa. 


Castaway has great views,  Edda's not impressed.



Then Jeremy went to Minnesota for a few days - those days are documented in the previous blog posts.

On Wed, he came back.  We went to Tree People where Julia and Katherine began their friendship:


Edda walked a good bit on the trails:


Wed night we had a dinner party of 10 (?) no photographic evidence, oh well.

Thursday I took public transit (Expo line) to downtown LA to meet up with Ruth for a swim at the Los Angeles Athletic Club.


The swim was in a pool on the 5th floor.  I'm always astounded by pools high up in the air.  We had lunch at the club, this was the only photo I snapped. 


While I was swimming, Katherine, Jeremy and Edda went to visit Barbara and her in-home dog sitting business.  Seems like a lot of fun.



I came home and napped with Edda, Jeremy and Katherine went to visit Miwako.


Fun old photos of the families:


This was the first time Jeremy traveled with his bike.  It was an adventure in packing, paying luggage fees, breaking down and rebuilding the bike.  It didn't get damaged in transit, it got damaged at Julia's house where he left it outside when he went to Minneapolis and it fell over and got a dent in one of the carbon fiber shafts.  He rode up Mount Wilson on Friday while Edda and I found Europane, our wedding pastry provider and enjoyed blueberry brioche and a cheese danish.



From the Mount Wilson triumph, we met up with Aunt Liz at Ding Tai Fung.  Turns out there are two locations within a mile of each other and we managed to confuse the two.  Delicious soup dumplings and lovely to catch up.


Feviu came over for dinner on Thursday night:

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Today, back home!   Celebrating Easter with Nat and her family.


Wednesday, April 17, 2019

Getty, Shanghai.

Every day in California is glorious.  In the mornings, Julia - our host, walks outside onto her porch wondering what the weather is going to be like that day.  I laugh and say, it is just different shades of absolutely beautiful.  Because of the heavy winter rains, everything's green and in bloom.  There is not a trace of humidity and nothing feels better than taking a nap in a patch of sun.  Oranges and lilies grow in Julia backyard.  There is even a pet turtle that wanders by.  I eat chocolates from Trader Joe's. 

On Tuesday, we made it out to the Getty where we toured the gardens.  There were so many usual and unusual plants growing in the garden.  We were looking for the Shazam! app for plants, but we couldn't find it.  There was a family of ducks swimming around the central water pond thing and I commented that this fowl family had the best real estate in all of Los Angeles. 


Edda was not impressed.  OK maybe she was impressed, but didn't want to acknowledge it.


Going to the galleries was an afterthought, we were a little short on time and had to skedaddle - but we went and saw Vincent's famous Iris painting. 


We are getting hundreds of photos from our Vince's China trip.  I'm having trouble downloading photos, but my parents did manage to see Vince and his friends at my mom's high school and they spent the day in Shanghai.  Will post some photos soon.


Tuesday, April 16, 2019

LA update.

We are in Los Angeles for spring break.  Well, right now, Jeremy is in Minnesota because after we scheduled the vacation, a work commitment cropped up that needed committing to and Jeremy flew out of LA to Minn on Monday and will be back tonight.

On Monday, I visited Charlotte.  Bella was there and we talked about the grandkids getting married and various adventures.  I'm so happy I had the chance to catch up with Charlotte.



In the afternoon, Katherine, Edda and I went to the Santa Monica pier.  Edda enjoyed watching the waves.


We enjoyed some ice cream and walking along the boardwalk.


We saw Shazam in an almost empty theater and then ate a delicious meal at the True Food Kitchen.  Very vegetarian/vegan.  California is delicious.  I'm having a good time.  I'm hoping to get some naps in.


Sunday, April 14, 2019

Spring break.

We are also on our own spring break trip, but first I needed to stop off at the hospital to pick up my new work schedule.  I needed to find out if I was scheduled to work while I was in LA because though I put my vacation time in and the scheduler said - I got it!  Don't worry about it!, I have often had other days off I put in the system mis-scheduled.  It was also a chance to introduce Jeremy and Edda to my coworkers.  I'm a bit self conscious introducing Jeremy and Edda to my coworkers and Jeremy knew this and asked are you more self conscious about me or about Edda?  It's hard to say.  I pass as younger and goofier without Jeremy at my side even though I make no effort to hide my real age or how seriously I take my responsibilities. And Edda, well, she's Edda.  I have told people at work that I have a special needs daughter, but it's another matter to bring her to work.  It was fine and lovely visit and I'm not scheduled to work on my vacation and Jeremy saw the negative pressure room and the Pyxis.

Edda tolerated the flights very well, she didn't make a ton of noise and she didn't kick the people in front of her.  She managed her bowels well (we hope for no pooping on the plane because the airplane toilet stall is not made for two people).  So bowel-ing happened on the ground in a large bathroom stall.   Wonderful!


We are getting constant photo updates from Vince.  They seem to be having fun.  Beijing doesn't seem super polluted or unbearably hot. 



Friday, April 12, 2019

Off to China.

And they are off to China.  Lucky kids. ha ha.  Twenty eight kids from the high school and one big bus to the airport.  They just took off from Dulles headed to Beijing.  My parents are already in China ready to intercept them en route at my mother's high school.  I'm not sure how well that is going to turn out, but what the heck?

I laughed so much about the little cultural mismatches.  The leader of the trip is a Chinese mom of a RM alum - she runs an after school enrichment program and has done many, many exchange trips between China and the US.  She is already in China texting the whole group -- it's cold!  you all must pack jackets!  It's like lows of 50s highs of 80s.  No American HS kid is going to wear a jacket as you see all the US kids walking around in 30 degree weather with only a hoodie.  The Chinese mom/leader was also answering questions during Q&A sessions - such as - are our kids going to have any free time to explore on their own? (hoping that they will have the time). And the leader is like - absolutely not, no way, they are going to be supervised at all the time and there will be a fence around them that will encircle them.



Photos from the plane:


Vince re: Edda:


Thursday, April 11, 2019

Safe staffing levels.

One of the things that I love about my job is that most of my co-workers are immigrants.  A bunch of the senior nurses are half a generation older than me, their kids are in college or grad school.  I can hear the pride in their voices as they tell me - she got an internship at Microsoft or she's going to be an ob/gyn or anesthesiologist.   Often these nurses not only work the regular 3 shifts a week, but pick up 2-3 shifts at another hospital.  No one wants their kid to be a nurse, lol.  But my favorite story is this: 

I have a coworker with three kids, each kid going to an impressive big name college.  The baby of the family decided to go to Swarthmore.  She leans in and asks - have you heard of that college before?  And I say, yes, I have!  Very impressive.  Then she goes on and says, then she majored in English and met this boy who majored in political science and Spanish and then they went to NYC to work for something called Teach for America.  And she shook her head.  He's a nice boy, but he will never have any money.  They will never have any money.  Did I nod?  Maybe I nodded.  And then she said and then she decided to go to Hopkins and become a nurse!  Can you believe it?  She's now a nurse at an ICU in NYC and she tells me all the time how hard it is to be a nurse.  My daughter didn't really understand it before.  And I laughed. 

A few days ago, I asked how her kids were doing and if her daughter was still doing OK in NYC at the ICU.  And then she showed me texts from her daughter holding up up signs protesting outside her hospital for safe staffing levels and texting - "I was born for this!"  And there you go, NYC nurses.  Good for you.

Monday, April 8, 2019



The taxes are mostly done.  Somehow I have a snafu and can't e-file, so I have to mail them out.  But they are done and we owe, but I knew we would owe so that isn't a surprise.  It occurred to me the other day that in a year, if Jeremy and I both died together, we could give our whole estate (estate sounds weird - as if we owned a castle.  I mean, my home is my castle, but I mean a castle with hounds and horses) to Vince.  Of course, the whole thing is complicated with Edda and her care, but putting that aside, I mentioned it to Vince.  He was first like - if you guys died, who would I live with?  I said - well, if it happened next year, you would live on his own because you'd be your own person.  Then he said (eyes widening a bit), oh yeah, I'd be my own adult.  Then he said wow, I'd live in the house?  It'd be pretty big for just me.  I said that he could probably rent or sell the house and then live in an apartment/dorm near college.  But then we talked about how that might be a bit much to handle as a college junior, especially if Edda needed care coordination.  Even though it would be a lot to handle as a 20 year old, I think Vince could do it.  It wouldn't be the best thing ever (as we'd be dead), but I think he has a good head on his shoulders.  Edda is a whole 'nuther story. 


Vince's play was great and a nice Friday night outing.  I don't think I've ever sat through a performed Shakespeare play, it was pretty funny.  They always do a great job.  Edda was home with Nat, Dara, Ning and Brian.  I ordered in Chinese food for them and they had a nice Friday night together.  At the play, it's always nice to catch up with other parents.  Now all the conversations are about college.  I spoke with a parent who is on his fourth out of sixth kid off to college.  I told him he must be a pro at this, but he said each kid was so different that it kind of didn't matter that he'd gone through it before.  There are whispers of kids not getting in anywhere, there are kids who got in everywhere.  I just want Vince to get into somewhere that he's excited to go to.  MCPS offers a free SAT to all students, Vince is going to take it tomorrow.  I feel like I can offer him only so much advice (same thing I feel about vaping and drugs - I have no idea), the landscape of college admissions has changed so much in 30 years.  Thirty years ago, I didn't even contemplate not getting into Berkeley or Michigan and now those schools are very difficult to get into. 




I still have so much work to do before spring break.  Taxes are still not done.  I still have two more shifts at the hospital.   First world problems. 

Thursday, April 4, 2019

Midsummer's night dream, opioids.

Vince's drama club is putting on Midsummer's Night Dream tomorrow night.  I thought I needed to brush up on the plot a little before I went to the play, the language is going to be hard enough for me to follow, so I wanted to know at least the names and the general plot.  I struggled with The Real Inspector Hound, it would have been better if I had gone through the cliff notes first.  Youtube is awesome.  I wish youtube was around when I was taking differential equations.


I've been rethinking my role in the opioid addiction crisis.  I have a small, but I think, semi-critical role.  Every surgical patient I discharge is given a prescription for opioids.  Sometimes it's oxy, sometimes it's percocet and sometimes it's vicodin. I don't decide whether they get the prescription, I only get to tell them about the prescriptions that they get.  I actually hate handing over the printed prescription, especially for people who might have had a couple of narcotic doses right after surgery, but for the last day or day and a half, they've been doing great on Tylenol or Motrin or even nothing.  A patient who has been on no pain meds for 18 hours is still sent home with an opioid prescription.  For the first few months I was on the job, I told them - this is a narcotic.  Take it only when you need to.  Then the second few months, I told them - this is a narcotic.  Take it only when you need to.  It is habit forming.  Just this week, after reading about the Sackler family, I changed my wording to say - this is a narcotic.  Take it only when you need to.  You probably don't need to given that I've only given you Motrin for the last 12 hours.  This is an addictive substance. 

I regularly have patients who are addicts.  I regularly have patients who refuse all narcotics even after major surgery and they are clearly in pain.  For the majority of patients, the narcotics work well for pain control in acute situation and they have no trouble transitioning to non-narcotic pain relief.  But I have had a few patients who have not had narcotics before and under my care discover that they like the narcotics and begin asking for them more frequently than I think they need.  I follow the dr. orders whether it's every 3, 4 or 6 hours.  But when a patient becomes aware of that dosing schedule and starts calling 15 minutes before the next dose or they might not call, but they kind of ask hopefully for the next dose, I have a sinking feeling about those patients. Those are the ones that I think about when I fall asleep at night. 

I took Percocet for my c-sections.  For Vince, I refused it for a long time not because I thought I'd get addicted, but because I thought it would get into my milk for Vince, but I did finally take a dose which did allow me to rest and regain strength.  For Edda, I think I took it right after the surgery for a day without convincing.  Edda took oxy? or vicodin? for 10 days following her spinal fusion.  Of course, I wasn't worried about her becoming addicted to it because she's unable to get it herself, it was more important to me that she was comfortable because I think she did not understand what was happening to her. 

Monday, April 1, 2019


Edda's stairlift is fixed.

I often have misgivings that I am doing such a female dominated field like nursing (they really should change the title of the position to medical associate or something - they did it for stewardess), but I took great pleasure in showing up at Home Depot yesterday smelling like sewage and asking the salesperson - hey do you have a 2" sewage ejection pump check valve?  And Jeremy did cook for 100 the other day, so gender roles are all upside down here.  But sometimes not really.

The plumber did call today kind of apologetically saying my voicemail didn't pop up until this morning.  He sounded like he would have come over yesterday if he had gotten the message.  He didn't know what the white crap was either.

The taxes are still not done.


Sunday, March 31, 2019

Sewage ejection pump, Sarah's birthday, stairlift.

I could not let a broken sewage ejection pump lie.  I did call the plumber this morning and left a message on his voice mail and then tried to take a nap, letting the broken pump just stay broken.  But my nap was constantly interrupted by thoughts like - 1) it's Sunday, the plumber is not going to call you (he didn't), 2) you probably can do it yourself in like 45 minutes (it took 4 hours) and 3) even if you start and fail, the plumber is on his way already anyways, so what is there to lose? and 4) OMG, I'm totally going to be knee deep in shit for a long time and I only like to be knee deep in shit when I'm at the hospital and not during my own nap time.

So I watched a few youtube videos and felt trained enough and I went in.  I started with this:


A sewage ejection pump is exactly what it sounds like, it takes dirty water from the toilets and sink from below ground (the basement) and collects it in this bucket in the ground and when it fills to a certain level, it pumps it up to the ground level sewage.  It had stopped working - everything backed up,  the basement was slightly flooded.  Initially Brian thought the toilet was backed up, but the pump is located outside their apartment in the common area of the basement and he didn't notice that the whole sewage system was backed up. 

I will spare you photos of my work - I started myself by lifting the cover off the pump bucket and using our wet vac to suction out the sewage in the bucket to try and reach the pump.  After about 30 minutes of this on my own, Brian (bless his heart) pitched in and helped me suck and dump bucket after bucket of sewage out into the backyard.  Finally, we got to the pump - it seemed like the pump and the bucket were all coated with a deep layer (like 6") of white debris.  We couldn't decide if it was hard water deposits or grease buildup or toilet paper build up.  Anyways, we scraped the debris from the sides of the bucket and the pump itself.  It's a small space, it's really smelly and we needed to contort to get the pump in and out and to scrape out all the debris.  As we were working, Brian and I traded stories of our dirty jobs.  I started with stage 4 pressure ulcers that needed dressing changes, he countered with back of the house restaurant clean-up work. 

Brian and Jeremy convinced me that we could rescue the pump which turns out, really wasn't broken, just covered with crappy crap and couldn't pump with all the crappy crap in the bucket and as soon as we rinsed it off and cleaned out the bucket, it seems to be working fine.  Brian and I reinstalled the now-clean sewage ejection pump into the now-clean sewage ejection pump bucket and tested it out.  I told Brian after we finished (well it's not really finished, I still need to order a few parts online) that if we weren't friends before, we were certainly friends now.  Jeremy, who spent the afternoon working on his bike and consulted in on our work, every once in a while would take a whiff of me and tell me that I smelled bad.  It was no joke.  I smelled bad.


I have never, ever wanted to take a shower so badly.  And I took a nice long one right before we went to Sunday night dinner where we celebrated Sarah's birthday with Lauren's cake!  I rarely ask for an alcoholic drink, but I really wanted one tonight and happily took up Colleen's offer for a tequila sunrise.  Yum!


And then we came home to a broken stairlift.  Argh.  I'll have to get new batteries tomorrow.


Sump pump. Dinner.

Argh.  The sump pump in the basement just broke semi-flooding the basement and leaving our tenants without water.  I do a lot of plumbing, but I don't do sump pumps.  I really want a nap, but I'm not sure when it is happening today.  Jeremy and Vince did cook for 100 - really 120 last night, but less than 60 people showed up.  It was a little disheartening.  We gave a lot of it away this morning to the homeless shelter - I'm hoping they enjoy the pork loin and chicken and mounds of potatoes.  It occured to me that Jeremy has cooked for 100 twice in the span of 8 days.  We really are sliding into a few months of crazy scheduling (I pride myself in under-scheduling, I like staying at home and watching Netflix for a long time). 






Everything was delicious (of course). 

Friday, March 29, 2019

Dentist, Scout dinner, Bike ride.

I took Edda to the dentist on Thursday morning.  Usually I manage to get someone to come with me, but everyone was already committed to spending their time elsewhere and I got to go myself.  Jeremy assured me not to worry because he's done it before by himself, so I wasn't worried - honestly, no worries.  But I should have brought someone.  Really, it's one person to hold her limbs and another person to steady her head.  Then the dentist and hygienist can do their jobs.  So we were one person short and Edda was in a thrashy mood so I straddled her body to pin her arms and then used my hands to hold some dental tools for the dentist while she tried to steady Edda's head with the crook of her arms.  Edda managed to kick pretty hard since no one was manning her legs and sent some kiddy chairs flying.  It was not relaxing.  And we are not doing a good job cleaning her teeth so we are back to checkups/cleanings every three months.  I think Edda is holding more food in her mouth - less able to clear it in the back of her cheeks.  We are going to implement the two person tooth brushing when possible.  We'll see how that goes. 


Jeremy took the day off today because he's cooking dinner for 100 tomorrow so today he needed to go to Costco and do food prep.  But first he cleared out our dryer vent.  I spent the day working at home closing out the quarter - eeeking one last thing that needed to be done.  Look at that forehead vein.  I just want to put an IV in it.  (I'm still terrible and terrified at inserting IVs, the IV team person told me to stop practicing on myself.)


Why is Jeremy cooking for 100 tomorrow?  Because he signed up to cook the annual scout banquet.  I honestly don't know what happened, but when Vince was in 2nd grade and I wanted him to join scouts because a bunch of his friends were in scouts, Jeremy balked at the idea because it was too military-like and they - at the time - discriminated against gay scouts and leaders and although our troop never honored that national policy, Jeremy took one look at little, tiny 8 year old Vince in his cub scout uniform and thought it was a bad idea.  And now, like a decade later, Jeremy has a uniform, he's cooking for the scout banquet, coordinating the big summer hiking trip and he's going to all the meetings and has a lot of work to do for the scouts.  He is kind of bewildered himself.  He's like - how did this exactly happen to me? 

Of course, he's cooking the way he wants to cook - not the way they've always done it.  He ixnayed the Salisbury steak and store bought veggie lasagne.  He decided to make pork loin sous-vide.  He's making homemade croutons for the Caesar salad and I think he's making homemade salad dressing.  He's crazy.  This is one of three lasagnes he made this afternoon.  Now he's trying to figure out how to put three giant pork loins in a tub of water so he can sous-vide them. 




Vince started his biking club this week.  They rode around the Millenium trail (about 10 miles).  He managed to 1) get bit by a friend's dog on both his hand and his leg and 2) stop for ice cream.


Thursday, March 28, 2019


Ruth came by last night for dinner.  I was worried that I'd miss her since I was working, but I managed to get out relatively on time so I snagged a few minutes with her (and Jeremy too).


I tried on Ruth's crazy dyed peacock feather hat from the 60s.  This photo does not do it justice.



I had a terrible shift on Sunday and then a few good shifts on Tue/Wed.  I love it when my patients make me laugh and they often do.  Now I have five days off in a row!  A dream.  It's like a vacation.  A vacation to do taxes.  I'm looking forward to it.

Monday, March 25, 2019


My kids are 15 and 17 now.  I can't believe that it is true, but here we are.  Edda's pancake breakfast was wonderful, a lively event.  We used Evite for the invitations for the first time and I think that decision resulted in an excellent turnout - we had about 100 people RSVP yes.  I think we had been on a downward trajectory in terms of attendance, so this well-attended party even during a low social year for both of us was a boost.  I'm so happy both sets of grandparents were able to attend.  My father especially had a great time - I think this type of party does lend itself to his personality.  We invited a lot of people who have been with Edda for a long time going back as far as we can, so it's nice to see old caregivers and therapists and teachers who haven't seen each other in a while hug each other and catch up.   Vince, I think for the first time, extended the invitation to his friends and a big handful of them came and pitched in with the pancake production.  Lauren made a beautiful, delicious cake which we served at the peak of the party (11:30 am) and was quickly devoured.  I, of course, ate nothing the whole time.  I almost never eat until everyone leaves and then help myself to two or three pancakes and a couple slices of bacon, a big slice of cake and then I put my feet up on the coffee table sitting next to Edda and sigh a long sigh.


It's hard for me to think clearly these days, I don't have much time for myself.  When I do have time for myself, I do spend it scrolling through instagram or napping.  I find it hard to trust my own feelings these days because often I feel like my feelings are misleading me.  I often have negative or semi-disastrous feelings about situations or interactions and in order to not be consumed by them, I back up and try to reframe them or tell myself, it's really not that bad or it's really not the true story, but then what feelings do I rely upon to make judgement calls?  It's hard for me to say.  This is a long, winding story about how do I feel about Edda turning 15?  I'm both happy because she is happy and I'm still incredibly upset that this is happening to her.  Is it still happening?  Rett Syndrome - is it still happening?  Or is it in the past tense and it has already happened?  Then I feel badly because Edda is doing so well in many ways, so well that we manage to have a pretty predictable life. 

Saturday, March 23, 2019

Pancake breakfast.

Edda's pancake breakfast was today!  More later.  I'm going to bed.




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