Month: May 2017

On Mother’s Day morning, Jeremy & Vince were still out camping and Edda and I were busy baking a date cake for guests who were coming over at noon.  It turns out that I’m not a very good baker.  I made the Barefoot Contessa’s sticky burbon date cake without the burbon (recommended by Vickey – the best cake ever!  with whipped cream!) and it probably would have been good if I had managed to bake it all the way through.  Anyways, both the guests and the boys were scheduled to come through the door at noon, but the guests arrived early and the boys arrived late and (even though I do love our guests, one from NYC only for the weekend) and I had my semi-deflated date cake to serve, so, you know, it was a little embarrassing.  Ack!  I need to try the date cake again.

Jeremy & Vince did come home eventually to help me out, and they did give me my Mother’s Day gift which was a very nice compass.  Did you know you can spend more than $8 on a compass?  Yes you can!  And it’s from Sweden and it looks exactly like it’s from IKEA.  Even the instructions look like they are from IKEA.

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In a week of dullness, I’ve had to attend some mandatory test prep classes at school all day all week.  It’s a “test strategy” course where they tell you how to think through the problems without needing to know content.  It just seems easier to know what are the right blood gases, what hypokalemia does, and what to do when a pregnant lady suddenly announces that she’s dizzy.  From this photo it looks like I’d rather be at a dance party.  Which is true.

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Irises!

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Edda has a rash exploding all over her face.  It started last weekend when the weather changed and her wet bandana was in contact with her skin and now it seems to have spread across her cheeks to her eyes/lids.  Eczema?  Fungal? Poor girl!

Got some photos from Jeremy from the weekend scout campout.  It was forecasted to rain all day today, but the boys lucked out with cloudy, cool weather.   They biked about 25 miles as a troop and Jeremy then added on a 2nd ride for himself in the afternoon while the boys were minded by other adult chaperones.

After the last campout, where I observed a breakfast of pop tarts and a  dinner of cup of noodles, I asked Vince if maybe he’d like to grill some burgers for dinner or maybe make a bacon, cheese, egg muffin sandwich for breakfast.  This is to a boy who I find in the kitchen late at night mixing all our spices together to make a marinade or who has made the “most delicious sandwich” of a perfectly poached egg, a made from scratch seasoned mayonnaise spread, avocado and melted cheese on a toasted challah roll.  Vince, at first, was a little bit miffed that I would suggest they give up their beloved Pop Tarts, but in the end, he did decide to make fajitas and breakfast sandwiches.  Here he is cooking on an open flame.

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While Jeremy was out camping, I made an appearance at a local (in the neighborhood) Common Cause fundraiser.  Normally not my jam (not meaning that don’t agree with CC, rather meaning that I’m awkward at various events where I have to maybe make small talk about politics and I find it all impossibly impossible), but Jeremy wanted to go support his pal Tom Moore (and I guess he’s my pal too) and couldn’t because he was out biking and asked if I would go in his place.  Actually, Jeremy did not ask me to go – he just let me know that it was happening and let me infer from his letting me know that he was asking me to go.  “Not that I’m telling you what to do with your weekend,” says Jeremy.  lol.

Here’s Cheryl Kagen, our Maryland State Senator.

Jamie Raskin showed up, our Congressman who took over Van Hollen’s vacated seat.

I saw my beloved Ken Sandin who is working on single payer insurance advocacy.

Just a reminder!  In case I was going to forget.

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I’ve found myself carpooling more this week.  I don’t mind as it means I’ve got slack in the schedule.

I had to do the loop first at the high school and then loop back to the middle school.  Even though I was 20 min early at the middle school, I was not the first in line.  I asked both Vince and Sam if they it was at all possible to be first in the carpool line – they said there were some very determined people.

Boys are off biking / camping in the rain this weekend.  

Sorry, this selfie is in the bathroom at Comet Ping Pong.  Last night, I put on my best pantsuit and went downtown to celebrate the publication of Pantsuit Nation at Politics and Prose downtown.  I went because my friend, Lauren, was selected to be featured in the book.  Her entry was about her daughter, Molly, one of Edda’s Rett Syndrome sisters.  Lauren didn’t have prepared remarks, but she spoke from the heart and then read her post which was originally on Facebook.

A number of contributors were there – writers, photographers, and people whose photos appeared in the book.  The book goes chronologically from the few weeks before the election and then through the election aftermath recording the feelings of everyone who posted on the group.

Here’s the photo of Lauren and Molly.  <3.

We took Edda to the see her surgeon today – Dr. Oetgen. He took a look at her back and described what he’ll do to Edda during the surgery.  Gentle traction will be applied on her head and her legs to lengthen her back and he’ll make an incision down her back and use screws (titanium) and rods (cobalt chrome) to straighten her spine and lengthen her body as he goes with the traction machine.  Some cadaver bone grafts will be inserted too to help the bones grow and fuse together.   The critical decision to be made in Edda’s surgery (based on the way her back is curving) is whether to fuse all the way to her pelvis or to leave a little bit of space between her pelvis and the end of the rod.  If he leaves a little space, there is more mobility in the spine for Edda which will allow her to more easily move, but there is a risk that that part will curve and will require a 2nd surgery in a few years.  The 2nd surgery would be simpler and shorter, they would just extend the rods.  We agreed to leave the little bit of space to give Edda more mobility and risk the 2nd surgery later on.

We got a last set of X-rays…

I’m exchanging exciting texts with Edda’s teacher b/c we are messing with her input and outputs with iron and stool softener.  Poop emoji!

Happy National Nurses Week!  A tradition that I’ve been waiting four years for is to decorate my student scrub top.  I made one of these – I’ll let you guess which one.  I hear there is some sort of competition and I’m hoping to win.

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Second violin lesson of the week.  We are doubling up until the recital.

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Sometimes the sky is beautiful!  This photo doesn’t do it justice.

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The line was too long at the ice cream place, we left without having any.

Edda’s appetite has improved steadily over the weekend and by tonight, Sunday night, both intake and output are as they should be.  We’re spiking her orange just with both Miralax and iron supplements.  Big poop tonight (!) and we are good to go to school tomorrow.  

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Jeremy, now a concerned scientist regarding his flexibility,  is at all moments of the day dreaming about becoming a contortionist so that he can tuck himself into the form of a fish to glide through all the wind resistance while sitting atop his bike.  The first step in doing becoming aerodynamic is to be able to touch his toes which, I have to say, he pretty much can do now.  Though I think this feat involved a long 30 minute routine of stretching each part of his body before attempting this toe touching.

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While he was busy trying to touch his toes, all the following bike related items arrived at the house.

And now I’m the proud half-owner of a bike stand.

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I went with Vince to his violin lesson.  Because I’m good friends with Kelly, his teacher, we spend most of the lesson time chatting and not lesson-ing which I think is OK with Vince who spends the time scratching Inky the dog.  Vince’s recital is the day after Edda’s big surgery and she’s scheduled to be in the ICU that day.  Will he make it to the recital?  The hospital can be either incredibly boring and incredibly exciting (often not in a good way) so we are hoping that it’ll be incredibly boring at the hospital and Vince will be able to make it to recital.

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Vince, today on and off pissed off at me, came into Edda room in the afternoon while I was quilting and Edda was watching TV and asked if he could hang out with us a few moments.  I’m always a little surprised about these request (especially if we’ve spent the day exchanging snarky snarks) and honestly, I’m happy he still seeks us out to hang out with.

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I miss a good camera, I use the iPhone camera all the time now and nothing else, but it’s perpetually unsatisfying to me.  I borrowed an expensive Sony mirrorless full-frame camera from Seth (five years old now) and took these last photos.  I’m not sure it’s the camera that I want – it’s still a little big.

Jeremy is having a love affair with biking.  We talk a lot about bicycles, hamstring flexibility, time trials, power meters, and Strava.  There is always a youtube video playing in the background of some bike race where Jeremy urges me to come over and “take a look at this!”  He’s signing up for week long bike trips, bike weekends and dreaming of the next bicycles he’s going to buy.  It’s good, mostly, until I see how many weekends and summer weeks I’m trying to schedule Edda-care around Jeremy’s excellent biking adventure.  He wants to add days onto business trips to CA to bike in Napa or near Monterrey. Then I start to get snippy and whiney and petulant.  I know it’s not entirely fair, I have my own things I want to do that take time from the family and result in things that are logistically complicated.  Anyways, I start making a fuss about the biking and then he reminded me that his work work (meaning his regular day job) is so frustrating and discouraging to him right now that he needs to divert some optimism and excitement to something else – so that something else is biking.  Then I let him be.  At least until the next time I get irritated.

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Vince made some cheese/corn dip concoction for our dinner party this evening.

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Rachael came over for dinner!  Somehow we talked a lot about summer camp.

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I’ve started on my 2nd quilt.  This one is black to match my mood.  😉

They posted a goofier picture on the Facebook group and I think, true to this cohort’s personality, that it’ll go on the official wall of graduates. I am overcome with this need to put everything down for a few days, to take long naps in a warm patch of sun, to read crime mysteries in which the bad guys get caught and good guys win in the end, to eat simple meals and to sleep 10 hours a night, but it’s not happening and I’m not really sure the next time it will happen.  I say a few days, but I think a week is really the shortest time possible to totally unwind and relax back into a fully calmed person.   No, I do not want to go to Paris, glamping, see the northern lights, fight for a reservation at Pineapple and Pearls, or the exhibit down at the Hirshorn.  I want to rest and reduce my concerns to that of a baby in her mother’s arms – am I warm? am I clean? am I fed? have I napped? have I been hugged?

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Edda stopped eating on Wed night. That was the day I took her to Children’s Hospital for the pre-op consult and a pediatrician there did look at her throat and noted that it was a little red, but nothing significant.  By Thursday night, the poor girl was both constipated (from the iron) and not eating from her sore throat.  Jeremy took her to the doc on Friday and by then, her throat was angry with inflammation and pus.  She stayed home that day and she’s slowly regaining her appetite.  Vince was out with friends on Friday (as a side note, I think I’m being shoved off my pedestal at the most important female in Vince’s life as we speak) and Jeremy made me liver & hard cider for dinner – a dinner that I enjoy, but really not possible to be served to any guest who populates our table most nights of the week.  Edda enjoyed some of the hard cider.  She had about an inch of it before she frowned and told us – this is kind of good and kind of weird at the same time.

My cohort!   I’m not sure I can really say that because I’ve traveled through 5 different classes in the last four years, but this cohort is a fun one.  We had one final poster presentation today (which went fine) and as we were all dressed up in professional attire, they took a class photo.   I loved every minute of it, I never wanted it to end – I met so many great people, I learned so much.  My first bachelor’s degree was all about pressing to the end, trying to ace everything, do everything perfectly, finishing things quickly to get to the next, supposedly better, thing.  It was the right thing to do then, but this time, I really relished all the people & all my clinical experiences – this time I knew I wouldn’t have a chance like this again in this lifetime – how many more times will I be able to be invited to a bar with 40 college kids again?  Never.  (I was invited, but I didn’t go.  Because I still don’t know how to have fun.)

You saw Jimmy Kimmel’s monologue about his about baby?  Who noticed first that there was a problem?  The nurse, of course, who was doing her regular hourly assessment on the baby.  Go nurses!

Jeremy thought that in the last blog, I was insulting the nurse practitioner by not calling her an actual anesthesiologist.  I had to explain to him (and now to you) that I didn’t mean to slight her.  The nurse practitioner was the first person to walk into the room and introduced herself as part of the anesthesia team and that she would be doing the intake questionnaire on Edda.  And my first thought was – YES!  We are going to have a nurse anesthetist do our anesthesia.   I loved her, I wanted her to administer all the methadone/morphine and monitor her breathing and take care of Edda during the 6-7 hour procedure.  So at the end of the 20 minute discussion, I asked, so are you going to be Edda’s anesthesiologist?  And she said, no, I’m not and actually I don’t administer any anesthesia ever, I’m in charge of all the clinic intake for all surgical patients for the anesthesia group.  So the nurse practitioner is actually not an actual anesthesiologist.  So then 15 minutes later, the actual anesthesiologist came in and continued the anesthesia conversation.  When I said the word “actual” I was differentiating between a person who regularly puts people to sleep and wakes them up again vs a person who has never done that and not differentiating between an MD and an RN.