Thursday, May 25, 2017

Ready, youtube.

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Hello loves.  Tomorrow is the big day.  We are ready.  We've supplemented with iron the whole month & we managed to have a huge poop at 8:20pm.  Edda's gut is clear in anticipation of the constipation-inducing pain medication.  Edda is in good spirits.  I was, this morning, feeling incredibly nauseous and awful, a physical manifestation of my emotional state.  You know how, before you have kids, you promise yourself that you'll do anything for your kids as long as they are OK?  That you'll walk across the flames of hell or climb the icy slopes of Everest or be the WH press secretary to an insane person (ok, maybe not that.)? I know it's not really rational, but this past month I've felt like I screwed up that promise in the very first moments of Edda's life.  That when she was just a little zygote in my warm belly, I started her out with such a great disadvantage, how could I ever make it up to her?  Anyways, I think she's going to be really pissed at me tomorrow at about 4pm when she wakes up, but I'm hoping she will be much more comfortable in the long run.  It's a big surgery, but it's a routine surgery.  Every Friday, our surgeon opens up the back of a child and bolts a bunch of rods down his/her spinal column.  To him, it's marks the beginning of the weekend, I suppose.  I'm lifted up out of my moody mood by my family and friends.  Edda's charmed many people in her life and they are all calling and texting to figure out when to visit and when to help.  I'm grateful.

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Vince has been (after electronic curfew) crawling into our bed to show us famous you-tubers.  We had the corgi/weightlifting guy a few weeks ago, but he only updates once a week.

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Now we are watching some other dudes.

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Wednesday, May 24, 2017

Volt, platelets, body pillows.

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To really celebrate my graduation (btw, thank you all for the congrats in the graduation post), I went out with 3/5 of the usual suspects to Volt in Frederick.  I wish 5/5 of the usual suspects could have made it.  <3.  We talked a little bit about Edda's spinal fusion and what I should bring & what I should expect.  Soojung told me the hospital (Hopkins) gave her a PCA pump (patient controlled analgesia pump) to control pain medication dosing for Alice so she'd wait for Alice to show signs of pain and then she'd push the button for her. But Soojung always thought the pain med administration was too late - that the outer signs of pain meant that Alice's pain was very high and that she wished she could tell when the pain would just begin to increase so she could administer the med early.  Lauren mentioned to be prepared that the PICU for the first night might not be a private room, but the room on the regular floors were spacious and always private and that I should bring extension cords and a small bedside lamp and a fitted sheet.  Lauren also said because Edda'll be face down during the surgery and they are pumping fluids into her, her face'll be pretty swollen and misshapen when she comes out of surgery.  Does this make the dinner celebration sound sad & solemn?  It wasn't all about the surgery, we also talked a lot about other non-hospital related stuff and it was great to celebrate with the U.S.

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The medical bills are rolling in.  From the four specialties we saw: hematology, cardiology, pulmonology and neurology our cardiology appt was the most expensive.  Granted, we did have an EKG & echo done at the appt, but still - it was only 40 min long.  We are very lucky to have the medical coverage that we do - Edda actually has two sets of insurance, the one through my work, BC&BS for Federal Employees and a Medicaid waiver.

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I somehow took a random photo of my foot on the track on Tuesday.  I love the track and I can also hate the track.  I thought this week, I'd be swimming in extra time because I no longer have school, but it's not quite true.  Vince is on an off-schedule this week with mandatory testing for other grades.  He didn't have to go in until noon M-W, and I'm trying to pick up extra carpool shifts because I'm abandoning it completely for a few weeks, so I'm dropping off at noon and picking up a couple hours later which seems like no time has passed in between.  I'm trying to finish stuff at home and at work so I can leave it alone for 7-10 days and not think about it.  Today, I got a few phone calls from the hospital, one to tell me that Edda should be at the hospital at 5:30 am on Friday and not to eat after midnight.  Then 2nd was a complicated phone call from a hospitalist who was concerned about her low platelet numbers.  Should we do another blood draw tomorrow (Thurs) and recheck the numbers?  Or should we do it the morning of in pre-op?  I knew that rechecking the numbers was a possibility and transfusing her with platelets in Rockville was also a possibility, but I really just wanted them to take care of it the morning of in pre-op.  I was actually at lunch with a friend who works with lab values and nurses all the time (Georgetown) while I was on the phone with the hospitalist and she (my friend) said getting platelets a day before is useless, it's only necessary the day if you even need it at all.  Argh!  In the end, they are just going to check it the morning of the surgery.  You know, I really, really hate it when they call and they ask me - so what did the hematologist say to you about her platelets?  As if I remember her numbers exactly and want my recollection of a medical situation I don't really quite understand to guide the treatment of my daughter?  And didn't I just pay your hematology colleague $1000 to give you, the hospitalist, his opinion on her platelets?  Then, in the afternoon, I felt queasy and ill and exhausted.  I was snappy at Vince (poor kid, he was the only one around) and then proceeded to take some sick time off to take a Motrin and a long nap.

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Jeremy came home in the evening and we had pork sandwiches on pretzel bread rolls.  On the dog walk, we bumped into friends whose daughter had the spinal fusion surgery a few months ago at Children's.  They gave us some tips and also offered us some body pillows and wedges.  Their daughter is typical (meaning no special needs), and it's nice to hear from them their experience because Edda won't be able to tell us anything.  They said repositioning was key.  Use the pillows and change positions every few hours.  Sometimes their daughter wanted repositioning every few minutes until they found something comfortable.  I also was reassured today by her bus driver who had a hip replacement recently that the pain meds act very quickly, well at least the IV ones in the hospital.

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Edda and me in bed tonight, all smiles and happiness.  <3 <3 <3.

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Monday, May 22, 2017

The best Lemon Meringue Pie

Hi! This is Vincent writing this blog post because I was growing impatient of the speed at which the epic tale of my lemon meringue pie was being told to all of you. as someone who is more into cooking than baking something like this really isn't my forte. But after a long time thinking about it (about 20 seconds) I came to the epiphany that lemon meringue pie is good and I wanted to eat some. So a few hours over 3 days I set out on the quest to make a delicious lemon meringue cheese cake pie.


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first i had to make the dough. it consisted of mostly butter and flower and tasted just like it sounds, really good.

DAY 2


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Then I had to make a cheese cake filling, and i learned a fancy new Italian word, mascarpone.










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Day 3


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the best part, we finally get to see the fruits of my labor. What would be a lemon meringue pie with out a nice meringue

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My parents, being the responsible adults they are didn't want me unleashing my inner pyromaniac. thus we used a heat gun instead of a blow torch to crisp the meringue.

Haircut, camera, skin.

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On Saturday, I gave Edda a haircut so she'll look good at the hospital.  I know that sounds a little strange, but her hair was starting to creep into her eyes and I didn't want an extra thing bothering her while she was resting and recuperating.  You can kind of see her curve as she sits in her chair, her neck always askew and tilted towards the left.

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I also spent some time trying out the new camera.  I wish I knew from first use if I will love a camera, but it's hard to know until you've worked with it a while.  Will I reach for it all the time? Or will it sit collecting dust?  It's kind of the same thing as buying jeans, you never know which ones are going to be your favorite until you wear them for a while.  I think I should like this camera because I have great affection for every other camera I get and this is the every other one.

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This camera is responsive, small, good in low light.  There is a different way of taking pictures with responsive cameras that I've forgotten after years of using the iPhone.  The kind of photos you can take are so different if I can only remember how to compose them, gotta bring that muscle memory back.  Edda's skin looked better, but not perfect, on Saturday.  But today, it looks good.

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Friday, May 19, 2017

Graduation, grade change, camera.

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Originally in the fall, I had scheduled Edda's surgery for today, intending to skip the nursing school graduation.  There were many reasons to skip the ceremony - it was all the way in Baltimore, it was really early in the morning, I hardly know anyone well, and it's just one big hassle.  But Jeremy gently insisted that we change the surgery date and go to the ceremony.  He said that we needed to celebrate the finish of this project of mine that started 7 years ago.  We left the house at 6am and didn't get back until 5pm - there were two ceremonies, a nursing school one and then a UMB one which combined all the professional schools - law, medicine, social work, dentistry, etc...

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I was lucky to have Jeremy sit next to me during the whole nursing school ceremony as he was my "pinner".

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A few pals - Jeffrey who insisted on pinning himself.

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Nan - who had to explain all his cords to me.

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Last friday, when my grades were finalized for my senior practicum class, I sat down and calculated out what I had gotten in the class.  I knew I was cutting it close on the A/B line, but I didn't want to stress out about it too much, so I wasn't tracking my grades very carefully.  As I worked out the calculation, I realized that I had cut it too close this time and I ended up with an 89.46%.  Argggghhh.  Crap.  I needed just a single extra question right on an exam.  Oh well.  I didn't email the professor to bump it up, I didn't comb through anything to see if I could get an extra point somewhere, I just let it go.  I thought maybe I had a chance if they rounded in a non-traditional way, but I let that go too and I checked the final transcript days after that and saw that indeed I had gotten a B.  But then last night, while I was grocery shopping, I got an email from Crystal, my prof, to tell me there was some clerical error on the grades and that I had gotten an A instead of a B and that she'd resubmitted the paperwork to the registrar to change the grade.  cool.

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And I got a camera from Jeremy as a gift, but I'm hesitant because I'm not entirely sure I'll use it instead of my phone.

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Thursday, May 18, 2017

Graduation, nails, fan.

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I got my nails done to match my graduation dress.   Graduation is tomorrow! I got the graduation dress today at a thrift shop.  It was $30 - way more than I usually spend on a dress at a thrift shop, but the two adorable thrift shop ladies just raved about the dress and told me how much more expensive it would be at a department store.  They also persuaded me to get some strappy sandals for $10.  So then I had to get my toenails painted to match the dress.

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Jeremy got himself a huge fan.

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Wednesday, May 17, 2017

Mother's day, dance party, rash.

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.

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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!

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Saturday, May 13, 2017

Bike, Common Cause.

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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.

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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.

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Here's Cheryl Kagen, our Maryland State Senator.

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

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

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Friday, May 12, 2017

Don't forget, carpool, biking & campout.

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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.

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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.

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

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Thursday, May 11, 2017

Pantsuit, Politics and Prose, Molly.

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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.

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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.

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

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Tuesday, May 9, 2017

Surgeon. Poop.

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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.

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We got a last set of X-rays...

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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!

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Monday, May 8, 2017

Scrubs, sky, skipped ice cream.

scrub tops

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.

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