Wednesday, July 27, 2016

summer

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You know what's fun?  Being three is fun.  You get to play in the splash pad and have hamburgers and fries for lunch.  I learned both the word butt and butthole in Korean from Bert.

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Vickey introduced me to cajun flavored fries with malt vinegar (at my most favorite burger place - Five Guys).  She says it's like fish and chips.  I said I liked it, but when pressed by Vickey, I admitted that I wouldn't order them again - I'd have the plain ones and I'd stick with ketchup.

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Vickey also introduced me to this new thing - a way to make 100 water balloons in 1 minute.  Each of these balloons have little straws all attached simultaneously to a garden hose connector and when they are full, they pop off the straw and seal with a tiny rubber band.

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We got to assemble a Playmobile ambulance which was harder than I remembered when I assembled little toys a decade ago for Vince.  I think it was harder because my eyesight is terrible-er and I didn't have my glasses within arms length.  Lots of squinting to apply the small stickers in a straight line.

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Came complete with an injured "Jeremy".  Poor guy, luckily it was only a flesh wound and just needed IV fluid, which the ambulance had.  I miss my boys - they don't often leave for a week together.  I have a slight, irrational fear that they won't come back and then I'd miss them and then I'd have to do the rest of my life without them.  That would be hard.

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Tuesday, July 26, 2016

taco tuesday.

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Kitachi helps out with Edda on Tues & Thurs nights and Sat. days, she's been working with Edda since last August - almost a year now.  They went to see Secret Life of Pets on last Saturday with a tub of popcorn and soda.   Tonight was taco tuesday - to which Kitachi said, I love tacos, they are my favorite!  I did not know this, or I would have made tacos on tuesdays earlier.  I was all excited because I had gone out of my way to purchase taco shells that had a flat bottom so you could stand them up and fill them, but alas, many of them had broken in transit.  So we had slightly crumbled tacos on this tuesday.

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Monday, July 25, 2016

Monday.

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Quiet day here with just the girls.  Edda's wound looks good today.  I found some medical sticky tape with some padding to hopefully prevent abrasion against the armpit.

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Home for dinner.

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Nat helped with dinner and Edda tonight.

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Vince texted me this rainbow from their drive last night:

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Into the wilderness this morning:

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Sunday, July 24, 2016

on their way.

Headed to the Gila Wilderness:

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Ready for takeoff.

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Made it to NM - and Sparky's - the home of the world famous green chile cheeseburgers.

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Saturday, July 23, 2016

getting ready.

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There are 10,000 beautiful types of usually-illegal-in-the-house snack foods on our dining room table.  Jeremy is carefully packing them in uncrushable plastic protector packages and I'm eating what doesn't fit.  Wheat thins. Granola bars. M&Ms. Crackers.  Cheez-Its: Jeremy bought the original flavor; I vastly prefer the White Cheddar flavor.  But since the Original is the only flavor in the house, I'm happily tilting the plastic baggie with the crumbs towards my wide open mouth like a 7-year-old.

The boys are going backpacking in the great southwest - 4 days/nights outside in the wilderness.   I reminded Vince to pack some chapstick.

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We prepped for me too - some easy dinners:

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Jeremy made a week's worth of Edda's camp lunch: meat-free & nut-free.

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Look at this amazing braid I did this morning!  The trick is to do it right after her shower where I washed her hair with both shampoo and conditioner.

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home and weirdness.

Jeremy's struggling a little with the prednisone taper.  He feels both well and not well at the same time.  Today is his last dose, hopefully, he'll feel good next week.  You think your personality is you, but while he was on the oral steroids, he spoke faster and was more decisive.  He had to apologize to someone at work because he couldn't let them get a word in edgewise.  He also needed much less sleep, he just wasn't tired.  I hope he got some work done in the middle of the night. His face is better, but still lopsided.

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I still need my regular amount of sleep.  I'm like Goldilocks, too much makes me groggy, too little makes me short tempered.

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Summer is half over.  I mark summer by Edda's time in camp. It's a seven week camp and she's done four now.  Now it's the last three week session.  I think Edda's having a good time.  I want Edda to have a good time, but it's hard to tell which makes it a little hard for me.

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Vince is back from overnight computer camp.  Jeremy went to the Friday afternoon pickup/ceremony.  Six of the kids in this photo are Vince's friends from school.  He said the best part of camp was the hanging out in a college dorm in the evenings, listening/dancing to music and just doing whatever they wanted.  Eating pizza and hamburgers everyday.

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He had a course in 3D printing.

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His little masterpieces.  Those chapped lips!  Forgot to pack chapstick.  Who needs chapstick in the summer?  Apparently Vince does.

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Thursday, July 21, 2016

wound.

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Edda has a little wound where her armpit meets her back brace.   It was there a few weeks ago, but I thought it had healed.  Maybe it healed and then opened again?  Or maybe it's been unhealed for a few weeks.  So we went without the back brace last night, today and tonight too.

This morning, I did her braids while re-watching American Beauty.  I loved the movie when it came out, but its revelations are not as shocking now.

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The thing I love about giving up the brace is that the snuggling is back.  It makes me so sad that with the back brace, it's impossible to snuggle Edda to sleep.   Hugging her is like hugging a Terrapin turtle.  But now, while her wound is healing, I get to curl up right next to her and feel her whole daytime stiff body relax as she falls to sleep.

Good night!  See you on the other side.

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Wednesday, July 20, 2016

17,000 bicycles.

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I think most of my friends think I'm pretty flexible in terms of what to do, where to eat, what to see, where to go and I am - I never really care what the plan is, I can accommodate whatever crazy scheduling logistics when we are still deciding.  It's only after the plan is set am I upset that we have to deviate from it.  Like today - I had a plan for today which just involved these things: wake up, go for a run, log into work, drop Edda off at camp, come home, work until 6:30 pm - no meetings, no phone calls, make/have dinner, do the night time routine and then go to bed.  This is a very straightforward and simple schedule for me, not pressed for time, everything easy.  But then somehow I get irritated when Jeremy calls at 4:30 pm asking me to drive across town through rush hour Beltway traffic at 5 pm to help him pick up and drop off bikes at the cool hipster bike store we've decided to patronize.  Because they are cool and hip, they are a little unpredictable with scheduling and timing and hence Jeremy's last minute request.  It's not that I couldn't do it or that it caused me a big load of hassle, I think it mainly messed with my idea of what the plan was going to be for the day.  I need like a 24 hour lead time to change the plan and I think this was established in my teens when we'd leave messages on phones and expect a replies in a day or so.  I would never survive as a teenager now with last minute texting for meet-ups, it would drive me bonkers.

Jeremy promised a night out on the town for my self-inflicted troubles, we made it to the Parkway Deli, a favorite of the DC Martins, but we'd never been there before.

Edda loves her matzo ball soup.

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They have a free pickle bar with beets.   I'm wearing one of Vince's old shirts that is too small for him.  It's the Death Star with "epic fail" written on it.  Maybe not the best wardrobe choice, a little too geeky even for me.

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My crazy sandwich.   I do eat vegetables - mainly at home, not when I'm out.

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Dessert case.

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Monday, July 18, 2016

Monday.

Edda got caught in a rainstorm today.

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Nat used our little shower wheelchair to clean Edda up.  woo hoo!

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Sunday, July 17, 2016

Sunday.

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I've found out that I usually stand on the right side of Jeremy and that's his palsied side.  Jeremy's palsied side doesn't look too different from his general neutral face (there isn't real drooping, nor is their drooling) so I can momentarily forget that it's his frozen face side.  The blinking reflex is also bad on that side, so it makes that side of his face more steadfast and stern than his general neutral face.  So when I talk to him, I glance over at him to pick up facial cues (which you never realize that you are doing, but you do it all the time), and all I get is the feeling that he's mad or pissed at me - which isn't true, and I can tell it's not true because if I stand on his left side, I get a completely different feeling from the same conversation.

Jeremy and Vince are going to backpacking in a week - so we went to Target to pick up food supplies.

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Backpacking = lots of snack food.

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I loved the newest Star Wars movie, the main character is a girl named Rey, but her action figure is nowhere to be seen.  There is a scene when Maz Kanata tells Rey - "The force - it's calling to you - just let it in."  and Rey is going to save the universe.  Sometimes, when I'm having a bad day, I imaging Maz telling me the same thing.  Just let the force help you out, Doris.  You too can overcome the dark side....  All the guys are here, but not the main girl.

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Edda laughing - it happens less frequently now, but it happened today...can you hear JT in the background?



Then we went to REI.  We lost a sleeping bag and needed to replace it.  Vince and i goofing around on the sample ground sleeping pad.

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Then we dropped Vince off for a week at computer camp @ American University.  This is the last year he's going to do this - I think now he's a bit old for this, but he was still very excited.

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Rooming with a best buddy....

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We went to another burger place for dinner - Burger Tap and Shake.  Five Guys is still better...

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Saturday, July 16, 2016

elevation burger.

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Jeremy went out on a 75 (!) mile bike ride today on his new bike.  Edda and I went out to Elevation Burger because I had these old punch cards for free burgers.  I had earned two free burgers because we were frequent customers in the past, but I wasn't sure they were still running the promotion.   Turns out they had stopped the promotion, but they did give me one free burger and we had a good time.

Elevation burger was one of the first of many burger joints to appear in our neighborhood.  I still love Five Guys the best, then I love Shake Shack.  Elevation Burger makes a great burger, but the fries are lacking.  But even with the subpar fries, Edda and I finished off our order....

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Happy girl.  Burger & fries in the tummy.

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Friday, July 15, 2016

Edda & Pokemon Go.

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This is Elana, Edda's camp counselor.  Headed to her freshman year at Columbia in the fall to study international relations, but spending the summer helping Edda have fun.  Hooray for Elana!  Edda is having the most fun in the pool, which is great to hear.  But Edda can complain too (a lot), but Elana seems to manage it with good cheer.

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Our local durable medical equipment (DME) supplier (not so local actually - it's located in Alexandria, VA) is so, so, so, so, very, very, very lame at ordering equipment.  But every DRs office, supplier, vendor I call refers us to this DME.  Even Montgomery County Public Schools has a contract with them to supply wheelchairs, adaptive toilets, adaptive seating etc.  But they don't answer emails, they don't show up when they say they will, they forget what we ordered, they forget our names and our phone numbers.  Anyways, we put in an order for a bath wheelchair May 11th and have heard nothing since.  I'm not sure if they submitted it to insurance.  I'm not sure if insurance is working on approving it, I don't know where it is.  Maybe insurance will not approve it, I have no idea the status of anything.

In the meantime, I've been giving Edda showers on a simple plastic chair and I've been asking our two main caregivers to give Edda showers. Edda now is almost 100 lb and if you think I'm little, you should stand me next to Nat or Kitachi and you will see just how much of a giant I am.  Earlier this week, Edda slipped on the soapy seat in the shower and I couldn't catch her fast enough.  She was fine, she fell slowly onto her knees, but I yelled downstairs to Jeremy in tears that we needed to forget about insurance paying for the chair and order it ourselves.

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And it came - expedited shipping and beautiful!  Just kidding.  It's not beautiful, but it is excellent for the thing it is suppose to do - which is keep everyone safe and not slipping around like greased pigs.  Using this chair, I can get her undressed in a dry place, wheel her into the shower, soap and rinse her, dry her, and wheel her out of the shower and back into her room.  There is no lifting in the wet/soapy shower.  Fantastic.

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To celebrate Friday, we went to Ben and Jerry's for ice cream, where I decided that I want my nickname to be Dot.

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And I played Pokemon Go on the drive home, where my player name is DorisMartin (bottom left of photo).

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