Thursday, April 28, 2011

Bring your kids to work day.

Vince convinced Jeremy to take him to work today in honor of Take Your Kids to Work Day. I was not optimistic about this endeavor, I mean how much fun can watching your dad work in front of a computer screen all day be? It's like a get-out-of-school-free-card! But Vince insisted and Jeremy capitulated. Jeremy managed to turn it into a learning experience - Vince interviewed 7 people who work with Jeremy and I'll post some of the videos this week.

This is Sarah:

Wednesday, April 27, 2011

OK, backing up on the vacation...

On Easter Sunday, we found ourselves in Pittsburgh, where we ate a delicious breakfast at Pamela's Diner where we all helped ourselves out to their delicious crepe style pancakes!

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Then we headed over to the National Aviary where Edda mingled with the penguins:

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And Vince hand fed birds:

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The boys and Denise went to take in a Pirates/Nats game where Vince ended up on the Jumbo-tron a record 3 times! Edda and I hung out and enjoyed this enormous cheesecake!

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Tuesday, April 26, 2011

Lucky Easter!

We had a really nice Easter vacation - I'll start with the last thing and then work backwards. Here's a nice family photo of us at the White House! Vince is trying to make Edda look at the camera.

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We were lucky enough (!) to get tickets to the annual Easter Egg Roll at the White House this year. Vince and Edda were actually not very interested in the actual rolling of eggs, so we focused on other activities on the White House lawn! I wore a borrowed bright yellow dress which made me feel fabulous :)

We met various cartoon celebrities... many photos, I will present only one for your enjoyment...

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It was hot and Edda was asleep for a lot of the event, but she woke up long enough to shake hands with Michelle Obama. Lucky girl ;) I know Ms. Obama looks a little concerned in this photo, but I only got off one shot with my camera and this was it - so there you go!

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Thursday, April 21, 2011

Monday, April 18, 2011

Edda's Chincoteague experience.

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I was pleasantly surprised at how much Edda enjoyed her time on Chicoteague! It was blustery and threatened to rain, but Edda loved the wind and walking on the beach. There were a bunch of accessible hikes through the marshes. We had a dandy time. And she got a ton of exercise. I'll take day of walking on the sand over any formal PT session. Apparently, she's an off-season beach kind of girl...

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Sunday, April 17, 2011

Chincoteague.

We took the kiddos to the Cub Scouts' annual spring break trip to Chincoteague Island. Many years ago, the pack decided that camping so early in the season was too cold, so now the pack stays at the Refuge Inn, which was great.

A huge storm threatened the whole day on Saturday, but the rain didn't start falling until after dinnertime.

There was swimming in the indoor pool, kite flying, ranger hiking, bike riding and McDonald's eating.

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Wednesday, April 13, 2011

Taking the day off.

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I took the day off yesterday. And I did anything I damn well wanted. I had tea with a friend, I started setting up a tomato garden, I decided to go back to school and take some classes, I ate dinner with my husband, I went to my small group meeting and finally I planned some parties. And I got a full nights sleep. I'm ready to get back to work today.

Oh and I took some pictures of weeds.

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My 8 dollar dinner (we split it!) with my husband.

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Saturday, April 9, 2011

Jeremy's been traveling more than usual this month and it's been a little hectic around here for me. It feels like I haven't left the house in a month (although I know this isn't true) and every minute feels scheduled with work or childcare or cooking or cleaning or errands.

My parents left for China this past week - we are missing them already. This was the last Sunday night dinner my parents had with the Martins. I like this photo (even though my mom is blurry) because of all the wacky facial expressions everyone has on their faces.

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And since Jeremy's been gone away, I've had to handle some things on my own that I would rather not have, mainly Edda's IEP meeting.

We had Edda's IEP meeting this week and I really enjoy Edda's school and the staff there love her and care for her and teach her. It's just very, very difficult to sit and listen to all the things that Edda cannot do for 90 minutes. And there are so many things that Edda cannot do. And it is all so sad to listen to it all at once from people who care about her and spend every day with her and not feel like all is lost and will forever be this way.

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This school year was especially difficult because with the onset of Edda's more substantial seizures and the various medication changes - I would say Edda lost 2-3 months of school just trying to stay awake through the day. My daily hopes for Edda's school day changed from seeing progress in various skills to just to see if she could stay awake for longer than 1/2 the day and also to if she seemed to enjoy being at school. It's only been in the last month or so that we've seen Edda's enjoyment return.

I would say that Edda's hand use is poorer than it was last year - I think because they focused so much on eye gaze this year, that the hand use suffered. We did have a few good eye-gaze trials at school and I feel like this is our big triumph this year with the school system, but I have been dragging my feet on procuring one of these devices mainly because I think it will end up not being used very much and just sitting in the corner of the dining room table taunting me like a piece of unused exercise equipment. Anyways, I feel like at home this year, because Edda is now almost half my weight, we are just struggling to do a lot of the physical care which this year means buying a lot of equipment to help with lifting - bathing, toileting, getting up and down stairs, getting into the community and out of the house that that these tasks are already overwhelming enough for me. I have added a regiment of back exercises to keep myself strong in hopes of not throwing out my back when I'm maneuvering Edda.

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Friday, April 8, 2011

Back from Ames.

Jeremy just got back from a business trip to Ames, Iowa. Not as exciting as Rio, but work can't always be a day at the beach ;).

I wanted to post his talk about biofuels that he's been working on for a while that he presented to a general audience at the university in Ames. It's geared towards anyone who might have an interest in biofuels and does not skew too much into policy or analysis (which I can tell you - once Jeremy gets going on policy or analysis past 9:30 pm - is a great way for me to fall asleep at night and for him to be up for hours fretting about some work thing-y). Anyways, when Jeremy practiced this talk for me last week, I swear, I thought it was the best talk I've ever heard him give and I've been listening to all of his talks since late 1995 (the very first one was about statistical mechanics - really, there is no way to make a talk about statistical mechanics not soporific even if you've been only dating 6 months and really, really want to be a good audience).

Anyways, here it is, it's kind of long. Doesn't get started until the 13 minute mark or so.

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Wednesday, April 6, 2011

Anything more beautiful -

than a beautiful spring day? Nothing is easier to do than to take beautiful pictures of flowers. There are flowers everywhere and it makes spring so wonderful. I had a terrible bout of spring fever today. I did not want to do anything on my to-do list. I just wanted to go outside and be part of the world.

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And have some onion rings.

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Tuesday, April 5, 2011

Having 2nd thoughts.

I think Edda's been sleeping too much at school. I suspect it's because of her seizure medication, although I can not be sure. She's been sick more often this winter than previous winters - although I'm not sure what to blame that on. I'm a little bewildered about what to do with Edda these days. She simultaneously needs so much in terms of daily care and also demands so little from me in terms of almost everything else.

Vince enjoys pushing Edda all over Target that I often can't find either of them. I'm a little worried because Vince isn't a very good driver -

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It's curious that most of the photos of Edda outside of the house are at Target. Maybe we should expand our repertoire.

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We've also gone backward in our technology direction - we subscribed to the PAPER! With actual newsprint smudging on your fingertips. Crazy.

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Sunday, April 3, 2011

Eating, fixing, resting.

Vince is still sick, still recovering from his epic slumber party - I think it might be a while until we host one again.

I made his favorite curry on Friday night - which includes carrots.

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We also spent some time fixing Edda's brand new bath chair...

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Heat gun action -

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Friday, April 1, 2011

Donald's (INTERNET) Birthday Party































Happy Birthday, Donald - from Mom, Dad, Jeremy, Doris, Vince, Edda & Denise.

Today, we decide to have an INTERNET Birthday Party for Donald. Mom prepares a lot of delicious food and harvests some flowers from our garden, I buy a cheese cake from Cheese Cake Factory which is one of Donald's favorites. A birthday balloon, of course. Also, according to Chinese tradition, we seal a red envelop for Donald. Since Vince is sitting in for Donald, he and Edda get to share what is in it as well as those food, cake. Also, he proudly blows off the birthday candles for the second time in less than one month :)

Picture one - Mom, flowers, balloon and her new diamond necklace from her long time boy friend
Picture two - Two of the best are in front. the worst one is blocked in the back :)
Picture three - Jeremy shares the cake with Donald thru INTERNET
Picture four - Vince is blowing the birthday candles for Donald

We have a fun time together, physically or remotely. Again, Donald, Happy Birthday!

Bath chair -

This is an expensive year special needs equipment-wise. In January, we bought the minivan with the accessible seat. We are now getting quotes to install the stair lift in the house. We are also ordering a new chair so that Edda can eat comfortably at the table as well as a new toilet seat. Just the other day, we got a bath chair so that I won't have the fear of death (and the fear of throwing out my back) every time I lift Edda in and out of the bath.

See our beautiful bath chair -

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Less than 48 hours after it was delivered, Maxi (the evil dog) chewed the power cord. That dog is a piece of work.

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Happy Birthday, Donald

Happy Birthday, Donald! Mom & Dad

Kouign-amann, pancake practice, bacon.

Ohhhh, I love these Kouign-amann.  It's like a croissant covered in a crunchy sugar coating. I'm eating poorly these days, snackin...