Year: 2011

kowtowing at the altar of the iPad 2.

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…

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.

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.

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

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.

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.

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.

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.