Author: Doris

Monday was Columbus Day, which is one of those federal holidays which kind of sneaks up on you. Both Jeremy and I had the day off, the kids had to go to school. Hooray for us! We spent the day running errands, of course. And the schools scheduled open houses for all the parents.

Today, the kids were out of school and we were both at work. I have no idea why the kids were out of school. Vince is on his last hour of being grounded. We are all going to be happy to play with pals again soon. Grounding is hard on Vince, but also hard on us with wails of “I’m so bored” and then the extra rummaging through my office supplies – lots of use of staples and tape for impromptu art projects.

I like buying stuff like this at yard sales.

Jeremy refused to participate in growing the magic rocks. He said that since I was an actual bench chemist (in a past life), this was my territory. 😛

I went to the Renaissance fair on Saturday. I have never been to one of these things before, it was fun and it would have been more fun if I didn’t spend 2 extra hours than I was planning to in the car (1 hour to park, 1 hour to leave the parking lot). These were my cohorts:

There were a lot of boobs on display. There was a lot of yummy carnival food:

And a demonstration of jousting, the official Maryland sport.

Vince is grounded this week. While the reason for his grounding is not blogging material, I can tell you what he won’t be doing this week. He won’t have any screen time (no youtube, no angry birds (which is great fun by the way), no netflix downloads, no wii). (God, do we really have that many ways to entertain ourselves?!? Crazy.) He won’t have any playdates – I’ve already had to cancel a cub scout outing, a sleepover and movie night at the school. He has an extra chore every day this week, today was sorting toys to give away to charity. We do not ground him very often, so we don’t have a set rules for what his punishment should be, but this seemed to fit his offense.

Actually, as we noticed today – without all the extra screen time, Vince has been drawing pictures, reading to Edda and being extra nice and helpful; maybe we should limit his computer time more frequently. He did complain that Edda got to watch TV and I said that Edda wasn’t grounded and he groused that Edda would probably never be grounded in her life. And I had to acknowledge that Edda would indeed probably never be grounded in her life, but that Vince probably had the better deal in general, with him, you know, being an able-bodied person.

Anyways, that’s what’s going on over here. Jeremy’s been filming himself for the past few weeks. Part of his job involves “media” and “outreach” which is not what he has a lot of training in. Ask him about statistical mechanics or excel spreadsheets and he’s all over it, ask him about how to be a talking head, and it’s a little bit harder. I’m hoping to link to a video soon, someday.

The 5th Annual Fairfax stroll-a-thon. This one was thrown together very quickly, we were all a little overwhelmed this year – but out of the 4 strolls that I’ve been to, this one was the most fun and the most relaxing. Our team in our trademark tie-died t-shirts.

Cupcakes:

Silent Auction:

The limbo:

Vince just loves the DJ they hire, he danced for 2 hours straight. Look at that hair!

Last night, Jeremy and I went to IKEA for date night. We needed to return some cabinets which were the wrong size and we thought that going to IKEA would be relaxing and fun! However, we spent a long time waiting, first in the return line, then at the kitchen remodel section, and then finally waiting for the items to be pulled. All the colorful colors were not enough to make us feel like we were out on the town and reveling in each other’s company. We were out on date night doing errands. We were out way past our bed-time (9:15 pm) and the $1 frozen yogurt did not seem to make up for the weariness that we both felt. At least we managed to get all of our goodies into our sedan, unlike the two girls across the parking lot from us who looked like they were trying to fit a sofa and and bookshelf into a beat up Nissan Maxima.

Today, the insurance folks came to look at the hole in the roof. It’s still pretty hard to see from the outside, you can just make it out if you know what you are looking for and use a pair of binoculars. Of course, the repair is going to come in just under our deductible, which is not super high but high enough to think ouch (we didn’t really budget a tree-falling-into-the-house fund), so I think we are just going to fix it ourselves. Well, not ourselves ourselves, ourselves meaning hiring a roofer and paying them ourselves.

We’ve finally figured out how to extend Edda’s wheelchair feet – so now she actually fits and her knees are not all akimbo. It only took 2 people both with advanced engineering degrees a year to figure it out.

As part of Rett Syndrome Awareness month, the MD/DC/VA families are hosting a stroll-a-thon in Fairfax next weekend. Consider donating to Team Edda to fund research for treatments for Rett Syndrome. Click on the link to donate 🙂 Thank you!

http://www.firstgiving.com/team_edda

Last week, we finally have gotten out of our little denial phase and have Google-diagnosed Edda as having seizures. I think she had 3 drop seizures last week (once on Tuesday at school and 2 on Saturday) where she actually fell to the ground (she did not get hurt). Now, she often wakes up in the middle of the night, unhappy, shaking and jerking. This has been building up since mid-summer, it’s the drop seizures that really convinced us that we can no longer really ignore this new development. We set up an appointment for a neurologist in a week or so to see what we should do. This is a setback, of course. We spent the weekend moping around the house and thinking that this was the start of rapidly deteriorating health for Edda and that her seizures were going to spiral out of control which probably is not true, but dammit, I like to indulge the pessimistic part of my personality. I also convinced myself that Edda was generally less responsive to me, my voice and her surroundings, so I did not hold out much hope for her first eye-gaze computer trial which was on Monday.

Eye-gaze computers have cameras and sensors installed along the computer screen to read Edda’s eye movements, so that her choices can be made by eye gaze. I have been working (slowly, but with great cheer and cooperation) with the school system to have Edda evaluated on these systems (there are a number of them out there). I don’t think the county’s ACC team have much experience with these sorts of devices, which is a little surprising to me. But anyways – on Monday, there were a whole party at Edda’s trial, both Edda’s 1st grade and kindergarten teachers, the OT, and 3 people from the central office. There were 4 video cameras trained on Edda. As I said, I was not optimistic, but Edda, as they say, exceeded expectations. She did not whine, did not fall asleep, did not act disinterested. She worked on the computer for well over an hour. She picked out pictures of Dora consistently from a field of 5, she consistently scanned over all her choices looking all over the screen, she did some simple, simple games. I don’t want to over sell Edda’s capabilities, it did seem haphazard a lot of the time and she favored the left side of the screen over the right side (same as her hands), but it was a nice start. She seemed pretty pleased with herself. So to balance out the crappiness of the onset of seizures, we have the really wonderful eye-gaze session in front of all the people who hopefully will fund the device and help Edda learn to use it.

Newborn Edda:

October is Rett Syndrome Awareness Month! So much news to share:

We won 250K last night from Pepsi – all funds go to research!

Two new gene therapy projects are announced!

And last but not least, a bunch of Cure Rett Syndrome supporters braved the pouring rain and kicked off the Awareness month by appearing in the crowd of the Today show. One of the moms got picked for a makeover…

I managed (in an odd way) to cause a neighbor (who I’m friends with) who was dressed up for work to tumble into a huge puddle (it has been pouring rain all day) and get completely soaked in front of the morning elementary school drop off crowd.

The dryer broke on Monday. It spun, but did not heat. We managed to install a spare (yes, don’t ask why we have a spare dryer, but we do). Jeremy and I moved the spare dryer up 2 flights of stairs late Monday night. Today the washer broke. I told everyone not to get their clothes dirty.

I had a handyman come in for the past two days to install cabinets in the basement. Turns out, we did not get the right size cabinets. A days work must be undone and redone.

The largest picture window in the house is leaking. We thought it was because the window was installed incorrectly (a lot of things in the house are not installed that well). Turns out that there is a hole in the roof. Yes, a hole that is just pouring water into our walls. A tree hit our roof and made a hole in the roof and even broke some 2x4s from the mega storm this summer. We just never noticed the hole in the roof because you can’t see the damage from the ground.

I asked the handyman who was installing the cabinets to find a tarp to put on the roof (because it’s pouring rain) to cover the hole. While driving to Home Depot, he drove over a nail which caused him to have a flat tire.

The power went out for 2 hours this afternoon.

I went to Edda’s school where as soon as I said hello to her, she fell asleep.

Ahhhh, life. This is just how it goes.

Edda has been slowly outgrowing her wheelchair. Knobby knees point out in all directions. A nice lady stopped us while we were shopping at Target and asked if we’d like her daughter’s old wheelchair. We said sure! And she dropped it off at our house. Purple-y goodness.