Sunday, October 31, 2010

Rally to restore sanity.


We did go to the rally to restore sanity yesterday. We left Edda behind at home and I felt a little bad about it because she comes along to 99% of our crazy outings and I thought she could manage this one, but in the end it turned out to be a good idea because the Metro was so packed, the three of us just managed to barely squeeze onto a train (there would have been no room for Edda's wheelchair) and by the time we got downtown we were all drenched in our own sweat from the heat generated from 10,000 people in one subway car.



We left the house at 11 am - the rally was suppose to start at 1 pm. We could not get into the rally site because it was already jam packed full of people and they were closing the entrances to prevent more people from trying to squish in.


We did not see the stage, but we heard the national anthem (held our hands over our hearts and cheered) and we heard the voice of Jon Stewart and Steven Colbert, but we were left meandering the outskirts of the rally.


Saturday, October 30, 2010

Halloween parades.

I went to the kids' Halloween parties/parades yesterday. Vince was Luke Skywalker


Edda showed off her Big Bird-ness at the parade.


Her classroom party was nice - I met a lot of other parents and the kids were nice - although Edda was asleep the whole time I was in the classroom.


I ate her Halloween donut for her.


Even though everyone was very welcoming and nice in Edda's class and everyone knew her and wanted to help her play Bingo and make her crafts and admired her costume, these parties sometimes wear on my soul. I left a little early and drove around town to find some french fries to eat to make me feel a little happier. I came home about an hour later to 2 happy kids and water flooding the basement. Yes. Water was flooding the basement from an improperly installed pipe. We ran around like headless chickens looking for the water main which we found, but not without freaking out and making some areas of the basement very, very wet.

Friday, October 29, 2010


Often people ask me about Edda's neuro, gastro, ortho, etc. and I like to say that we have none! (Which is not entirely true... because we do have some that we've seen, just none that we like and want to go back to).


So now that we've decided that Edda has seizures, we finally got Edda into see our local (new to us, but not new to other Rett Syndrome families) neuro and after some discussion (without Edda's input as she was asleep) we got a script for Keppra. We started her first dose last night and for the first time since August, she slept through the night which is AWESOME, but she's been tipsy, tipsy on her feet all day. We'll see how it goes.

I love our new neurologist. He's a keeper. He's also in the same building as our primary care doctors, so I multitasked and got the adults all their flu shots right before the neuro appointment. Gotta take advantage.


Thursday, October 28, 2010

Dynavox Eyemax.

This week we trialed the Dynavox Eyemax at Edda's school. This is the 2nd machine we've tried after the MyTobii a few weeks ago. The company that makes the Dynavox machine has long been the leader in augmentative communication devices and I was really hoping that Edda would be able to use the eye gaze effectively. You can see the cameras on the bottom of the device in the following photo - they are located in the little black bar...


Edda had a really hard time calibrating her eye gaze with the camera. We tried a few times - different distances and different positions. It was not easy. Edda soon tired of the whole thing and:


Edda's teacher and I both used her nap time to try and calibrate our own eyes and we found that it was even difficult for us to get calibrated. The eye gaze capability of this machine does not seem as robust as the MiTobii which seemed to have no problem with calibration. So comparing the two systems so far, the MyTobii is out ahead.

I'm not sure how likely the school system is going to pay for these systems - at $17K each, it's a large expense for any cash-strapped school system. We need to show that Edda has functional use of the machine, that she can answer questions or categorize things and at both of these eye-gaze trials, she failed to show either ability although I acknowledge it is like trying to play the piano without lessons and practicing.

Wednesday, October 27, 2010


I'm so happy with how this turned out.



I think Edda is happy too. Now to keep the feathers out of her mouth!


$600,000.00 Dog (World's Most Expensive Dog)

This Tibetan Mastiff is the world's most-expensive dog. It has a price tag of $600,000.00.
When this dog was greeted by this un-identified lady in X'ian Airport, China, the dog was also greeted by a motorcade of 30 black Mercedes-Benz.

Tuesday, October 26, 2010

The awesomest Halloween costume ever!

I'm such a softie for the a good old-fashioned homemade costume for Halloween. Vincent just wanted a store-bought Star Wars costume that I know at least half the boys in the class are going to show up in. What's the fun in that? Poor Edda, the little girl who is going to suffer at the creative hand of her mother - I'm working on a costume doozy. She's going to have the awesome-est costume at her school. Shhhh... it's not ready yet.


Monday, October 25, 2010

The Monster Mash.

My friend, Jennifer, is moonlighting as a back-up singer for a local kid-rock band. Edda and I went to see them on Sunday at the Austin Grill which, having lived in Austin during our era of no-kids and two professional incomes (which = eating out a lot), does not compare to Chuy's food-wise, but I give them a thumb's up for supporting local bands and causes.


They are dubbed - Here Comes Trouble!


Sunday, October 24, 2010

My butt hurts.

Video interview of Pack 928 - 20 mile bike ride.

Getting a puppy.


While Vince and Jeremy were out doing their 20 mile ride, Edda and I (and my parents) headed out to meet doggies from Lab Rescue. We are looking to add a puppy to our household and we are starting to work through the Lab Rescue organization to get matched up with one. Edda and I went to enjoy the beautiful day and to meet some of the doggies they have up for adoption. No, we didn't add anyone to the family just yet.


Saturday, October 23, 2010

20 mile bike ride.


For a family that bikes as much as we do, we have very low-tech bikes. All of our bikes are salvaged from Goodwill or passed down through siblings or procured from neighborhood yard sales. Our bikes probably leave the garage on outings more often than our cars leave the garage. We don't do long haul biking - most of our trips are less than 4 miles - to the Metro, to church, to school, to the library, to the grocery store and to the pizza/ice cream joint. But not today! The boys took their bikes and rode 20 miles on the C & O canal. Jeremy and Vince are planning (with the scouts) to ride the whole length of the canal over the next 3 years (184 miles!). I actually contemplated going with them and taking Edda her trailer, but 20 miles is a long way to be bouncing in a trailer; they were gone from the house from 9 am - 6 pm which really was going to be too much for Edda.




Another beautiful October weekend! I love autumn!


Wednesday, October 20, 2010

Butler's field trip.

Butlers Orchard 008

Edda went to Butler's Orchard today with her school. Neither Jeremy nor I were able to chaperone today - but we got some lovely photos from the teacher.

Butlers Orchard 054

Monday, October 18, 2010


I am always amazed at how quickly kids can learn stuff. It only seemed like yesterday Vince was learning to count - today, he's learning about graphing data. I wish I could learn at the rate he is learning; I'm just trying not to lose the stuff I already know.

A sample of Vince's homework. Don't the answers seem not to be the right ones for the question? Also, what the hell is a stem and leaf plot? Vince had to teach me that one.


Sunday, October 17, 2010

Out of town.

Jeremy's been out of town most of the past week and as usual, our diet suffered considerably while he was gone. No one starved, but I'm often reduced to having Honey Nut Cheerios for at least two of my meals each day and the kids are down to mac/cheese, ravioli, oatmeal and glasses of milk. Oh, throw a banana or two in there and maybe a bag of microwave popcorn and that's what we've been eating for 3-4 days. I also have this terrible habit of leaving Edda in her stretchy pants (which were used as PJ) and leaving them on all day. I actually went to the park with the kids with Edda still in them. Not the best look ever.


I know I should make Edda the most fashionable one us all - but somehow on Saturday, I ran out of inspiration. I think I may have been in some stretchy pants myself. Oh well.


Vince's hair is so long now, it's hard to get a photo where you can see his eyes.


Saturday, October 16, 2010

Happiness is...


... having a friend to do armpit farts with.


Friday, October 15, 2010

Open house.

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.

Thursday, October 14, 2010

I love yard sales.

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. :P


Wednesday, October 13, 2010

Lots of boobs.

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.


Tuesday, October 12, 2010

Vast amouts of time.

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.


Sunday, October 10, 2010


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.




Silent Auction:


The limbo:


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


Thursday, October 7, 2010

Date night.

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.