Month: October 2010

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.

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.

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.

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.

I’m so happy with how this turned out.

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

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.

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!

Video interview of Pack 928 – 20 mile bike ride.

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.