It is the end of the week! Hooray! I’m feeling much better because it’s my favorite time of the week, Friday night.
Jeremy is making a 1 day business trip to Chicago today – it might be the first time where he’s gone on a business trip without any extra underwear in his carry-on. He was suppose to get up at 5 am to make his 7:15 am departure time, but the alarm didn’t go off. I woke up on my own at 5:30am and then mumbled to him that he was late already and then I heard mad dashing around the house and I suppose he was out the door at 5:38 am. He did make the flight and I think is getting on his homeward bound flight right now for an ETA into our house at midnight.
We did manage to give Edda a haircut on Wednesday night.
I know you can’t look a borrowed camera in it’s mouth, but the f 3.5 aperature is just killing me. My indoor shots are all way blurry. I guess I just need to set the ISO higher.
In other interesting news, we are slowly getting the school system to work with Edda on using eye-gaze computer technology which is a pleasant surprise. I have not really pursued this kind of equipment for Edda on our own for a number of reasons, mainly because of cost and also because I know, like my beautiful piano or stationary rower which were kind of pricey things (but not as pricey as the eye gaze computer), I start off strong and excited about such things and then as it becomes clear that it’s not instantly amazing and rewarding and is a lot of work, it ends up gathering dust in a corner and making me feel guilty. This is a pretty lame assessment of the situation, but it is what it is.
So the school is going to do a lot of the work for me and they are excited about it. Although they did warn me that it’s not easy and they have tried it on a number of other Rett girls in the county already and it was hard to get calibration and/or a long enough dwell time to make the eye gaze a produce a EUREKA! moment. I was not surprised about the difficulty in using the system, my surprise was hearing about the other Rett girls who were trialing eye-gaze systems. I know a few other Rett Syndrome families in the county, but the county’s augmentative communication specialist seemed to imply that there were more families than those I am aware of and apparently they are more proactive than I am in pursuing communication goals. I feel a little like I’m a day late and a dollar short.
This is also kind of a lame reason for not pursuing these special communications systems, it’s more of an engineering reason rather than any sort of educational reason. When Edda was diagnosed 4 years ago, the eye gaze technology was really not readily available and the Rett Syndrome community was excited about the Tango. The Tango is a touch screen driven communcation system which is rather cute. I was talking on the phone with the Tango sales rep a few years ago and complaining to him – why does it have to cost $8,000? Couldn’t they just put their software on an iPhone and make it available for something like $500-$800? He answered back that the Tango did so much MORE than the iPhone and I replied that the Tango DID NOT MAKE PHONE CALLS. It now occurs to me that the could put it on the iPad and hopefullly it would still be quite a bit less than $8,000. Anyways, I know it’s a supply/demand situation, there are never going to be as many people who want augmentative communication devices as those who want the iPhone, but I’m hoping that the prices go down. $8,000 – $17,000 is way too much money for me to spend on something that I think needs to be cheaper. I’d rather buy a minivan.