Year: 2011

I might have sent Vince to school on picture day with his hair sticking straight up.

Beautiful weather for the stroll on Sunday – I think our final haul was over $35,000, maybe $40,000. Not too shabby! Here we are strolling, in our crazy-ass t-shirts. This is our 4th stroll and we bought these shirts 3 years ago and Edda is no longer really fitting into hers very well.  Of course, we didn’t get a group photo – somehow we always manage to end the stroll without a picture of all the girls.  Sigh.

I met this beautiful 4-month old cavachon named Amy! I asked (all curious and nosy) if she was housebroken yet and the answer was a resounding NO!

Movie night at the elementary school.  Every year, the elementary school hosts a movie night – they have a huge inflatable screen in the gym and hundreds of kids show up and make their parents sit cross legged on the floor to watch a movie.  This year it was Rio (which amplified my desire to own a talking bird).

Jeremy and Edda stayed long enough to enjoy the pizza dinner and then they skedaddled back home which was not the original plan.  Edda was already falling asleep and Jeremy can’t sit on the floor and -also- we thought we had set up camp on the “edge” of the viewing area so that our lawn chair and wheelchair weren’t blocking anyone’s sight line.  But after a while it became clear that our chairs were basically in the middle of the gym.  Oh well.  Anyways, I kind of wish I was the one to leave because the noise from the kids was so loud, I could never hear the movie and they never dimmed the lights 100% and so I couldn’t sleep either.    Vince had a great time though as can be seen from the photo above.  The first thing I think about when I see that photo of the boys is “OMG!  THE LICE ARE JUMPING FROM HEAD TO HEAD!”

It has been Rett Syndrome awareness month and I’m pooped. We went to three events within a three-week period and I’m emotionally exhausted from all this fundraising and general aware-ness raising. I do the fundraising because I love Edda. However, I’m a cynic and general pessimist and I no longer believe that a cure is around the corner.   It is too difficult for me to keep on hoping that Edda might someday be miraculously be able to talk, feed herself, go to college, get married. These dreams for Edda are no longer part of my world. My dreams for Edda are simpler these days – is she loved by friends and family? is she exposed to new experiences? is she making the most of what she is able to do? how am I going to get her into those fashionable skinny jeans? The stroll-a-thon (which was the last of the three events) happened yesterday and I’m glad that the stroll slid into the hours of Sunday night dinner.  I’m glad I got to go from being surrounded by my Rett Syndrome family to my own family.  I’m so glad that Edda got to enjoy the new Ben and Jerry’s flavor, Schweddy Balls. 
 

It was a nice quiet evening (except when everyone started dancing!).  Now if only Jeremy had shaken his booty…

I love my Rett Syndrome family.  Although I could do without Edda’s disability, I do like that I have a name for it and that I’ve connected with families all around the world who share similar struggles.  Today we participated in Blue Sky Girl event – which was an awareness event to let people know about Rett Syndrome.  We bought balloons in blue and yellow – blue for the sky and yellow for the sun.

All around the world, in designated spots with staircases, we were all suppose to climb up the stairs to show what girls with Rett can do.  Here we are at the bottom of the stairs:

And here we all are at the top!

Vince lost a tooth last night. The tooth fairy forgot to come. We were all a little embarrassed at her tardiness.

I got to hold 4 week old puppies this weekend!

 

Well, we walk to school everyday – but here we are in local cable TV glory – Ruby and Maxi get a starring role!

Excitement in the air!  Edda gets to trial an eye-gaze computer for the next month.  Jeremy and I went to Edda’s school this morning for the initial set up and training.  The county’s coordinator for augmentative communication looked at me in the eye and said, “Please be careful with it!” and I was confused because I thought that the computer would stay at school for the whole month, thus absolving me from actually having to do any computer work with Edda.  I asked nervously if the computer was coming home with Edda – and apparently the answer is – everyday on the bus.  Oh, it puts a little bit of extra work which I dread a little bit because I can feel the stress and frustration building already which I am trying to tamp down. AlI can say is that I’m happy that our one month trial is this month and not last month when we were all swamped with work.

Edda has no problem calibrating the system and her eyegaze is accurate up for 48 icons. Just imagine 48 spaces on the computer screen, if there is 1 picture of Dora in a sea of blank spaces, Edda can pinpoint that picture in no time flat. During this month, we are going to try and see if Edda can answer some academic questions – without showing that Edda can use it functionally, then most likely the school system won’t purchase the system.

After working about 15-20 minutes, Edda fell asleep. Her teacher gave her bunny ears 🙂

Here we are trying it out at home –

Both Jeremy and I rushed towards work deadlines for the end of the fiscal year (September 30th).  I don’t think I have ever seen Jeremy so busy at work.  Now that we are in October, a calm has settled in the house – I feel like I can catch up on laundry and take time for a nap or to listen to a bed-time story.  Jeremy has been able to take some time to make us a delicious chicken dinner!