When I started teleworking, I was suppose to have all this extra time. Before teleworking, I was easily spending more than 12 hours a week commuting and with all “free” this extra time, I was going to be able to start a part time photography business, be more involved with the kids’ school and fund raise for Rett Syndrome research, blah, blah, blah, oh yeah, and keep the house clean. In reality, all I have done is ended up working more hours. It’s not really what I want to do with my time. Also, there is no question that working at home is a little isolating (I can go for days without leaving the house), so I’m reassessing and making more time to do more things – things like visiting Edda’s school.
Visits to Edda’s school are both heartwarming and bittersweet. The all the people who help Edda through her day are kind, loving, patient and determined. These include not only the professional staff, but the kids as well. Up and down the halls, kids were waving hi to Edda. At an assembly, a group of the 4th and 5th graders crowded around her chair and the chairs of the other special needs kids. Of course, it’s bittersweet because wouldn’t it just be great if she could feed herself and talk and be a regular kindergardener? On that note, new research out of Dr. Bird’s group just got posted on the RSRT website. It’s an interesting read – MeCP2, the protein that is screwed up by Edda’s missing guanine, was previously thought to be a regulating protein, something that turns genes on/off when they are needed. However, it turns out that MeCP2 is found in the brain at much higher levels than other regulating proteins and it’s binding in many, many places throughout the genome, not just at targeted genes. According to Dr. Bird, this may make the whole Rett Syndrome problem not as complex as previously believed (although it remains complex enough that it hurt my head when I read Dr. Bird’s interview with RSRT). Hooray for science!
Are you reading this and it’s still Wed, Feb 24th? Then go to MSNBC.com and look for the IRSF ad on the right hand side. Donations made there will be matched 100% via a matching grant. Pretty cool, huh?
I was so proud of my little blog the week of the blizzard, beautiful pictures day after day, there really was nothing to do all day except take photos. Well, there is now a lull in the blogging, all you get is a goldfinch. What’s going on? Nothin’ much. Vince is eagerly planning his birthday party. Edda’s sleeping in more, which is awesome. Jeremy and I have a touch of insomnia. He can’t go to sleep and I wake up early.
Last week, the Board of Education unanimously approved the proposed budget cuts to next year’s school system. This was the budget that I had gone to testify against passing. I was very disappointed because this most likely means that Edda’s special needs preschool might not exist much longer. It has been very difficult, we love so many of the staff at that preschool, it just is so sad to see such a great program go away.
Vincent is doing some last minute homework at the breakfast table. It is something that I hope does not become a habit.
I did not want to post about this until after I was for sure certain that everything is perfectly fine, but Edda had a pretty bad fall at school last Tuesday. I got a frantic call from the nurse and the teacher about Edda’s bonk. Apparently another student crawled quickly right behind Edda and even though the aide was right there, Edda took a step backwards and because she has no reflex to save herself from the fall, she went straight back and hit her head on the linoleum floor. I wince even now when I imagine the sound. Ugh.
A huge bloody knot, bulging at least 3/4 of an inch from her skull.
Anyways, I went to school, where she was happily watching a video and laughing. (They let her watch the video instead of going to art, because she ALWAYS falls asleep in art and they wanted to keep her awake until we figured out what to do). So as I’m driving to the school, I’m like, OK, I gotta take her to the emergency room because, well, mainly because of Natasha Richardson, but I get there and she’s doing great. A lot of discussion with the teachers/aid/pediatrician about what to do next, I eventually headed to the pediatricians office – where Edda, again, is fabulously herself. So it was decided that we’d keep an eye her and not go to the emergency room, because I had completely forgotten that getting a simple X-ray would involve the whole ordeal of being under general anesthesia. Anyway, Edda’s FINE, thank goodness.
There are more pictures to share here:
Remember the movie Extraordinary Measures? Remember I asked you guys to vote for the Rett Syndrome video? Well, we WON! The $10,000 is ours! $10,000 to spend on critical research. 🙂 Thanks to all who voted! May this bring us just a little bit closer to a cure!
On a different note, I started knitting again.
After so many feasts, it is about time to eat light. Mom and I started our $1.88 lean cuisine frozen food routine for dinner several days ago. Not bad at all. It is very convenient to cook in the hotel using microwave oven. It also keeps my glucose level low and have more time for something else. Eat out, sometimes, consumes a lot of time.