Month: October 2009

Last Thursday, Vince, Jeremy and I went to the Alamo Drafthouse. The Alamo is a movie theater where you can eat a full meal during the movie and they also serve alcohol. Were we in Austin, TX – the home of the Alamo? No! We were in Winchester, VA – to the Alamo’s first franchise outside of Texas! So why did we travel more than 1.5 hours on a work/school night to go to the Alamo?

Two reasons. First, we did live for a while in Austin, TX where the Alamo is an institution and where we did spend an evening enjoying beers (Jeremy) and waiting for labor to kick in (Doris and Vince), so the three of us have some fondness for the Alamo. Second, it just turns out that my mentor (and good pal) at work is married to the guy who’s family is opening the first Alamo movie theater outside of Texas. So we got to go to family and friends night which started about 2 hours after they got the permit to turn on the stoves.

It’s a little fancier than I remembered it being in Austin. Stadium seating with embroidered logos. We saw Up, which freaked our sensitive soul Vince out a little.

I went out to Fairfax, VA at 7 am. It was cold. It was raining. Some rental tents were set up outside and we were commiserating that perhaps the fundraiser was going to be a complete washout…

The silent auction stuff was getting wet:

I was discouraged.

But with the generosity of the movie theater’s manager, we managed to set up inside the lobby and hold the event inside. After people started showing up and creating a more festive atmosphere, we were able to relax, keep warm and give out free coffee and bagels. Donations were collected, most of the silent auction items were shoved into a little corner where people could bid. And most surprisingly and encouragingly, the fundraiser collected about $30,000 at the event, the silent auction made $1,100. There were some families who decided not to come because of the weather and they are sending in their donations in the mail, so the real total will be ready at the end of the month – really not to shabby for a wet and cold Saturday morning. Hooray! Hopefully, we are just a little bit closer to finding a cure for Rett!

Kiki came down to participate in the stroll. Here we are hours after the walk, still wearing our crazy DC Martins tie-die T-shirts.

Well, it has been a cold, wet week here in the DC metro area. I’m a exhausted and a little sick. Nothing huge happened this week, just a bunch of little things that went awry that made me feel a little blue and now I’ve caught this cold (not the flu, no fever, no coughing). The weather has not been helping, it’s easy to feel blue when the skies seem to cry with you.

I’m feeling the most blue about the Rett Syndrome stroll-a-thon that is scheduled rain/shine for tomorrow. Coordinating the stroll is a huge undertaking (of which my part has been very, very small), so it’s just crappy that the weather is so crappy. The temperatures have been hovering in the low 40s (20 degrees colder than the seasonal average) all week and it’s predicted to rain all day tomorrow. Brr, not good weather for a stroll. We do have a plan B, we are gathering indoors at the movie theater right in front of the plaza where we would have gathered if the sun was shining. I’m still putting some finishing touches on some of the silent auction materials, I have about an hour’s work left, but since I’m sick I think I’m going to go to bed and finish in the morning.

If you’d like to donate to our valiant efforts to cure Rett Syndrome without having to go out in the cold and rain, here’s the link:

Donate here!

Be sure to designate “Fairfax, VA” as the program area and “Edda” in the comments for it to count towards our efforts tomorrow. Thank you faithful blog readers – good night to you all.

Things are exciting around here.

Spent some time sorting through all the adult socks after the weekend laundry run, we got rid of the loners and the ones that we never wear. It’s a little confusing, the kids are both starting to wear my socks so I think my socks are finding their way into the kids’ drawer. As I said, very exciting around here.

Edda went to the dentist today – she was superb. Didn’t fuss through the cleaning, didn’t freak out, they even tried to do the panoramic X-ray which means you gotta be still for about 30 seconds. Jeremy and Edda knew it wouldn’t work, but you know, and I’m impressed that they even tried. No cavities, but they did mention the “O” word. Orthodontist. For the underbite. Yikes. But not for another 6 months.

I have started running again, this would be Week 4 of my training. I follow the routine in The Runner’s Handbook. I’m trying to work up to 30 minutes of running 5 or 6 times a week. I went to my own physical check-up about a week ago and my primary care physician started mentioning that I really needed to increase my calcium intake (at least equivalent to 2 glasses of milk a day) and also to do weight bearing exercise for at least 30 minutes on most days. So I managed to say that I had been running for 2 weeks at the appointment and she said, great! just run as slowly as you can so that you will find it relaxing and that you will want to do it everyday. As for the calcium, I have to admit, I was a bit floored about the 2 cups of milk (I don’t know why really, because I do think about it for the kids) – I don’t do milk – actually my total fluid intake is quite low, but I’m figuring out how to improve my calcium intake so when I slide into menopause (!), I won’t lose too much bone mass.

Edda loves cheese balls. So perfectly round, so perfectly cheese-y, so perfectly yum. They also happen to come in an enormous jug. How are we going to get rid of a whole jug of cheese balls? One little cheese ball at a time, I suppose.

It’s Rett Syndrome Awareness Month! There are so many exciting things happening this month, lots of fundraisers across the country, most notably our own Fairfax Strollathon happening next Saturday morning.

I was having lunch with a friend of mine a few weeks ago and she mentioned that her brother-in-law, who doesn’t do Rett research, however, he knows a lot about Rett because he is a MD/PHD student in neurology at Baylor, said that Rett Syndrome is the “hot topic” in developmental neurology. It’s nice to hear someone in the trenches of the neurology field and is not affiliated with any Rett organizations say that lots of people are interested in studying RS. Just kind of a knowledgeable independent assessment on how excited researchers are about working on finding out all they can about the Rett gene and how to help girls like Edda.

I know that a lot of the push for job creation in this country is directed to clean energy or “green jobs”, but I fervently hope that the next big boom is the boom in biological research. The one that was suppose to happen in the 1990s, but was put off when the internet exploded.

Paul came by for an 18-hour visit (he was in town for a conference). He works at Ohio State, and I guess they are the “Buckeyes”.. For whatever reason, I thought that Buckeyes were a kind of horse or donkey, but they are actually nuts and Paul got Edda this fabulous buckeye nut necklace.

Jeremy’s cousin Eric is a professional camera dude – he’s done a bunch of stuff in the movies, it all sounds really cool. Every once in a while, he brings some cool equipment over for us to check out. Here’s a $30,000 video camera he rented for a gig and I got to hold it for a minute on my shoulder – it’s 15 pounds. Ugh. Heavy… The day before, he did 13 hours handheld with this monstrosity. I told him that he needed to get the Flip HD, and he said he couldn’t charge as much as he does if he showed up with a Flip. It was Christine’s birthday, so he got to videotape us singing happy birthday.

Vince had his first sleepover at the house this past weekend. I left Jeremy in charge because I skipped out and went to hockey. The kids made homemade pizza and watched a movie and then there was a lot of whispering in the dark, but everyone was asleep by 10 pm. In the morning, there was lots of Pokemon talk.

Jeremy made the super special sleepover breakfast, bacon and pancakes.

Edda is still getting up regularly at 5:30 am and wants to nap soon after breakfast, most times we can get her to avoid this nap as we want to try and encourage her to sleep past 5:30 am. However, during the super special sleepover breakfast, Jeremy was talking to me about some (extremely exciting, I’m sure) chemistry thing and apparently it was soooo boring, Edda had to fall asleep two minutes into the discussion.

We trimmed Edda’s bangs this weekend. It seems like we do this every 3 weeks – just because we always only take about half an inch off each time, just enough to clear her eyes… Jeremy is much more patient than I am, so he got to control the scissors. I got to hold Edda’s arms down so they weren’t flailing around and getting into bits of hair.

Vince trying to do some hairstyling. Edda has the longest hair in the house and so she’s the best candidate for braiding and pony-tails.

Edda tips by giving a Hi-five!

This morning at 5:30AM, I sent Mom driving off to her office alone. That hasn’t happened for a long while. As a matter of fact, she hasn’t driven the car for at least 6 months. I was really concerned her driving alone on this winding mountainous road about 7 miles from the gate to the plant itself. She just called me at her office and that was good.

We will not see each other often for at least 2 weeks and that is not usual too. We use to share one bedroom apartment & adjacent office cubicles, working on the same subject, checking each other work and calculations, driving one car and stick together 24/7/365 all the time.

Mom just can’t stop of being a Mom. Our refrigerator is completely full with all her cooking. I guess she is afraid that I will be starving for the next 2 weeks.

Well, I am going to bed again preparing for the first night-shift for at least 35 years.