Author: Doris

On my slow, short jogs around the neighborhoods, I have discovered a doggie gathering that happens between 8:30 and 9 am everyday. I’ve been marveling in my discovery because it’s a little on the hush-hush side and so it’s not advertised and I lived here a whole 1.5 years without finding out about it.

Vince hurt his knee on the way to the park, so he hitched a ride with Edda.

Here’s the doggie gathering. Ruby is one of 4 or 5 ginger colored labs, one of them even has the same color collar, so it can be hard to find her in the crowd (look in the lower left of the picture).

Edda making friends:

There are a few interesting tidbits going on in the Rett Syndrome world, mainly some media stuff and awareness raising…

My friend Ingrid, who runs Girl Power 2 Cure, was recently interviewed by Parents TV for a story about her daughter Sarah who has Rett Syndrome. She did an amazing job and I loved seeing all those baby pictures of Sarah and the video of Sarah walking! We saw Sarah in 2008 and she was relying on a stander/walker and not taking independent steps and since then, she’s learned how to walk, pretty fantastic!

There is also a new movie out, which opens tonight, called Extraordinary Measures – which is about a father of two critically ill kiddos with Pompe disease and how he takes a drug from its infancy and gets enough funding to create a biotech business and actually get it through clinical trials and finally being able to find a treatment for his kids. Because critically ill kids often don’t make such great movie material, I was pleasantly surprised when the NY Times gave it a thumbs up.

It’s based on a book called The Cure, which I did spend a few days last week reading through because I was interested in kind of learning how one develops a treatment for a genetic disease. I was a little disheartened to learn via the book that when the kiddos in the movie were diagnosed, there was already in the scientific pipeline at least a few approaches to treating Pompe in animals that were promising. Even with a lot of the science in place, it still took the father (who is a savvy businessman and decidedly not a scientist) of the kids over 5 years to get his kids treated with the medicine. There were issues with funding, scaling up, passing FDA approval, etc, etc. You know, I’m a scientist at heart, so when I think of finding a cure for Rett Syndrome, I think – well OK as long as it’s done in a lab and it works, it’ll be a year before no one will have Rett Syndrome, but perhaps that is not true.

Anyhow, Extrodinary Measures is running a contest: here. The video that gets the most votes gets $10,000. If you could vote for the Rett Syndrome video, that would be great! You can vote everyday until the 29th. The video is a little hard to find, just go to the bottom of the quilt and search for Rett and it’ll pop up.

My parents are leaving tomorrow for another nuclear power gig in California for the next 3-4 months. It was nice to have a chance to hang out together for the past few months – having dinner, watching the kids and seeing movies. (My parents and I watched Avatar together since I knew Jeremy wouldn’t go with me to see it. I should have sided with Jeremy – it was a silly, silly movie.)

(Here’s my dad – I’m sure he’s talking about how the government is too big (except when it comes to funding nuclear power plants 🙂 ).)

(Here’s mom and dad feeding a sleeping Edda at the pinewood derby. Yes, Edda eats and sleeps at the same time).

The morning of MLK day, we ate breakfast:

And took the jogging stroller off-roading:

Here’s Edda displaying the reclining capabilities of the stroller (and Vince showing off a big bag of trash):

She turned 9 yesterday! My first baby is 9! And the day before she turned 9, she finally retrieved a tennis ball for the first time in her life! She has never wanted to play fetch even though she’s a Labrador RETRIEVER! So many exclamation points! You can teach an old dog new tricks!

After I did my little presentation in front of the school board, Jeremy commented to me that he very rarely gets to see me in a “professional” light. I had dressed up a little to go to the school board – a sweater set and dry-clean only pants and I delivered a pretty “professional” type presentation. I laughed and said that not only did I take talking to the school board seriously, but also the night before the school board presentation, I did kind of a fashion faux pas on “date night” and I was trying to make up for it.

The past few “date nights” have been kind of a fiasco for us, it’s hard to find restaurants at the right price point and sometimes we end up spending more money than we want to on food that isn’t very good. Also, we’d rather see the sights than eat, but that is kind of hard to arrange on a Tuesday night. So I’ve been on the lookout for cheaper and funner “date nights”.

What I found was alumni night at a science museum. Our graduate school was hosting an awards ceremony at a small science museum downtown with the assurance that attendees to the event would sit through a SHORT ceremony would get free access to the science museum. I had never heard of the science museum, but I figured I wouldn’t know anyone there and we could sit in the back and that there would be free food and drinks and we could enjoy the science museum.

So I show up right on time and I see the free food and the open bar. However, it turned out that everyone was dressed in suits and ties and there were no seats – no sitting in the back, only milling around and talking to people. I was dressed in a bright yellow T-shirt which advertised an LA rock station and black corduroys and white running shoes. Whoops. And it turns out that I actually knew some people there, so I was a little bit embarrassed. Oh well, at least it was cheap fun.

Free food:

Open bar:

Maryland doesn’t have a lot of funding for disabled kids – the money is really so short that when I’m on the phone with the state, they ask me – “Well, is Edda going to be homeless within 48 hours?” and I say no and then they tell me, well they only have enough money to help the folks who are imminently going to be homeless. So then I end up feeling that I need to be giving money to the state programs rather than asking for some help with a van modification or something.

Anyways, there was always this kind of extra bit of money that they put aside called “Rolling Access” where every year you could file a one time request and they would try and fund the request and distribute it among all the applicants. I don’t think the total was very much money in terms of the whole operating budget, I think the average pay out was something like $1000. Some people asked for help with therapy bills or camp bills. We asked for a jogging stroller about a year ago and we were finally lucky enough to get it, because a month after we got our check, the Rolling Access funding was cut. (That really wasn’t a huge surprise.)

I am very excited to go hiking again with the whole family. Hopefully, we can do it soon once all the snow melts away.

Last night, Jeremy and I sat in on the school district’s budget meeting. Our school district has 150,000 kids in it, it’s pretty big. The budget for this year is very difficult – as one can imagine, cuts need to be made and lots of people made impassioned pleas about keeping such vital services like buses, magnet programs and media specialists. Lots of people representing different clusters in the county got up and said basically we are asking for nothing, no building improvements, no special programs, we are just asking for no staffing reductions. Everyone is trying very hard to keep staffing in place.

We were there last night to try and save Edda’s preschool program, MPAC, which is run by the ARC of Montgomery County. Edda graduated from MPAC last June and we were sad to see her leave the program. MPAC has been a partner with the school system for over 30 years and was a wonderful place for Edda. Now the school system wants to no longer outsource the preschool program to MPAC, rather they want to create an internal program run by the school system itself. About 20 parents spoke out in support of keeping MPAC open. It was very emotional to listen to 20 parents of special needs kids talk about something important in the lives of their kids. Someone took video of my testimony! More information on Special Needs Truth ’08 blog.

Doris Lee: Testimony on Special-Needs Preschool from Mark Miller on Vimeo.