Year: 2008

There is an article in the NY Times about how science should be more of a part of everyday life. Sometime soon, I’d like to do some writing about science, most likely it will be on this blog about the advances in Rett Syndrome research. There are so many interesting things happening in the world of gene therapy in general and Rett Syndrome research in particular and I think I may be able to understand a lot of it, but I don’t have the time to really sit down and go through pages and pages of dense scientific stuff. It’s been a long time since I’ve sat down with a biology book (they are always the heaviest ones, dense with vocabulary and pictures and drawings).

Did I mention that Edda lost a tooth the first night I was in Chicago? Of course, you get no warning that the tooth is going to fall out, we just got a call from Edda’s school that everything was fine, but the tooth was coming out. She’s a little young, just 4 years and 2 months, but I have consulted with 2 dentists (ha ha, last night, my great friend from high school, Sue, brought her cutie baby all the way from LA and had a dinner party at her sister’s house and there were 3 dentists in attendance) and they both said that it was OK, girls tend to lose their teeth earlier than boys. Vince hasn’t lost any teeth :).

(Look closely at her lower front teeth!)

Edda’s IEP meeting is this Friday and I spent some time today reading over the proposed draft. To recap, Edda’s in a special needs preschool with other kids who are non-verbal and believe that Edda’s going to be in the same school again next year, which I am happy about.

I have watched the class a few times in the past month and there are kids who are definitely getting the hang of talking and will say a few words, there is a kid in there who is really good at using the picture cards (the teacher laughed when I asked about his PECS skill, she explained that he’s really good at it, but points to the cookie picture all the time over all other choices. hee hee), Edda is the most physically disabled of the group, she may be the only one who actually needs to be fed and watched super closely when they are out in the playground.

I like the school, I think we are getting the best services that are available in the county for Edda right now, and all the folks who work with her are skilled, excellent professionals, but going through the proposed goals for next year is distressing to me. Day to day, I think of Edda as “just Edda”, no labels – she’s doing her own thing, learning at her own speed. It’s all good. IEP reading says it all in black and white, “significantly below age expectancy”, “Edda’s significant cognitive, social/emotional, speech and language, fine and gross motor, and self care delays impact her ability to participate with typically developing peers in preschool activities thoughout the day.” Yikes – sounds baaad. It’s hard for a parent to read, no question about it.

In the IEP proposal, there is nothing really what I consider to be leading to be learning how to read or how to do math. However, I don’t want to barge into the IEP meeting and tell them that Edda can learn to read, really she can! when I have no evidence of it myself except for a bunch of other Rett parents insisting that it can happen. So yes, I believe that she can do it, but we really have no eye gaze or choice making in place. The school has been working on the eye gaze and the choice making, but it’s inconsistent and I really think Edda is just not motivated enough to answer.

I feel over the past year, Edda has been getting better about “telling” us about her needs and wants – mainly about video choices and when she’s hungry, but it’s not formalized like using pictures and getting a clear answer via tapping using her hand or eye gaze. It’s something we really need to focus and work on. I feel like I need to work on it at home and once I get a consistent yes/no or choices, then I can press my case a little better with the school.

We graduated from the “training” part of my job last week. These are the coworkers who started with me. We all work with patents that deal with chemical engineering issues. We are all nerds.

I did make the phone calls to the senators and congressmen that I mentioned a few days ago to ask for support for Rett Syndrome advocacy. I made three phone calls and someone (who sounds like they are 21) answers the phone. I make my request, “Hello, I’m Doris, I wanted to make an appointment with (so-and-so) to talk about an issue for the FY2009 Appropriations bill and ask for his/her support on this issue.” Then they redirected me to the office scheduler who I need to email/fax to request an appointment. So I sent out some emails Friday night, we’ll see what happens.

• Ferry boat made of several goat skins
• Flowers & Mom
• General Tso’s Tree, not general Tso’s Chicken – One of the trees that General Tso Planted when he was in NW China for Muslim uprising

We are a little bit tired around here. Since Edda is sick and it’s Yvonne’s first week, we are still not working a “regular” work week, Jeremy’s been going in late and I’ve been coming home early. And we’ve been staying up late chatting about various things. I’ve pretty much given up on reading/knitting on the Metro – it’s just for sleeping now, it’s a wonder I haven’t found myself at the end of the green line with a bit of drool sliding down the side of my mouth.

OK, a little catch up here. Here’s an article that Jeremy wrote for work “Land Use Changes and Biofuels“.

I’m putting this out there that tomorrow I’m calling these people:

Cardin, Benjamin L.- (D – MD) Class I
509 HART SENATE OFFICE BUILDING WASHINGTON DC 20510
(202) 224-4524
Web Form: cardin.senate.gov/contact/

Mikulski, Barbara A.- (D – MD) Class III
503 HART SENATE OFFICE BUILDING WASHINGTON DC 20510
(202) 224-4654
Web Form: mikulski.senate.gov/Contact/contact.cfm

Congressman Van Hollen
Rockville Office
51 Monroe Street, Suite 507
Rockville, MD 20850
Phone: (301) 424-3501
Fax: (301) 424-5992

I’m going to call them about getting the $500,000 earmark for Rett Syndrome advocacy. I’ll let you know how it goes. Do you really think a regular joe-schmoe can get an appointment with a Senator/Congressman just by calling their office? I don’t know, but I guess I’m going to find out.

Edda’s been sick since Monday, so Yvonne’s introduction to au pair-dom has been taking care of a non-verbal child who is extra cranky and home from school all day. Not the easiest way to start, but she’s (Yvonne, that is) is taking it all in stride.

Yvonne is also quite the sportswoman, last night we played softball together at a pickup game in Silver Spring, we were on opposing teams, she was the catcher and I played right field. I love right field, no one ever hits balls out to right field, I could pick flowers out there and it would not place the game in jeopardy. Never, ever did I think I’d play softball again!

Well, I know it’s been awhile since I’ve updated… Honestly, my life is more on facebook these days, but here’s the round up…

1) Wedding weekend. This is the start of my wedding season. 3 in 5 weeks. A two day affair for this one. Saturday was the ceremony/banquet and Sunday was an informal BBQ. Too bad it was a dreary weekend weather wise. But it was really awesome to see a lot of people I haven’t kept in touch with from college. It was pretty much a mini reunion. Fenney was in town, and of course, it was time to gang up on Joy once again. Laff. Good times.

Other randomness from the wedding:

– It’s funny when a wedding registry only has radiology textbook on it. 🙂
– pet peeve: I hate it when the officiant doesn’t ask you to sit down after the bride comes down the isle. We’re all just standing during the ceremony and nobody can see anything. Heck. I’m 6’0″ tall, and I couldn’t see anything from the 7th row. Look up officiants!
– At the banquet they had a camera and a printer setup, with costumes and props. So everyone got up during the wedding to take a funny photo and pasted it in a scrapbook, and signed. Nice touch. 🙂
– Love it when a gay man complements me on my clothing choice. Awesome.

2) Saw Indiana Jones. Spoiler ———————————————–> eh.

3) Swam in the bay on Monday. It was good. Aquatic Park. relatively warm water. My wetsuit. Crap I need to wash it now…

4) Had a semi-date Monday night – went dancing. Kinda unsure how it went… She can definitely move, that’s for sure. hahahah. Well I guess it’s good enough for a second date this weekend. 🙂 So. We’ll see what happens.

That’s it! Goodnight and have a pleasant tomorrow!

The IRSF conference in Chicago was great! This year was my 2nd conference and a lot of the information was very similar from last year, but it gives you that extra kick in the behind that reinvigorates my optimism and purpose in dealing with the cards that have been dealt Edda. It was great to finally meet in person the folks I’ve been getting to know for years online, the internet is a wonderful thing, but hugging a friend in the flesh is even better.

(I tried to email folks going to the conference, but I don’t have your email address! It’s not that big, we’ll find each other..)

Tomorrow our au pair arrives, so I want to step back and declare victory over the past 4 weeks, we made it through a month without paid childcare. Thank you, gong gong, pua pua, kiki, emy and gene who traveled far and wide to help out. And a special high-5 to gene who got Edda to go #2 in the potty. Woo hoo, lucky guy! Also, heartfelt thanks to the public schools who kept the kids occupied for most of the day and to all the bacterial and viral infections that passed over our house during this month.

I count myself a bargain hunter, I look for quality goods on deep discount. This means that although things in the house are of good quality and nice to use, nothing in the house matches. (As I have been looking at real estate for the past few months, I understand that my non-matching habits do not lead to houses that sell well.) Anyways, after a day and a half of deliberation about what sort of sheets to get for her room, I went and paid full price (shudder) for a “bed in a bag” at Target (granted it wasn’t even that expensive, but man, full price) – everything is so matchy-matchy. I looked into her room longingly last night, so neat, sparse and empty. I have to say I kind of want to move into that room.