Thursday, October 30, 2008

Princess Leia and Indiana Jones.

Look out evil-doers everywhere! Leia and Indy are out to get you!

DSC_0001

Oh no! Leia's down - she got ambushed by some nasty storm-troopers!

DSC_0003

We need the force! Call on the force to get up! The force (otherwise known as Jeremy) is coming from above.

DSC_0005

Ahhh, much better - now we are off to the Temple of Doom!

DSC_0006

Happy halloween everyone! Keep warm and safe and don't eat all the candy at once.

Tuesday, October 28, 2008

It's so freakin' cold!

This week, we finally turned on the heat in the house, it has turned so cold here in MD - I'm wondering if I need to break out the winter coat. I'm still trying to right myself emotionally from various minor injustices I've felt throughout the week, it involved way too many tears in front of way too many people, but I think I'm done thinking about it all and as Jeremy said, "it's not a guanine" - a reference to Edda's genetic deletion (806delG on the MECP2 gene) meaning that these things I'm shedding tears about are bound up in my ego and actually nothing really is wrong with life.

The kids are well, the neighborhood is full of kids and every afternoon after homework, Vince runs off to a number of different houses on the block which is great - but there is also major playground politics which are as complex as any adult group interaction.

Edda has been nursing an amazingly disconcerting sore on the corner of her mouth where she constantly stretches due to her hand mouthing. I'm sure it has to do with the sudden turn in the weather, I was actually worried that we needed to take her to the emergency room last night as it looked like it was getting infected and spreading to her lips, but luckily this morning, it looked a million times better with some antibiotic ointment.

Here's a hair salon photo from last Sunday night's dinner.

DSC_0091

Monday, October 27, 2008

Which dress should I wear?

This weekend, I'm going to my first gala event - a fundraiser for the ballet school that Vince and Edda go to. The dress code is elegant. I went to the thrift shop (I've been pretty lucky trifting these days) and got this:

DSC_0093

It's understated and shows a little skin which I guess makes it elegant. Then is occurred to me that I could wear my Chinese wedding dress:

DSC_0102

A little flashier - I'm only going to know one other person at the gala (Jeremy isn't going) - and I thought it would attract a bit too much attention. Anyways, which dress should I wear?

Saturday, October 25, 2008

The official make Doris feel bad week.

Jeremy and I have been married for 10 years, together for 13 and for that whole time, we've relied on each other heavily for friendship - we've moved every year during our time together - it's been hard to make friends when you are pretty sure you won't be around next year to hang out with them. So now that we've made the decision to stay here in the burbs of DC, I'm enjoying getting to know other people and going out and doing stuff with them (like having a mojito). What a new concept! So I did a few things this week, I went to the Obama rally in Leesburg with a friend from work, I went to the religious education meeting at church and then last night, I went out to dinner with women who have special needs kids and we all laughed and laughed and talked.

So why is this post titled the "official make Doris feel bad week"? Well along with all this greatness, I often felt kind of hurt this week by a slew of unrelated offhand comments about things I work really hard at. These are those comments made you know, as you are turning the corner to leave, or while you are chatting while waiting for the bus/elevator/another person. I know I shouldn't take these little issues to heart, but what can you do?

I stumbled upon the Obama headquarters in Alexandria, VA

DSC_0065

and I had a Five Guys burger for lunch.

DSC_0066

Wednesday, October 22, 2008

Barack in Leesburg, VA!

I got to go to Leesburg today to see Barack Obama. Can you see him? He's the dude at the podium.

DSC_0050

Tuesday, October 21, 2008

Mah-jongg

DSC_0012

We Got Our Ballots, Will Vote Tomorrow

As citizens of the Great State of Washington working in New Jersey, we got our ballots in the mail. Will vote tomorrow.

Monday, October 20, 2008

Yesterday's epic stroll-a-thon.

Fairfax is about 35 minutes away from the house - with a stroll-a-thon walk start time of 10 am, I left the house at 6:30 am to set up the silent auction - the plan was to have the rest of the family follow 2 hours later. However, Vince caught whiff of this plan and insisted that he leave the house with me before the sun got up. His reason? He wanted to be there as soon as the DJ turned on the music. He wanted to do the Electric Slide, the Makarena, the Chicken Dance, the Line Dance, and the Cha-cha Slide from the very beginning. Powered by the strength of half a bagel with cream cheese, he boogied his little tushie off for a good 2 and a half hours.

DSC_0013

The silent auction went well, the take was about $2700 for about 50 items which was down significantly from last year - but as the person doing the tally mentioned, it might have had something to do with everyone's net worth being 72% lower this year. I wanted to break last year's total, but I think about a month ago I realized it wasn't going to happen - with the move, the end of the fiscal year at work and whatever else got in the way, and I just had to let it go.

This year, I was a little more relaxed about the stroll, I got to meet a few more families in the area and chat with them - about 25 families participated. Also, our wacky shirts made a huge difference. Couldn't you just feel the smiley-face love? It's a nice way to get together and say hello. I just wished it had been about 10 degrees warmer.

Saturday, October 18, 2008

Fairfax Stroll-a-thon!

I'm spending the day at the computer - coordinating the bid sheets and the descriptions for the Fairfax, VA stroll-a-thon's silent auction tomorrow. I'm very excited this year because we have some crazy Team Edda shirts that Uncle Seth has silk-screened (by hand! he's crafty!) with our logo that you'll have to wait until tomorrow to see.

Blog fans and readers, if you would consider making a donation in Edda's honor, it would mean a lot to us here at Just Regular Folks! No donations too small or too large!

Donate now!

Here's a photo of us when Edda was a month old - when we had no idea of the quirkyness of Edda's genetic makeup. I feel like this was a lifetime ago!

DSC00818.jpg

Tuesday, October 14, 2008

Easy holiday fundraising.

I've put a few buttons to the left side of the blog - Goodsearch and goodshop. I've set these buttons up so that if you use Goodsearch to do all your online searching, it'll contribute about a penny a search towards finding a cure for Rett Syndrome. It's powered by Yahoo! search, which I have to say is not as sexy as Google search, but I've switched over to Goodsearch for all my searches, even if it is to enter "Google Patents" into the search engine. I'm a professional searcher, I think in the past 2 days, I've raised over $2 (that's 200 searches if anyone is counting, I search a lot) towards finding a cure - my goal is to fund 1 drug screen in the next six months just by surfing the web.

The other button on the web site, is Good shop which is probably better suited for folks who might not be able to tear themselves away from the Google search tool. Goodshop will donate a percentage of the $ spent at major online retailers (Amazon, Gap, Home Depot, Zappos, Apple, iTunes, eBay and LLBean to name a few, there are will over 700 stores to choose from). If you click on the button to the right, it's already set up to donate the $ to Girl Power 2 Cure which is directly funding research to find a cure for Rett Syndrome. So try and remember when you buy anything online, you can probably help us out!

DSC_0016

Monday, October 13, 2008

Meeting up with old friends.

DSC_0024

Jeremy got back in touch with his college chemistry labmate, Susan Matthews, via Facebook. Susan was attending medical school when she realized that she loved music more than medicine and became a professional organist and is now the music director at a church in San Francisco. We don't often get to hear organ music, it just so happens that Susan was in Maryland for a concert and we all trundled down to Annapolis to hear her rehearse and eat at the Macaroni Grill (our favorite kid-friendly place when we want to be a little more upscale than McDonalds).

DSC_0023

We hung out at the church playground.

DSC_0041

DSC_0037

DSC_0050

Sunday, October 12, 2008

My friend V. got married.

I went to Winchester, VA today for my friend's V.'s wedding. I met V. only 3-4 months ago, we report to the same manager at the patent office. She's the person my boss told me to talk to if I had any questions with my work. Well we hit it off pretty well - we talked about the details of her wedding everyday (as well as details about patents) and I was very excited for her.

She had already made up her invite list when we met and wanted to keep her wedding small, I was not expecting to be invited. But I did get invited a few weeks ago and I was so happy I got to go. I went by myself - I did not know anyone else at the wedding, but I just loved being in the country on a beautiful afternoon, with a good spiked apple cider drink and seeing all this happiness around me.

DSC_0046

I have a fantasy of being a professional photographer, maybe in another life. Well my true fantasy is to become a professional photographer and use the money I make as a photographer to find a cure for Rett Syndrome. Do you know the going rate for a wedding photographer is $2500 a day?

DSC_0015

DSC_0010

DSC_0007

Friday, October 10, 2008

Debunking the beds.

A few weeks ago, I decided that the bunk bed in the kids' room was a bad idea because the top bunk was really close to a ceiling fan. We decided that the bunk beds needed to be debunked.

I did not realize that it was going to turn into a king sized crib surrounded by a moat of loose Legos.

DSC_0022

Edda is still regularly getting up once or twice at night, and getting to her is incredibly difficult. Because you are not only stepping on a million Legos, but also, you have to hurdle over the side rails in the dark.

DSC_0020

Who's idea was this anyways? Ah yes, I guess it would have been mine, but I thought that we would have 2 separate beds and not 2 beds shoved together where the parents take turns sleeping on the crack that runs down the center of the two.

Edda's sleeping is driving us to distraction, we are trying Clonidine to get her to sleep better. I have to say the first night I gave it to her, a fantasy of us - the parents, being able to sleep through the night had me salivating and so giddy, but of course, she didn't sleep through the night. The 2nd night, (last night), she also didn't sleep through the night, but at least she slept until 5:45 am, which is much, much better than the usual 4:30 am. Jeremy was ready to give up, but I'm hoping the 3rd night is the charm.

Thursday, October 9, 2008

Work.

DSC_0001

Work is relentless these days. Every two weeks, I'm responsible for a certain number of "counts" - usually every 2 weeks, I have to do 8 counts. Generally, I get a count for starting a case (which is hard) and a count for finishing a case (which is pretty easy). The time frame between starting a case and finishing a case is about 12-18 months and there can be a lot of back and forth in between beginning and finish a case, which I get no credit for.

Anyways, I'm in this tough situation where I have to get all my counts from starting cases (hard) and I have no easy counts from finishing cases because I've only been examining cases for about 10 months now. And there is a lot of correspondence between me and the lawyers about cases that I've started, but haven't finished. The folders in the photo indicate a recent 2 week period where I worked on 19 separate patent applications.

I'm a little frazzled.

Basement Bargain Hunter

Mom is in the basement roaming around as a stock market bargain hunter. It is fun just watching her glued to the stock market ticker :)

Monday, October 6, 2008

Doing too much.

On Saturday, Edda and I went to ballet class. Although I usually post photos of Edda happy and smiling on the blog, Edda is often quite unpredictable and hard to deal with when her mood turns. When her mood turns, there is often nothing that soothes her, especially when we are out and about. It is this unpredictability that often has me on edge whenever we leave the house. I often find it draining to take the kids out and about by myself because often Edda will just turn on a dime and be inconsolable and I feel defeated, disheartened and drained. Jeremy, on the other hand, I think because of his more optimistic personality, tends to get a command performance resulting in cheerful outing from our Edda-mame.

Somehow, this weekend (perhaps because so much is going on right now) when Edda lost it at ballet, it in turn made me lose it and we ended up both in tears - sitting on the squishy couch outside in the lobby area of the ballet studio.

Slowly, one at a time, three parents from Edda's class walked over to our squishy couch spot and gave me hugs and some tender words which were wonderfully touching, but I couldn't stop crying and neither could Edda. We left early with a sweet hug from the coordinator of the class with a "We'll see you guys next week!". I think I'm going to make Jeremy go to the next class.

DSC_0042

Sunday, October 5, 2008

Crazy weekend.

What we did this weekend.
1. Ballet class and grocery shopping - Vince and Doris
2. Homestead Farms (apple picking) - Edda, Jeremy, and Yvonne
3. Post office and Target - Vince and Doris
4. Ballet class - Doris and Edda (which involved crying from both parties involved - long story, perhaps worthy of its own post)
5. Curried chicken salad - assembled by Jeremy
6. Church potluck - Vince, Edda, Doris and Jeremy
7. Swim lesson - Vince and Doris
8. Hippotherapy - Edda and Jeremy (and Shamrock the horse)
9. Church - Vince (attended class) and Doris (helper in the 4th-5th grade class)
10. Canvassing in Loudon County, VA for the Obama campaign - Jeremy
11. Sunday night Dinner - Jeremy, Doris, Vince, Edda, Ruby and the DC Martins.
12. Grocery shopping again - Doris

DSC_0040

Saturday, October 4, 2008

Thank you Kiki and Kappa!

Finally, we ordered Kiki and Kappa's housewarming gift for us - a special needs trailer for our bicycles (one of which is stolen so we can't use the trailer with that one)/stroller . It's called a Wike and we are very happy with it, it seems well built and the customer service seems very sweet. After we ordered it on the internet, they actually called us and talked about Edda to see if it would be good fit for her. We've been looking for something to replace our jogging stroller, which we used a lot to go into the woods, Edda is way too big for that now... We used it for the first time today to go apple picking (as a stroller) and to church for Saturday night potluck.

DSC_0044

Look - it can also be a Doris stroller!

DSC_0026

Skin Tags (II)

Karen, it works and thanks.

Rena is good at knots. I guess from her Dad who was a sailor. She was also very interested in operating on her only patient (me). She was tightened up the knot on one of the skin tags every night for the past several nights. It shrank a lot. Last night, she cut it with scissors. Before cutting, she, with a big weird smile on her face, assured me that it won't hurt. Right, I was her only patient. And of course, it was on my skin not hers.

She claimed that she had saved me $400/3=$133.33 also and, a few seconds later, started tackling the rest ...

Friday, October 3, 2008

Jeremy walks me home.

DSC_0005

Since my bike was stolen, I've been taking the bus back and forth to the metro. Sometimes on my way home from the bus stop, the timing works out that Jeremy meets me and gets off his bike so we can have a few minutes of chatting before we head home for dinner.

Denver, CO. Again ?

Our per diem income of not-taxable status is coming to the end in early November. Therefore, we may be sent to Denver, CO to help out on other projects for a month+ or two. This way, we can get to our per diem not-taxable status back for another year in Princeton.

It may or may not happen. But it doesn't matter, we like Denver a lot as well as here in Princeton. But just too bad, when it happens, it will happen during the Winter time. I am pretty sure that we can't carry our old bones downhill on the slope. Or, otherwise, it would be perfect. But, Donald & Doris can. Welcome!

I am going to dig up my previous credit card payments in order to locate that steak house we enjoyed a lot while in CO ~ three years ago. It is in a small, tiny-tiny town. But its steak is the best. Better than those steaks in the upscale restaurants we have visited. But, I need to check the weather first. Snowy roads, up-and-down, in CO is very slippery for my two-wheel-drive car, especially for the rear ones.

Btw, Mom has a perfect heart according to a much more sophisticated test last Wednesday. I are pretty happy about that.

Thursday, October 2, 2008

Rett Syndrome Organizations

There are a number of charities related to Rett Syndrome, they are populating my sidebar. It's a little confusing the relationships between all of them. When you make your donation to help out little (and big) girls like Edda, it would be nice to know which organization you are giving to and how their philosophy may differ. There are many, many hardworking people at all these organizations and I can not begin to tell you how much time and energy goes into everything that they do. Without these organizations, I would be lost.

A little history:

About 30 years ago, a woman named Kathy Hunter, started an organization called the International Rett Syndrome Association (IRSA). Her daughter, Stacie, was the 6th person diagnosed with Rett Syndrome in the United States and starting from her kitchen table, she knit together an organization that was very family oriented. Parents of daughters who are now in their 20s speak fondly of that time - remember, no internet, no instant messaging, no cell phones. It was really to Kathy Hunter's credit that she got all these far flung people together to form a community. IRSA started the yearly family conference, which I have attended twice now. I've found them to be uplifting and inspirational.

Then about ten years ago, a group of parents were disappointed with the lack of research that was being done to understand and cure Rett Syndrome, and a second organization formed, the Rett Syndrome Research Foundation (RSRF). This organization, co-founded by Monica Coenraads a year after her daughter, Chelsea was diagnosed. This organization raised over $11 million dollars over the past 10 years and led to the amazing mouse model reversal of Rett Syndrome. Their focus was to to fund research and do targeted experiments to find a cure for Rett Syndrome. It was under the auspices of RSRF that last year, I participated in the Fairfax, VA stroll-a-thon which raised $100,000 for research.

This past year, IRSA and RSRF merged to form the new International Rett Syndrome Foundation (IRSF) and this umbrella organization is taking the family care aspect and the research aspect into one centralized organization. Lots of people from both IRSA and RSRF remained on the board of directors of the combined organization. It is under this organization that I have visited the offices of Van Hollen and Kennedy to ask for money to fund research for Rett Sydrome.

However, during the merger, both Kathy Hunter and Monica Coneraads left the new organization. These two women are both energetic and passionate women, I knew that they would not be quiet for long.

Kathy Hunter has started RettHelp.org, a family support forum where you can "find the facts you need, and the care and comfort you so richly deserve in meeting the challenges of Rett syndrome".

Monica Coneraads has started the Rett Syndrome Research Trust (RSRT) this past year, and their website just went live! This organization's focus is to deliver clinical trials of a novel treatment strategy in 5 years. Two women, Ingrid Harding and Kelly Butler (who are my own personal daily source of inspiration) are working hard at Girl Power 2 Cure, which raises funds on behalf of RSRT.

Whew! Are you still with me? It is my biggest fantasy that Rett Syndrome be cured. Not a day goes by without me thinking about Edda being able to control her body and be able to speak! What a day that would be.

DSC_0034

Boo Boo Boo. Fantasy.



Well, just in case all you non-football types are wondering how the family NFL pick'em pool is going here it is. I must say it was pretty bitter for me to come in second 3 weeks in a row. Last week was a bad week for me too. Erg. We'll try better this week. I think I have a good set of picks. :)

In other fantasy news, I'm in 3 other fantasy leagues at the moment. In order of personal priority: 1 paid, 1 grudge match with a couple friends, and 1 non-paid.

I'm totally winning the grudge match. Yea! I'm sorta mid-pack in my paid league, and i'm dead last in the non-paid. 0-4. it's so bitter, I'm scoring a lot of points, but they've all been pretty close loses. I'm the only one totally defeated in that league. It blows. I better win this week damnit.

Captialism with American Characteristics

George Bush is one of the best students of Deng Xiaoping. Why? Because we are practicing not capitalism but "Capitalism with American Characteristics" now, vs. that China is now practicing not socialism but "Socialism with Chinese Characteristics".

They are now the number one capitalist country in the world and we are becoming the number on socialist country in the whole universe. We (to make us feel good), the government, own everything, on this continent. They have the most corrupt officials and we have the most greedy CEOs & representatives to match theirs, one by one.

Yet, 83% of their people think their country is in the right direction while we have only 23% think so. Not funny at all.

Wednesday, October 1, 2008

Rett Syndrome Awareness Month

October is Rett Syndrome Awareness Month - and we are very aware of Rett Syndrome, that is for sure.

DSC_0004

Consider donating to the Rett Syndrome Research Trust. RSRT is funding a project in which all FDA approved drugs are screened for efficacy in treating Rett Syndrome, for $168 dollars, you can sponsor the screening of one drug. Sponsor a Drug today! We only need 3000 donations of $168 dollars to screen all 3000 compounds.

Onward!