Wednesday, September 30, 2009

Date night.

For date night, we met at the CVS downtown. The little photo kiosk there is awesome... All set up to print passport photos. We should have done Jeremy's there as well. 29 cents.

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Date night continued in the streets of downtown Bethesda. Bethesda is a little bit fancier than our a little-further-out 'burb, so the quality of the bicycles parked near the Bethesda Metro stop shot up a price point or two. Jeremy got to ogle them and tell me how totally cool they are...

Batavus bike: price $1028 - has a cool built in lock for the back wheel.

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Breezer bike: $1160, cool little headlight setup. Doesn't it look like is owned by someone who is homeless? What's with the two duffel bags? This bike also looks to be locked by a very thin cable lock, it would take a thief two seconds to steal this bike. Sigh, maybe nothing gets stolen in Bethesda..

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Monday, September 28, 2009

Passport photos.

Jeremy took Edda today to Target to get some passport photos. After 1 hour, a handful of goldfish crackers, 3 attempts with a Polaroid camera, they left empty handed. The criteria for a passing photo - looking up, no smile, no teeth showing, mouth closed. We tried 60 times at home tonight, I don't know if we are going to be successful anytime soon.

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Sunday, September 27, 2009

Picnic!

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After we got home from the camping, we dried off, threw some laundry into the washer and turned around and headed out again. This time to the MD/VA/DC Rett Syndrome family picnic. Great turnout this year - and what do you know? It was not raining! A big plus! Whenever I get together with other families who have a daughter with Rett, I feel like we are all somehow connected by a spider web - a strong, light and invisible line - something that transmits a little vibration to each other where ever we go. OK, that was a little wacky. But you know what I mean.

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Shanghai-ChongMing Island Bridge


The Shanghai-Chongming-Island bridge will be open to traffic soon. It consists of bridges, land-based high ways and underwater tunnels. I think Mom is pretty excited about it. After all, she spent most of her childhood there.
Last time, we all went to Mom's home town by boat. This time, we can get there by car. Maybe, we can rent a car and drive ourselves.
Therefore, I am thinking maybe, next year, or next, next year. Jeremy, Doris, Donald, Vincent, Edda, Mom and I can go to visit Chong Ming together again. Mom has a house built there and she stayed there only for a couple days about two years ago. I have never had a chance to visit the house though.
Shanghai is my birthplace. In this trip, we can also visit Xiamen where my family originated, Taiwan where I grew up and Jeremy got some of his pay checks, and Hong Kong where Mom's Big Brother lives.
That should be an exciting trip for every one.

Camping - more adventure than we signed up for.

Now that we are home, warm and dry, I can reminisce and wax romantic about what a great time we had camping yesterday and that we are total studs for having lived outdoors in a downpour that lasted from 3 pm yesterday to 7 am today. It was so extremely wet - even Ruby was a little put off.

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There was hiking:

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Bonfire and s'mores:

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Bonfire #2 and skits:

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And Edda, the true trooper, who joined us in the rain for dinner and complained through the root beer floats - as soon as she was in dry clothes and tucked into a warm sleeping bag, she feel asleep within 45 seconds and pretty much slept through the night.

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Thursday, September 24, 2009

Organization.

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We bought some new shelves this past weekend. I always think buying more storage or organization stuff will somehow magically make the house cleaner or my life less messy. I know it never works, but I can still dream my little dream.

Jeremy went to the dentist today - no cavities! (He never gets cavities, he's been blessed with extra hard enamel.)

Jeremy volunteered at Edda school today. Today was the day that all kids go around to different booths and talk about disabilities and how sometimes kids with disabilities do things differently than most people, but it doesn't mean that they can't participate. Jeremy ran the booth where you got to play tic-tac-toe without talking, just using a big mac. He said that he had a nice time and the kids really got into it.

Wednesday, September 23, 2009

In and out of the car.

While we are still in the midst of working out our van purchase with the Bruno seat, we've been working with Edda to see if we could teach her to help herself into and out of the car. She's just a smidgen under 50 lbs now - so it's important that we keep the lifting to a minimum and also since Edda's mobility is one of her strengths, it's nice to be able to use her abilities of stepping up and standing to help us out and to challenge her body in different ways.

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Jeremey's worked out this system with a BOLMEN stool from IKEA so that Edda can step up onto the bench. Then we spin her around so her butt is facing the car and then we ease her into the seat while tucking her head a little so it doesn't hit the door frame. Very little lifting on our part - just a little spotting and steady-ing; then you reverse the process to get out of the car. There is a small problem when she falls asleep in the car and then you want to get her out - sometimes I just sit in the parking lot and wait for her to wake up and then I go into Target (somehow this always happens at Target) with her. I have found that a copy of the latest People magazine is helpful in passing the time in that situation.

Tuesday, September 22, 2009

Did you say something?

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IRSF has announced the first clinical trial for a drug which might help with the symptoms of Rett Syndrome. The clinical trial is funded with $200,000 presumably from all the fundraisers that parents and friends have put on over the past few years. The clinical trial is for a drug which is a FDA approved drug called Increlex which is used to treat people who are short, it's a human growth hormone.

I spent some time reading the original paper from MIT which talked about mice which have Rett Syndrome who were given the growth hormone and how much better the mice did with the human growth hormone. There were 9 areas that saw improvement, including locomotion, breathing patterns, cardiac patterns, life span, and brain weight. All this is encouraging, however, the scientists were also quick to note that all the mice still developed all the symptoms of Rett and did also have a shortened life span, albeit longer than the life span of mice with Rett and without treatment.

I also noticed in the MIT paper, that the drug was first administered when the mice were 2 weeks old and that it was a daily injection. I presume that at 2 weeks old, the mice were pre-regression - that the drug was given before all the definitive symptoms appeared in the Rett mice. Most human patients (Edda included) with Rett develop normally for about 18 months and then there is regression or loss of skills - something that Rett has in common with autism. So I don't know if the drug will do anything for Edda as she is post-regression, but I'm eager to hear how the clinical trial goes. It would be great to have some alleviation of some of the symptoms.

Onward!

Monday, September 21, 2009

Chips Olé!

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The school system serves a lunch called Chips Olé! and Vince has always asked to buy lunch on Chips Olé! day. This year, since Edda started kindergarten, she's gotten the opportunity to try Chips Olé!, but I wasn't sure she was going to dig it. During back to school night, Edda's teacher mentioned that everyone loves Chips Olé!, all the teachers stop by the cafeteria to see if there are any extra servings - something about that olé part is really yummy, she said. (For the record, Edda liked the chips and not the olé part). We figured that Chips Olé! was just taco mix on top of tortilla chips. We tried to recreate it at home.

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Sunday, September 20, 2009

Cupcakes in peril!

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The stove/oven stopped working at Sunday night dinner. All of the dinner (a mac and cheese variant called "Seth-a-roni", meatloaf and string beans) was cooked, but the cupcakes were still raw. The kids made a trek over to the neighbors to borrow their oven. Not only did they come back with baked cupcakes, they also came back with half a huge chocolate cake!

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Saturday, September 19, 2009

Scouting!

I decided this year that we would join the Cub Scouts. Our local troop is made up of a bunch of boys that Vince knows and likes from school and also the troop encourages (or actually requires) parents to be with the kids and volunteer during all the meetings and trips and also encourages siblings to participate in any of their activities. It was this inclusiveness of the siblings that drew me to this particular pack (Edda's going to do the Pinewood Derby!). I'm also hoping that we get to know a bunch of families in the neighborhood. It also helps that we went to the orientation for new scouts last week and Vince had a great time. So we are scouting. (I'm only 1/2 done sewing on the patch on the shoulder, that's why it's flying off at a weird angle).

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Being part of cub scouts means getting supplies, mainly camping supplies. So Jeremy and I trotted out or camping equipment (now not used for more than 7 years - the last time we used it, we hiked and camped in Colorado for a week far. far away from our parked cars). Can 4 people fit in a 2 person tent? No! Can 4 people fit into 2 mummy sleeping bags? No! The den leader suggested inflatable air mattresses and an 8-person tent so you have plenty of room to change your clothes and assured me that one could drive directly to where the tent will be set up. This is going to be the Ritz-Carleton of camping. I did not know people took air mattresses camping (with electric inflaters!) I'm trying to talk Jeremy into the air mattress instead of the air foam sleeping pad.

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Friday, September 18, 2009

No cavities, baby!

OK, this is about three weeks late, but I wanted to say that Vince had no cavities at his semi-annual dental exam. I think our biggest medical bills this year are from dental work, both for the kids and adults.

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Thursday, September 17, 2009

Quick trip to Philly.

I've took a few days off to have a quick vacation to Philly with a girlfriend. We walked a lot, talked a lot and ate a lot - of cheese steaks. I normally try and minimize my meat intake to only only one meal a day, but in the spirit of Philadelphia - I ate three cheese steaks in a 48 hour period. Yes, I'm still a little uncomfortable as it (they?) moves through my digestive tract, but it was really, really yummy. For those in the know, we went to Geno's, Pat's and Jim's.

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We also made time to tour Independence Hall and just by coincidence, today (Sept 17) is the anniversary of the signing of the constitution!

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Tuesday, September 15, 2009

Avocado Catcher (Patent Pending)































We have been very busy at work, more than 50 hrs/wk. But, we have also been busy to make a better Avocado Catcher. Several weeks has been passed and here they are:
1) Mom with Dad's Patent Pending Avocado Catcher.
2) Mom with Mom's Patent Pending Avocado Plus (Including Lemon, Orange, etc.) Catcher.
3) Mom conducted Field Test
Ha, Ha, Ha!

Monday, September 14, 2009

Hooray for me!

Well, I just wanted to say that when I got up this morning and heard about the Kanye West debacle at the MTV music awards, that the only two videos I mentioned liking on this blog were - Single Ladies and You Belong With Me!!!! I'm totally the perfect demographic for MTV! They are totally trying to market to 37 year old female patent examiners who don't own an iPod. Ha! I know a good video when I see one.

The derailleur on my bike has been giving me a little bit of trouble - missing some gears when I've been shifting. Jeremy spent a lot of time this weekend trying to adjust them into alignment. There are 2 screws and a tension-er and it was driving him crazy to optimize all three at the same time. Jeremy has a touch of dyslexia and this optimization was hitting all the right confusion buttons: right, left, tight, loose, more, less.

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Such a sweetie, trying to make my commute smoother and more comfortable. When I came home this evening - yup, you guessed it. Someone stole the rear wheel. Is the derailleur the part that moves or does it include the gears on the rear wheel? Can I say they stole the derailleur as well? Sucks to be my beat up, rusty old bike! I'm takin' the bus tomorrow!

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Happy Birthday

Doris, Happy Birthday!

love
Mom & Dad

Sunday, September 13, 2009

Not so fun fundraising.

I can not get over the deep seated feeling that when I try and raise money for Rett Syndrome, that I am begging. It is a very visceral feeling and something that I closely associate with a sense of shame and a dash of humiliation. I do not like to ask people to help, I do not like asking people for money. I have spoken other successful fundraisers and they say, oh, after you ask 10 people, it will feel like nothing, and I have asked 10 people, I've asked more than 10 people and I still feel awful. I think that other people do not feel this way (I know that there are professional fundraisers - the ones that work in development offices, their jobs just give me the heebe-jeebies, but I'm sure none of them would like to be a patent examiner), but it's what I feel and it makes me feel bad that I can not do this thing that might someday lead my daughter to be able to use her hands. I also feel like so many people put in so much time to raise $$ to find a cure, I can not let them be the only ones to carry the burden, I must do my part.

The Fairfax stroll-a-thon is coming up mid-October, so today I decided that I'd take Edda to the mall and ask stores to donate some gift certificates for our valiant cause. I'm a big chicken. I asked no one. Edda was pissed that I gave up. She was game, I was not. I am so lame. There really is no excuse.

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I tried to distract her with gold lame short shorts from American Apparel.

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Edda is also unimpressed with Apple products. Genius bar! I did not actually know they really called it the "Genius bar" - I just thought it was a nickname.

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Saturday, September 12, 2009

Fun fundraising..

It's been a weird few weeks. I wanted to say that it's been a tough few weeks, but that isn't exactly right. Somehow the past few weeks have seen a clustering of bad and scary news from my friends or the friends of my friends. There has been: someone diagnosed with multiple sclerosis in their early 20s, someone who died of a pulmonary embolism in their late 30s with three kids, the youngest is just 6 weeks old, someone whose baby arrived too early, someone with a history of mental illness had a suicide attempt and is now paralyzed, someone who accidentally ran off an unfamiliar curvy road at night and ended up upside down in a body of water and had to go in a rescue a trapped person, someone trying to take care of a stubborn, disabled relative from 1500 miles away, someone trying to navigate a child with autism through the aggressive teenage years. And I feel like I don't really know that many people. It's just whenever I open my mouth (or go on facebook) and say, how's it going?, a great big scary thing comes out of the other persons mouth. :( It's a wonder why anyone bothers to get up in the morning and go out the front door. All I can say is that life can be crazy, scary, unbearable and unfair and a lot of the time not very easy... Sigh.

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Anyways, on a lighter note, we all went to a Rett Syndrome fundraiser tonight and I had the best time... We went to Garba for a Cure, put on by the Shah family in Frederick, MD. I broke out the sari from Singapore and I'd forgotten how to wrap it around me - I tried to follow some directions from Youtube, but it didn't work very well. When we finally got to the fundraiser, two lovely Indian ladies helped me rewrap my sari around myself. I had more fun than I thought I would dancing and eating and chatting. I like it when that happens. Look, so many colors of fabric. Yummy!

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Friday, September 11, 2009

Afternoon fun!

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I came home today and this is what I saw - the music blasting and kids chasing each other around the dining room table.

Thursday, September 10, 2009

Thinking outside the box.

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We are trying to convince Edda that she loves to watch new videos... It's pretty hard, even though she likes Bob the Builder, the Wiggles, Blue's Clues, etc, she only likes certain particular episodes. We are trying to get her to watch broadcast PBS just so we don't have to have the same 7 videos going around and around the DVD player. It's working out OK, yesterday she laughed her head off watching an episode of Curious George she hadn't seen before..

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Health Care Debate

I watched Obama's speech last night. His goals were noble, but not realistic. First, according to his estimates that 500B could be saved by eliminating wastes in our current Medicare and Medicaid programs. This amount of money then can be used to support Universal Health Care he proposed without increase taxes. If his words were true, then why not save those 500B first to demonstrate that government really can deliver.

Remember, he promised the unemployment will be limited to 8% in summer during his various bail-out speeches. Right now, we are at 9.5% unemployment. And with one estimate, we are actually at 16% national wide.

Government, by its own very nature, is just not suited for certain jobs. For example, every time I visited US Post Office, no matter how long the line it was, and no matter how full its parking lot for their back office people was, there were only two Postal workers at the front desk working very hard to shrink the line. At FedEx and UPS stores, it was entirely different. More people will show up to serve and the line is always short and sweet.

Therefore, I kind of agreed with the Republican response to his speech with my additions, of course.

1) let us reform the health care system together, step by step.
2) no pre-conditions denial by the insurance companies
3) universal health insurance for our kids
4) practice preventive medicine more
5) reform mal-practice law (We need some safe guards, but not at current levels)
6) and please, no public (ie., government) option in any form or shape

In addition, no coverage for illegal immigrants . Of course, some of them are decent and hard working folks, but they are "illegal" nevertheless. No Medicare and Medicaid for those who have never worked in the USA and never paid our taxes for 10 years. Home makers are exempt because their spouses work.

Finally, President, Congress men and women should not have their own health care plan. They should shop in the open market, just like all of us do.

I am concerned a) Where is the money? b) I don't like someone else (including government) spend other people's money.

Wednesday, September 9, 2009

Loose ends.

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The plumbing got fixed, turns out that the blue stuff is fire stop which prevents flames from having easy access through holes cut in the floorboard and hopefully buying one a few more moments of escape time... We called a professional in for the repair, which was a good call because even thought it took him only a few hours, it would have taken us 14 trips to Home Depot and we would have probably made a mess out of it. There is still a hole in the ceiling and a hole in the master bedroom's closet, but at least there is no longer a flood every time that Eliana takes a bath/shower. To celebrate, I managed to find another leaking pipe, this time it's from the 1st floor sink into the basement. Hooray us!

The car battery did get replaced. Jeremy read on Consumer Reports that Costco sold the "best value" car battery - so for a brief moment, we thought about joining Costco. We haven't joined yet because we can only shop on the weekends and the lines at Costco are legendary on the weekends. Actually, forget about the check-out lines, the lines just to find a parking spot are legendary. So Jeremy went on a weeknight to check out their car battery section and they were out of the exact type that we needed. So instead of buying a battery from Costco and doing it ourselves, we sent the car to the shop and got a new battery there. I know, we could have been more thrifty, but what can I say - convenience won out because even though Jeremy and I don't drive, the kids are on the road quite a bit.

The kitchenaid is fixed. Nine dollars people! Nine dollars :) Notice the little envelope containing spare part from Ebay. I love Ebay for finding little crap like spare parts to home appliances.

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In thanks for dogsitting, Colleen and Eric got me this fabulous pink loungewear from the Outer Banks. You can't really tell from the photo, but it has some sparkly beading in the flowers. The pairing with the orange Crocs add a little Pop! to the outfit I think...

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Happy 09-09-09 everyone! Not as lucky as 08-08-08, but fun nonetheless.

Tuesday, September 8, 2009

Back to school night.

We went to back to school night for Edda tonight. It was very nice to spend some time with Edda's teacher and talk about what we wanted to work on this year and she's been very receptive to our ideas. It's a good mix of inclusion and self-contained classroom - I was a little hesitant to go either way full time just because both have benefits and drawbacks and really, I want Edda to lead the way to show me what she likes and what she dislikes. (Well, I know she dislikes art!) I hope to be able to participate a little more at Edda's school this year - we'll see how that goes and if work will cooperate.

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Edda had a little "episode" last night. I hate to call it a seizure, because I don't think that is what it is, but we haven't seen it in a long, long time. This one was pretty long - about 10 minutes, her eyes were dilated and she was shivering a little and quite rigid. I tried to take a picture of her dialated eyes, but it's hard when you have dark brown eyes to see the pupil. (I thought I didn't have pupils until I was in 6th grade because my brown eyes are even darker than Edda's.)

The kids are eligible to get free seasonal (not swine) flu shots at school this year. I looked at the form and it asked "does your child have any significant chronic or long term illnesses involving kidneys, heart, lungs, nervous system, brain or blood system". I never know how to answer this question - I think Edda is a perfect candidate for a flu shot (we've gotten one every year and since she sticks her hand in her mouth every 2 seconds, she is quite the disease vector) and I don't generally consider Edda to have an "illness", rather I think of Rett Syndrome as a "state of being", but it's true she has a chronic condition involving her brain - so I guess the obvious answer is YES. But then I think she's disqualified from getting the flu shot at school. Oh well. We'll see how that goes too...

Monday, September 7, 2009

One last BBQ.

Even though it was drizzling, Jeremy was determined to get in one last grilling session of the season. What is Labor Day without some grilled meat? Edda was very eager to check up on the meat..

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Jeremy ducked inside to make some of the sides and when he went back out, there was a pretty good sized grease fire going on. I even hauled the fire extinguisher out from under the kitchen sink, just in case it started to get bigger rather than smaller. Jeremy told me he could see the neighbors looking through their windows - they were probably wondering if they should call 911 on us. Once the gas was off, the rain took care of the fire and the meat turned out great (just a little charred on the outside, but perfect on the inside).

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