Thursday, May 31, 2007
and we made it to Maryland at about 6:30pm.
(I'm learning to dodge and burn using GIMP - a free photoshop-type software... you can see in the lower left hand corner, it was totally overexposed and I burned it in a bit.. but I still don't know how to make the edges less noticeable.)
Wednesday, May 30, 2007
Tuesday, May 29, 2007
We met lots of other Rett girls ranging in age from 2 to 25 and we met a lot of educators who really believe in the abilities of these girls. It was nice to see.
We came home on Sunday night, missed the tribute dinner and the science talk on Monday morning..
Jia (a cellist in the conservatory) and Bob took good care of Vince while we were gone. Tonight they played a duet for us.
Monday, May 28, 2007
Sunday I went out on a photo shoot with Eon and JT. Drove down to Santa Cruz, and went up the coast. We came across a ton of beaches, and a flock of kite surfers. I reminded me of one of those paintings you make in the first grade, where the sun is in the corner, shooting rays down, and the birds are curvy letter M's in the sky. I tried to capture that feeling... I swear there were about double the amount of kite surfers on this beach than what's in this picture.
Also we had a fun time at another beach, where JT lost his car keys, but didn't realize it until just after sunset, and it was getting dark. Ironically, this guy that was camping near the beach, had a metal detector, and we spent an hour beachcombing but to no avail. We did find some rusty nails and 17 cents. Woo hoo. JT's sister drove out to Half Moon Bay to give him some spare keys. The tacos we ate that night were delicious. :)
Thursday, May 24, 2007
There has also been occasional screaming and biting. We are all standing a little further away from her today since, although she can't coordinate her movements very well, she's got the accuracy of a shark going after a surfer's leg when it comes to getting you with her chompers when she wants to let you know that she's pissed. Yeow!
Wednesday, May 23, 2007
Vince whined not to go, he wanted to stay at home and watch videos. Edda wailed like a wet cat the whole way there. Jeremy couldn't talk because of his sore throat. I haven't showered in a few days. We were not at our best. But we made it and purchased a roll of Life Savers. Then we headed back home for afternoon naps.
Tuesday, May 22, 2007
P.S. We are all still sick as dogs, we are chugging ibuprofen every 6-8 hours and going to bed at 7:30 (except me - I stay up late blogging). I don't know why they advertise Tylenol for fevers because from my experimental data, Tylenol works as well as water for fevers. It does nothing! If your kid has a fever, go straight for the Motrin.
P.P.S. This advice given by a person with NO medical training!
Sunday, May 20, 2007
Saturday, May 19, 2007
However, there were two things we were allowed to spend money on: books - I remember going to the Crown Books behind the Dart Drug and picking out first Little House on the Prairie books and later Sweet Valley High books and second, food - I remember going to the Giant with a hand basket and Donald and I would each carry a handle and we'd walk up and down the isles filling the basket with whatever caught our fancy.
So now that I'm grown up, those are the two things I like to spend money on. I don't have many gadgets, don't buy any makeup, I have fewer clothes/shoes than Jeremy. I just love bookstores and grocery stores.
My bookstore habit was getting pretty pricey, so now I've replaced that habit with libraries mostly. But I've never paid much attention to how much we've been spending on our grocery bills. The year Edda was born, I really ramped up my cooking skills and I pretty much had a different dinner on the table every night for 6 months. This involved reading lots of magazines and cookbooks and writing down ingredients on a shopping list and buying whatever I needed - jars of paprika, marmalade, capers, fish sauce, adobo sauce. It was a lot of yummy dinners, but also pretty high grocery bills.
I'm not back up to speed on cooking like that yet, living in Singapore meant that a lot of ingredients I was familiar with weren't available unless I trekked into downtown and here, well, it's just a mess here - but I have made a great discovery on my quest to spend less money on groceries!
The store brand!
You got store brand organic milk, organic sour dough bread, frozen lemonade concentrate, cottage cheese, and cran-rasberry cocktail. Sitting right next to the thing that you want, there is a store brand equivalent sitting right next to it, usually about 25% less expensive. I know they've had this stuff for years, but I guess I didn't pay much attention to it. You know, I'm so used to buying Land 'o Lakes butter that it just felt weird buying the store brand. Also, it's been 5 years since we've owned a TV, maybe it's just taken that long to debrainwash me from buying the branded stuff. Who knows! I just love a good bargain.
Friday, May 18, 2007
However, it seems I can't keep a promise to myself. In Singapore, our apartment was furnished 100% IKEA even down to the wine racks and the bathroom mats thanks to our landlord. And now I see my U-Haul vow soon to be broken as well. I think we might save thousands of dollars by hiring guys locally at both ends to load/unload and renting and driving the damn U-Haul ourselves. Hmmm. We are waiting for a 2nd quote from a mover tomorrow and then decide. As long as I don't have to lift the washing machine.
Didn't we just unpack? Oh yeah, that's right, just 3 weeks ago!
Vince is a little sick today (he's wearing his favorite Sponge Bob pjs!).
Thursday, May 17, 2007
Wednesday, May 16, 2007
We saw oil paintings:
They did have a children's room where we could all chill out. Edda and I dressed up like early settlers.
Tuesday, May 15, 2007
She's eating a pancake breakfast, which I usually consider too fancy for the weekdays, but if you use pancake mix, you just have to add water. How complicated is that? I don't know why I reserve it for the weekends, I think it's just that the syrup is too sticky and messes are to be contained to the weekends.
But for us now, everyday is a weekend. Ruby is so confused, every morning, she waits by the door to go to the park or on a hike and I have to explain to her, no sweet doggie, I'm sorry, it's Tuesday and we aren't going anywhere even though it's 9 am and everyone is still at home. Her ears go limp. Sheez, I wonder if I could teach Ruby PECS (Picture Exchange Communication System) or how to use some sort of computer-talking device that Stephen Hawkings uses, I bet she'd be really good at it, maybe she could tell us her thoughts on our management of the family. "You guys are just not alpha enough, look at Vince, he leaves crumbs and messes everywhere he goes and Edda gets whatever she wants by screaming her head off, is that discipline? You know I'm a total softie, but you guys have to step up to the plate." We had a small therapy session with Edda today with her PECS, she just laughed at us like we were idiots and refused to tap the cards. Grrr, so frustrating.
Besides getting paid and being able to pay your bills, having a job also allows one other nice perk - you get to not spend every waking moment with your spouse. Even though Jeremy and I get along as well as Bert and Ernie, we still do have a need to spend some time apart. Hence, I found myself alone at the local Target looking at cool crap and not being able to buy anything because of our new budget of - shelter (mooching off my generous and wonderful parents), food (eating all the stocked food in the pantry and the freezer) and clothing (only if it's completely worn out and you will be on the street naked or freezing without it). So basically our budget is zero.
Monday, May 14, 2007
Sunday, May 13, 2007
For mother's day, we climbed Burger Hill.
Our first stop was Nathan's hot dog stand - in operation since 1916 at the same location. Every year on the fourth of July, they hold a hot dog eating contest. How many hot dogs do you think you can eat in 12 minutes? Well some Japanese dude can eat 53 3/4 hot dogs! Puke-o-rama.
We had chili cheese fries for lunch.
Went on some kiddie rides:
Went to Emy's apartment in the hip Williamsburg area of Brooklyn (you can pretty much see her whole apartment in this photo).
Then we went to the playground in her neighborhood (Emy had never noticed it before - it's huge).
And had italian ice.
Friday, May 11, 2007
I feel a kind of lightness and happiness, things were getting a bit stale at Jeremy's work, but we were kind of reluctant to give it up since he had such a history with it and he made pretty good money and with Edda's diagnosis, we wanted to settle somewhere for a few years at least. But now we have a little gift of time, Jeremy's got a bit of severance package, the health insurance also continues for a little while and we have my parent's empty house to move to. So now we have a chance to start fresh and clean!
Yesterday, less than 24 hours after Jeremy lost his job, I was at the IEP meeting in New York which was kind of strange. The IEP meeting is the yearly meeting for special needs kids to determine the services for next year - all the occupational, physical, and speech therapies as well as the school and the type of environment that you'll have. Will Edda have a 1-on-1 aide? Will she have physical therapy everyday? Will she be integrated into a class with typical kids or will she be in a class with only special needs. That type of stuff.
The IEP meeting was in the afternoon and that morning, I went to an ABA school which I saw and I liked and I had heard some rumors of people not really "believing in the philiosphy". ABA is Applied Behavior Analysis which is a fancy way of saying that there is a lot of 1-on-1 tutoring where the teacher places flash cards to teach.
So you can teach the alphabet, you can teach how to talk to a friend, you can teach how to perform any task. So let's say Edda is going to learn how to read, you would put flash cards in front of her and have her choose the letter "A" correctly 10 times. That's the trial part. So it doesn't look very much like preschool, it looks like rote training. The parent advocate at the IEP told me that she cried after taking a tour of the school. It's very little interacting with typically developing peers, very little "free play". My dream is to have Edda communicate effectively enough to participate in mainstream class by kindergarden or first grade, but I feel like she has to make some progress with the communication. All the people at the IEP looked at me as if I had an extra nose for wanting to go to this ABA school. But it all doesn't matter because we won't be here.. Ha Ha!
Thursday, May 10, 2007
Tuesday, May 8, 2007
Edda's IEP is going well I think. It's like I'm writing a thesis again. I'm trying to envision an educational program that's appropriate for her - basically what I want the school to work on for the next year. It sounds simple, but it's basically convincing the school district to spend money on your child and it's hard because there, of course, is a limit on the total budget. Of course, what I'd really want is for Edda to be able to do everything a typical 3 year old can do and forget about this IEP, but that's how it goes.
And we are looking for a house. I liked 3 of the real estate agents who were hosting open houses on Sunday. We are going through the Buying Houses for Dummies book and doing all the things that they suggest even though I must pick up the phone and ask perfectly good strangers for answers. We asked a million questions to 3 agents, then asking for references from the agents and then asking those people a bunch of questions.
For dinner tonight, we BBQed indoors:
Monday, May 7, 2007
Sunday, May 6, 2007
I think a lot of people get very dreamy when they think of a house. How they are going to decorate it, how they are going to garden, all the great BBQs they are going to have. I mainly think about how much lawn work we are going to have to do and how expensive it's all going to be. I really don't like being beholden to a big mortgage payment, I like not being absolutely dependent on a job. I like having some money saved up and expenses low, but it's not really going to happen with a house purchase. So when I'm at open houses, I usually feel a little queasy.
Anyways, what interests me most about a house isn't the house itself, it's the neighborhood and the people that live on the street. Are they going to be my friends? Will Vince be able to go to walk their houses and play? Will someone watch over Edda in a pinch if I have to go to the gynecologist (it's really hard to watch her when you are trapped in the stirrups, I've tried it before.) Will I find a mom who will get up early with me to go running with Ruby? Or will it be a terrible thing where people complain that you left your garbage can out 12 hours too long or there is a big squabble about who pays for the snow plowing in the shared driveway? It's all a mystery and hard to find out.
In order to fortify ourselves - we had McDonald's for lunch. I'd forgotten about the indoor playgrounds, they didn't have them in Singapore.
Also, this morning, we saw some locks on the Eric Canal. Kids and dog were afraid to cross the lock gates, so they were carried and escorted one by one.
Saturday, May 5, 2007
The Cohoes Falls look a lot less scary this week. The total volume of water going over the falls has gone down at least 80% from last week.
Let's say the correct instructions are:
OK, so the body knows that when it sees the step "aaa" it knows to begin building the protein and when it sees "zzz" it knows that it's done building the protein. The "zzz" instruction is called a "stop codon".
So what can go wrong with the instructions? In Edda's case, there is a "deletion" which means one of the letters is missing, so you get instructions like this:
6. ffg (the letter "f" is missing, everything shifts over 1)
So for Edda, starting a certain point, all the instructions are messed up, every single step is "misspelled".
Another way that the instructions can be screwed up is called a "nonsense mutation". These look like this:
6. zzz the insertion of a stop codon!
So in step 6, the body sees "zzz" and stops building the protein. But if you figured out a way to get past the "zzz", the rest of the protein can still be built because the rest of the instructions remain correct.
So this is what someone has figured out, how to skip over the stop codon! PTC Therapeutics has a drug called PTC124 which enables the body to go past the stop codon and build the rest of the protein. How they figured out to skip this misplaced one and not all the other 100 million correct stop codons in the rest of one's genetic code is a mystery to me. I think they are publishing in this month's Nature, but I haven't seen it.
They are testing these already in patients with cystic fibrosis and Duchenne muscular dystrophy. They estimate that 20% of all genetic diseases are caused by nonsense mutations.
So this development, in addition to the recent news that Rett Syndrome can be reversed, puts a real chance of a cure for Rett Syndrome within the next 2-3 years for at least some folks suffering from Rett Syndrome.
Friday, May 4, 2007
Thursday, May 3, 2007
Wednesday, May 2, 2007
I used to be a much more staunch advocate (with Vince, I did do 40 hours of labor without any pain medication and when I look back on myself I just think "Why did I do that?" But at the time, it's what I wanted to do, so whatever..), but since I've become a mother 5 years ago and especially dealing with Edda and her needs, my views have softened quite a bit and I'm a live and let live about these things now. Not everyone has the same circumstances and priorities and that's OK by my book.
My neighbor is really into all the granola-ness and invited me today to the Honest Weight Food Coop to the natural parenting meeting. I had a great time mainly because Edda had a great time - walking around and seeming really pleased to be in the middle of a whole bunch of babies. And everyone was very nice to us and accepting. It was nice. The food coop is cool too. Just what Whole Foods is suppose to be like before they became WHOLE FOODS, you know what I mean?
On a more stressful note, on the way out of the parking lot of the Coop, I had a fender bender in our rental minivan. I can't decide what happened. I was behind another car making a right out of the lot into traffic. That person made a right without incident. Then I pulled up, stopped, and looked to my left for oncoming traffic. When it was clear, I turned right and then hit a car with my right front bumper. Of course, I have a picture
The driver immediately came out of the car and said that he was just "parked" there. But do you see how he's parked in the driveway of the coop? How the curb starts right after his front wheel? I think he went past me on and then stopped right in front of me. Ugh. But I was moving and he was not.
Thank goodness it was only the cars and no one was injured.
Heh. I can't believe the storm happening at Digg right now over the censorship of the HD-DVD encrpyption keys. I wonder if there will be any change or hit to Digg's popularity or usefulness. Perhaps Digg has jumped the shark?
And maybe something Brian can appreciate: (It's not a very exciting video)
Tuesday, May 1, 2007
The last time we got together, she told a funny story about how she got rid of her toaster. I looked at her and asked what she did when she wanted toast. She said, "The oven toasts just fine! I can't have 2 things in the kitchen that do the same thing." I couldn't believe it. No toaster!
So, Sheila, I though of you fondly when I found Jeremy this morning, bent over the open oven door, toasting our morning breakfast in the oven.
We started visiting schools for Edda - today we went to the Spotted Zebra Preschool (love the name). This school was opened in 2005 by a parent who wasn't satisfied with the preschools she saw for her autistic son. It's an integrated program - 12 kids in each class, 6 special needs and 6 typical kids. They focus on kids with language and social delays. Edda has more physical needs than they typically deal with. They are also full for the fall, so we'll keep looking.
But we did take some time to enjoy their playground (Jeremy in his work clothes).
Our sweet, next, next door neighbors invited us for dinner tonight. Vince and I made a pound cake for dessert. I'm not sure what is going on with our oven - the recipe said 50 minutes at 350F and I think I had to bake it for twice that length of time. So frustrating when you go in to get a cake and the top is still liquid. Ugh. Also, I let Vince lick the beater.
I talked to Choon about life and stuff on Saturday. I mentioned to him that I'm sorta feel a bit purposeless in life at the moment. Sure I enjoy myself, biking and whatnot, but you know really, I've got no responsiblities. I've got no goal in life - I don't think I've really had a goal since college. He suggested that I come up with something to focus myself. His goal, of course, was to become a CxO (CEO, CFO, CTO), which made him realize that his regular job wasn't going to get him there, and so he quit and started is own company. It's definitely something that I admire.
I guess this come to the love part. I think part of the reason that I don't want to figure out my life right now, is that I'd want to figure out my life with someone. You know, have some emotional support or feel like we're building a life together. As people grow older, it seems more and more, than instead of forming something together, it's more about how someone fits into your life. I dunno. Seem rather... depressing.
Anyways, perhaps I'm forced to change my worldview at this point. Maybe I'm forced to go out on my own to figure things out. Can I say that I don't like it one bit?