Saturday, October 31, 2009
Here are the boys counting their loot. Edda is out cold.
Right now, Jeremy and Vince are collecting data to make a graph of types of candy. Chocolate is up, other sweets like sweet tarts and skittles are down.
The orange crocs were not part of the costume, but I think they make the costume.
Vince complained bitterly at dinner last night that the room parents had the audacity to hand out GRAPES for Halloween! (Gasp, how awful). Then I unpacked Edda's backpack this morning and told Vince that he wasn't the only one who didn't get candy, Edda got a surgical glove full of veggie puffs (and 5 candy corn). I could only look at this glove in amazement. Someone put really effort into making this Halloween treat. Wow.
Thursday, October 29, 2009
Tomorrow: two simultaneous Halloween parades and parties at two different locations, two excited kids all ready to be sugared up. Two working parents who actually need to do some paid work tomorrow during said Halloween parades and parties. It would be nice to have some back-up here...
I miss you all and wish you were closer (and so do the kiddos)...
Wednesday, October 28, 2009
I have talked before about my general dislike of therapy, so it was refreshing to see Edda enjoying herself at therapy - lots of laughing and giggling and lots of good eye contact between Edda and Deb - Edda pretty much ignored me during the session.
I love many of the therapists that we've worked with over the years, they have helped me through some rough emotional patches. I rely on them for advice and comfort because 1. they love Edda and 2. they work with lots of families with kids with special needs so I need them for perspective and I've found their advice comforting and very helpful.
Tuesday, October 27, 2009
Jeremy: Last night he lost his voice and today he went to Newark to give a talk. He says it went OK - voice wise. I haven't yet got the complete lowdown on the actual talk.
Doris: I've been sneaking Cheetoes at work. I'm all signed up to work from home - first day November 20th.
Vincent: He's loving Cub Scouts. For those who don't know, there is a long checklist of things you have to do to earn badges. Last night he made a birdhouse - used a hammer which was one of tasks on the checklist. There is a random screw in the top of birdhouse, because he had to master the "using a screwdriver" task.
Edda: School's going well. We are past the being asleep all day phase. Now she's pretty active and alert all day. Her right arm just went all rigid on me - hypertonic. I know she's transitioning from hypo to hyper, I just preferred hypo.
Eliana: I came home today to find her not feeling too well. I think she probably needs to sleep in all day tomorrow. She's decided to stay and help us out until the end of next year! Awesome.
Ruby: Still the best dog ever.
So far so good. Some days & nights were very busy - the field craftsmen were waiting for our approval on their field changes due to interference (eg., can't be built) or something else (eg., a tight spot) Upon approval, we were continue busy to get our paper work in order. This paper work is the legal document required prior to firing up the Reactor - going critical.
Some nights were not busy at all, just like tonight. Things are pretty slow ... zzz
And, besides working, Mom always keeps our refrigerator full. Does anyonte believe that a -> 68 year old man will suffer from hanger because his wife is working during his chow times?:) Anyway, twice a day, I can't wait until "6:00" to see Mom.
Well, Nuclear Power isn't 100% safe. But, nothing is 100% safe or even 90% safe. As a matter of fact, Nuclear Power is pretty safe and environmentally friendly too. Too bad, the current Administration isn't too enthusiastic to build more. Of course, we need to go "green", especially on energy. But, how "green" is "green"? Depends!
People just can't go "green" with much less jobs around. Nuclear Renaissance can bring home the beacon to many Middle-American families (including those of us who work all night), much more than wind and solar combined. And Nuclear Energy is affordable too!
Monday, October 26, 2009
Everyone was fashionably late - the earliest person came in at 3:45 and the last group of people came by at 5:30. We were a bit worried that NO ONE would show up, but we had a nice group show up eventually. Here's Vince wondering, "Where is everybody?"
Friday, October 23, 2009
I was a little nervous as sometimes Edda can be unhappy at these things. These days I'm in a pretty good mood, so it doesn't bother me that sometimes people stare at Edda when we are out and about if she's doing her "regular" Rett thing, but I really, really, didn't want to be parent with the crying, unhappy, unconsolable special-needs child - which still does happen and even though I can deal with it, it just sucks the life force out of the outing.
Anyways, I shouldn't have worried, I have never seen a happier girl.
In the pumpkin patch.
On the hay ride.
It was so great.
Thursday, October 22, 2009
We have a huge (10 inch across) mushroom patch in our front yard. Mushrooms are so weird, one day they aren't there, the next day - poof, you've got a huge cluster.
Wednesday, October 21, 2009
Last week, at Sunday night dinner, Christine taught me how to set up a sterile field to do wound care, mainly bedsores, which need to have their dressings changed every 8 hours (I think). Everything comes in a compact sterile box - gauze, gloves, tape?, scissors?:
Gotta set up your field:
I'm sure "jazz hands" is part of the official protocol.
Tuesday, October 20, 2009
Monday, October 19, 2009
Two reasons. First, we did live for a while in Austin, TX where the Alamo is an institution and where we did spend an evening enjoying beers (Jeremy) and waiting for labor to kick in (Doris and Vince), so the three of us have some fondness for the Alamo. Second, it just turns out that my mentor (and good pal) at work is married to the guy who's family is opening the first Alamo movie theater outside of Texas. So we got to go to family and friends night which started about 2 hours after they got the permit to turn on the stoves.
It's a little fancier than I remembered it being in Austin. Stadium seating with embroidered logos. We saw Up, which freaked our sensitive soul Vince out a little.
Sunday, October 18, 2009
The silent auction stuff was getting wet:
I was discouraged.
But with the generosity of the movie theater's manager, we managed to set up inside the lobby and hold the event inside. After people started showing up and creating a more festive atmosphere, we were able to relax, keep warm and give out free coffee and bagels. Donations were collected, most of the silent auction items were shoved into a little corner where people could bid. And most surprisingly and encouragingly, the fundraiser collected about $30,000 at the event, the silent auction made $1,100. There were some families who decided not to come because of the weather and they are sending in their donations in the mail, so the real total will be ready at the end of the month - really not to shabby for a wet and cold Saturday morning. Hooray! Hopefully, we are just a little bit closer to finding a cure for Rett!
Kiki came down to participate in the stroll. Here we are hours after the walk, still wearing our crazy DC Martins tie-die T-shirts.
Friday, October 16, 2009
Well, it has been a cold, wet week here in the DC metro area. I'm a exhausted and a little sick. Nothing huge happened this week, just a bunch of little things that went awry that made me feel a little blue and now I've caught this cold (not the flu, no fever, no coughing). The weather has not been helping, it's easy to feel blue when the skies seem to cry with you.
I'm feeling the most blue about the Rett Syndrome stroll-a-thon that is scheduled rain/shine for tomorrow. Coordinating the stroll is a huge undertaking (of which my part has been very, very small), so it's just crappy that the weather is so crappy. The temperatures have been hovering in the low 40s (20 degrees colder than the seasonal average) all week and it's predicted to rain all day tomorrow. Brr, not good weather for a stroll. We do have a plan B, we are gathering indoors at the movie theater right in front of the plaza where we would have gathered if the sun was shining. I'm still putting some finishing touches on some of the silent auction materials, I have about an hour's work left, but since I'm sick I think I'm going to go to bed and finish in the morning.
If you'd like to donate to our valiant efforts to cure Rett Syndrome without having to go out in the cold and rain, here's the link:
Be sure to designate "Fairfax, VA" as the program area and "Edda" in the comments for it to count towards our efforts tomorrow. Thank you faithful blog readers - good night to you all.
Tuesday, October 13, 2009
Spent some time sorting through all the adult socks after the weekend laundry run, we got rid of the loners and the ones that we never wear. It's a little confusing, the kids are both starting to wear my socks so I think my socks are finding their way into the kids' drawer. As I said, very exciting around here.
Edda went to the dentist today - she was superb. Didn't fuss through the cleaning, didn't freak out, they even tried to do the panoramic X-ray which means you gotta be still for about 30 seconds. Jeremy and Edda knew it wouldn't work, but you know, and I'm impressed that they even tried. No cavities, but they did mention the "O" word. Orthodontist. For the underbite. Yikes. But not for another 6 months.
I have started running again, this would be Week 4 of my training. I follow the routine in The Runner's Handbook. I'm trying to work up to 30 minutes of running 5 or 6 times a week. I went to my own physical check-up about a week ago and my primary care physician started mentioning that I really needed to increase my calcium intake (at least equivalent to 2 glasses of milk a day) and also to do weight bearing exercise for at least 30 minutes on most days. So I managed to say that I had been running for 2 weeks at the appointment and she said, great! just run as slowly as you can so that you will find it relaxing and that you will want to do it everyday. As for the calcium, I have to admit, I was a bit floored about the 2 cups of milk (I don't know why really, because I do think about it for the kids) - I don't do milk - actually my total fluid intake is quite low, but I'm figuring out how to improve my calcium intake so when I slide into menopause (!), I won't lose too much bone mass.
Sunday, October 11, 2009
Saturday, October 10, 2009
It's Rett Syndrome Awareness Month! There are so many exciting things happening this month, lots of fundraisers across the country, most notably our own Fairfax Strollathon happening next Saturday morning.
I was having lunch with a friend of mine a few weeks ago and she mentioned that her brother-in-law, who doesn't do Rett research, however, he knows a lot about Rett because he is a MD/PHD student in neurology at Baylor, said that Rett Syndrome is the "hot topic" in developmental neurology. It's nice to hear someone in the trenches of the neurology field and is not affiliated with any Rett organizations say that lots of people are interested in studying RS. Just kind of a knowledgeable independent assessment on how excited researchers are about working on finding out all they can about the Rett gene and how to help girls like Edda.
I know that a lot of the push for job creation in this country is directed to clean energy or "green jobs", but I fervently hope that the next big boom is the boom in biological research. The one that was suppose to happen in the 1990s, but was put off when the internet exploded.
Paul came by for an 18-hour visit (he was in town for a conference). He works at Ohio State, and I guess they are the "Buckeyes".. For whatever reason, I thought that Buckeyes were a kind of horse or donkey, but they are actually nuts and Paul got Edda this fabulous buckeye nut necklace.
Wednesday, October 7, 2009
Tuesday, October 6, 2009
Jeremy made the super special sleepover breakfast, bacon and pancakes.
Edda is still getting up regularly at 5:30 am and wants to nap soon after breakfast, most times we can get her to avoid this nap as we want to try and encourage her to sleep past 5:30 am. However, during the super special sleepover breakfast, Jeremy was talking to me about some (extremely exciting, I'm sure) chemistry thing and apparently it was soooo boring, Edda had to fall asleep two minutes into the discussion.
Monday, October 5, 2009
Vince trying to do some hairstyling. Edda has the longest hair in the house and so she's the best candidate for braiding and pony-tails.
Edda tips by giving a Hi-five!
We will not see each other often for at least 2 weeks and that is not usual too. We use to share one bedroom apartment & adjacent office cubicles, working on the same subject, checking each other work and calculations, driving one car and stick together 24/7/365 all the time.
Mom just can't stop of being a Mom. Our refrigerator is completely full with all her cooking. I guess she is afraid that I will be starving for the next 2 weeks.
Well, I am going to bed again preparing for the first night-shift for at least 35 years.
Sunday, October 4, 2009
The final score was Caps 6 - Maple Leafs 4. I stood up and cheered enthusiastically for each goal and high-fived people I did not know all around me (which was incredibly painful) and it was a lot of fun. I ate the $9 pizza slice, got the Mike Green bobblehead, I learned about many things including all the cheers (C-A-P-S, Caps!, Caps!, Caps!), the horn guy, and that if the Caps score more than 5 goals in a game, one wins 10 free buffalo wings. Oh yeah, I learned a little bit about hockey too.
Metro got me there and back and was filled with people with the red jerseys.
Saturday, October 3, 2009
Tonight, it is the Moon Festival. It is a popular harvest festival celebrated by Chinese people, Japanese people (Tsukimi festival in Japanese), Koreans (Chuseok festival in Korean), and Vietnamese people (even though they celebrate it differently), dating back over 3,000 years to moon worship in China's Shang Dynasty.
Of course, there are moon cakes to celebrate. I have never developed liking of these cakes. Besides, I don't know what's in it. They stuff a lot of different ingredients that no one can really tell. But, a lot of people love them. Some of these cakes carry an astronomical price tags on it - one bite worth a thousand, therefore, can't afford [or, not worth :)] a bite.
Translations from Chinese are:
1) Tonight, you can enjoy reviewing the moon for more than 12 hrs in the whole country (i.e, China)
2) Moon Festival in Chinese
3) Moon Cakes in Chinese
Friday, October 2, 2009
Thursday, October 1, 2009
The federal fiscal year is over. I made it through my two years of being a probationary employee - now I'm a full-fledged federal employee. I passed my certification exam last month and I applied to work from home.
I have mixed feelings about working from home, I love my co-workers, I love going out to lunch with my coworkers, I love going to the on-site gym. I love that I can go up and down the halls and ask "Hey, do you think when they use the word "bonded" that it just means covalent bonds or do you think it includes Van der Waals forces and hydrogen bonding too?" However, I've been eating up sick time and vacation time like crazy from doctor appointments/school appointments and various things, I will be happy to be able to just shift my hours a little bit to actually use vacation time for vacation and to see the kiddos a bit more... Also, I think it will help relax the household a little more, I'll be able to do some more errands during the week, like going to Costo.