Year: 2008

But whatever. HILARIOUS.

I’ll be heading out Friday afternoon to Chicago to the Rett Syndrome annual conference. I haven’t had much time to think about the agenda and I forgot to send a photo of Edda for the montage – but I just looked at the schedule and it looks great! Last year, I went with Jeremy, Edda and my dad. This year, everyone else is staying home to welcome Yvonne, our au pair, and I’m off to the Windy City.

I am a little nervous going because I’m going by myself and my online persona is a little more confident and outgoing than my “real” self and even though I am fond of all the Rett folks I know (both in real life and online), it’s not like I really know everyone and so I’m nervous. So is anyone doing anything Saturday night? If you don’t have anything planned, I’d love to hang out, maybe dinner and a movie? Should I post my cell phone # on my blog? I was all excited to see Sex and the City on Saturday with someone, but I found out that it isn’t opening until the 30th and that left me with Indiana Jones, which just doesn’t have the right giddy feel to it. (But it doesn’t mean I’m ruling out Indiana Jones, if that is what you want to see).

I had planned not to go this year, as our fixed expenses are going to be quite high once the house is bought. So in order to save some money, we used up some frequent flyer miles and I’m not staying at the hotel, rather I’m staying at the lovely youth hostel a few miles away and I also decided not to go to the tribute dinner, both of which I haven’t yet decided are good decisions on my part or not. It’s pretty much too late to change any plans, so I guess I’m going with the flow!

So if you see me kind of sitting in the back of the room by myself (or if I’m lucky with someone else), come and say hi! I’d love to say “hi!” back. I’m the Asian lady with the short black hair.

While I have never ordered anything from Zappo’s before, I found this article and subsquently, this blog post to be fascinating.

I was planning on going to work today for a few hours, but the sun was shining and it was a beautiful breezy spring day, that I decided to forgo the examination of patents and go outside with my family.

Today, 28 embassies in DC held open houses, so in the space of an hour, we visited Paraguay, Madagascar (in which they were showing the animated movie by that name which happens to be one of Edda’s all time favorite movies) and Korea. We tried to get into Japan, but we needed to make reservations and we are just not that organized.

In Korea, Vince played the traditional drums and Edda spent some time admiring the Samsung large flat-screen TV. I swear she was telling us that we needed one of those gracing our walls.

Video watching.

Chicken dance with Emy.

Jeremy had to see if he could guess which one was Vincent by feeling all the children’s hands.

Finally asleep.

I think Edda’s starting to have seizures. I have always put “seizures” in quotation marks because I am the Queen of Denial and I think, oh, she can still drink water, she is still looking around, it’s not a seizure, it’s just a hiccup, a little bump in the road, she’s daydreaming! But I have to admit now that – even though she’s having episodes only every 2-3 days – I think something is going funky in her noodle. All her teachers see it, all her therapists see it, I don’t see it so much because perhaps I’m in denial. So I asked around and found a recommended doc and we are going to see her.

This is what I predict – 24 hr EEG and then medicate with Depakote if we want. The appointment is in a month, we will see if my prediction is right.

(I love diagnosing a la the internet. I’ve been having some jaw pain over the past few weeks, I typed in “hurts to open my mouth wide” and I found out I have temporomandibular joint disorder! Who needs the doctor!)

A few notes:

I’ve decided that waking up at 4 am is for the birds, I’m back to my waking up at 5 am and if I don’t make my 40 hours at work, I’m taking vacation.

We didn’t get the house we put a bid on – they wanted more $, we wanted to pay less $. You know how it goes. I am kind of relieved.

A few great articles to remind myself that great medical miracles can happen everyday.

Gene therapy for childhood blindness in first clinical trial. This I am excited about because they use a viral vector to insert healthy genes into retina cells which were unable to function correctly and it works! They can see better.

A Child, a Bizarre Tumor and a Perilous Operation. This is completely not genetically related, it’s a surgical solution for a tricky brain tumor, but I just love stories of little girls (and their amazing doctors, didn’t I just say who needs a doctor?) triumphing over seizure disorders.

Classic Edda move. This is how she goes from standing to sitting on the floor, she sits on the couch and then oddles down to the floor.

I thought I would go back in time and grab some photos from the day that I first became a mother and Kiki and Pua pua first became grandmothers! (Don’t I look a bit bewildered? Sometimes I still feel that way.) Happy Mother’s Day to all mothers past, present and future!

I am feeling much better this morning, just in time for Mother’s Day. Yesterday I went to work and finished up some things which, of course, took more time than I thought it would. Also, Emy came by train from NY to help babysit on Monday and I picked her up from Union Station which I consider a great accomplishment on my part because I dislike intensly driving into downtown where one way streets abound, the traffic lights are on the corners and not hanging overhead, and I don’t know my way around and I haven’t yet splurged on a GPS system which I think is so fabulous, but I only need once every 3 months.

Also, last night when I was going to bed, Jeremy mentioned to me that whenever I post about housework, I always post in the first person implying that I am the only one who ever vacuums, launders or cleans the bathroom. For the record, Jeremy does more than his fair share of the housework.

We usually split the housework into our own preferences:

I like to: take out the trash, declutter magazines & papers (which I have learned over the years, is best done without asking too many questions), loading the dishwasher, loading the washing machine and cleaning the bathrooms.

Jeremy likes to: wipe horizonal surfaces, fold and iron (although lately he’s been doing all the loading too), cooking and grocery shopping

In terms of paperwork: I tend to do all the medical insurance and reimbursing paperwork for child care/medical expenses. Jeremy does the bills and the taxes.

We are a rockin’ TEAM!