Edda and Jeremy ride the bus.

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We keep visiting the Children’s Hospital. This week, we had two appointments, the first one was with a social worker and the second was with a neurologist. The one was yesterday and was so completely unhelpful and discouraging and not helped by my lack of sleep but today’s was very nice and informative and good, perhaps due to a night of good sleep.

Yesterday started poorly. I spent a lot of the night upset and crying so I didn’t get much sleep. I left Vince with another mom who lives in the complex who’s daughter goes to the same preschool to take Vince to school and we took a cab to the hospital. The cab driver would not shut up! Yap! Yap! Yap! The whole way and even though I left a buffer of time, it took him 45 minutes to get there when usually it takes 25 minutes. Finally I had to yell at him to shut up (but I didn’t actually say shut up, but he pretty much shut up, but it was only for the last 10 minutes) so we were late to our appointment. So we went to see the social worker who pretty much just gave us a bunch of lists of possible schools and said that she would file an application to the governing board and then we’d hear from them in 2 weeks or so and then we’d be on a waiting list for six months to a year. So pretty much, we aren’t going to use the “public” system.

Today we went again to the hospital where we saw a neurologist. (This time we took the bus – faster if you can believe it and it cost 2.50 instead of 20 dollars.) Excellent appointment. She spent about an hour with us and Edda and these are her conclusions. The developmental doctor tested her for one kind of genetic disorder and that came back negative. The neurologist wants to test for another genetic disorder – Angelmann’s syndrome – because Edda has some of the characteristics of the syndrome. She thinks they can just rescan the data they got from the previous blood tests. Edda has been exhibiting autistic tendencies – low eye contact, not responding to her name, non-verbal – but it’s also confusing because she doesn’t seem “just autistic”, there are underlying physical problems (low-tone – inability to walk) as well as mental delays that seem not consistent with a diagnosis of just autism. The neurologist explained that some of these genetic syndromes will have autism as a pathology, meaning that the autism is caused by the syndrome and not just a behavioral issue as it is with some children. She also wants to run an MRI to see if anything is structurally wrong with Edda’s brain, so we scheduled that for mid-next month because she’ll need a pediatric anesthesiologist to administer general anesthesia because she’ll have to lie still for about 40 minutes and they only have the doctor go there on Tuesdays and the next 3 Tuesdays are booked. And yes, finally, for all those people curious enough, her disabilities weren’t caused by brain injury because of her fall that broke her leg. Whew!

Also, the neurologist was very helpful in telling us what we need to do in the US. She says that we should definitely see a pediatric neurologist and also get another genetic test done (Rett’s syndrome) and metabolic tests done. Metabolic tests could indicate that she’s missing a critical enzyme or something like that. These tests should be readily available in NYC, it’s just so rare that they don’t have the facilities to do it in SGP, they would have to send the samples overseas.This afternoon was spent going to a school that will take Edda and work with her on all the therapies for 3 hours a day or so. We are looking at a bunch of different schools for her before we decide. We’ll look at another on Saturday as well.Also, I have to say that I have a lot of sweet friends who look after Vince as Jeremy and I go around town with Edda. Today, Rukia, our housekeeper came by to clean our house and she went to Vince’s school to pick him up and take him to her house and he played with her daughter, Hazira (he loved her TV, of course). On Friday, Monday and Tuesday, we have more appointments and therapy, so my neighbor Helen will look after Vince and she still is refusing payment – she’s the lady who looked after Vince when we had to rush Edda to the hospital for her UTI and she took him to a party! And there is also Julia who is the wife of a coworker of Jeremy who helped out with connections to the American school and looking after Vince and there is the mom Tina who takes Vince to school at 8:30 so we can make our 9 am appointments. And, of course, there is Kate who calls me up and invites me over and makes me get out of my house. It’s really been wonderful…

Apartment

Mom finally found the apartment that she likes to stay. One bedroom with double entries to the single bath room. It is about $700 per month including everything except electricity, phone, washer and dryer. There is no panelty for breaking the lease due to business reasons. It is about 5 minutes drive from the work place. I will buy a sleeping sofa to sleep in the living room. This way, Mom will not be disturbed during the night. They are doing the background check and will let us know for sure tomorrow, hopefully.

The Knitting Olympics

Well, the Knitting Olympics starts in a few days, and I was going to make a cabled hat, but I decided it wasn’t challenging enough, so I switched over to these mittens worn by Hermione in the Harry Potter movies. I know I’m a few hours ahead of Turin and I’m not suppose to start knitting until the flame is lit, but I may take advantage of the time difference and start a little bit early.

Weekend Update…

As always, it seems like my weekends are packed these days.

Friday night, I went out to Waterdog park with Jason, Don and Brian. I just got my new Light & Motion ARC Li-ion lights. They are pretty much the new high intensty discharge lamps that you get on all the cars nowadays. It’s freakin’ bright. Had one on my helmet and one on the bars. I was going pretty damn fast cause I could like actually see the trail!

Saturday was work day. We’ve finally resolved the whole 24 hour mess. We have the green light to register. Ted’s also going to race for us. It’ll be fun (and lots of suffering). I also went ice skating for the first time since MIT. That was interesting. It’s been awhile since I’ve bladed too, but it wasn’t too bad. Can still skate backwards tho not very elegantly. There, I met one of Rich’s friend’s, Yong who had been going thru a similar career change like myself. He was working at Cingular for like 7 years, and decided to quit. He ended up working for a machine shop, and then over some bogus politico stuff, got canned. Right now he’s getting his teaching degree right now. Also, he’s a good skater since he plays hockey.

Sunday, I went out hiking with Anna. This is offcially our second date I suppose. We went out to the Stanford Dish, to walk along the trails there. It was cool. just a lot of chatting. I think I might be getting into better shape now since I wasn’t really huffing or puffing up the hills. We ended up having brunch at a cafe in California Ave. I paid. 😛 Incidentally, she drives a Bug.

Hrm. This whole dating after all your friends are married or hooked up is really interesting. I’m not sure what to do now. My standard mode of operation is to meet people thru friends – groups of people hanging doing whatever. You get a chance to hang out with them, see them interact with other people, get to see them interact with their friends. Then you can gauge them pretty well, and you get to spend time with them before committing to any action. In the more traditional dating, your personalities sort of exist in a vacuum, and the intention is out on the table there. But I suppose it’s how the world works when you get older. I’ll get used to it.

Of course sunday was super bowl sunday. I went to a church gathering where people didn’t really care very much about the game. Except for John Tang, who has been a die hard Steeler’s fan since childhood. He painted his face Black and Yellow even. Needless to say, he was pretty happy with the result, tho the game wasn’t really that great of a game. The commercials were only OK too.

It’s interesting hanging out in a group that know each other, and you’re the outsider. I notice in these groups that nobody really tries to get to know you at all. No questions are asked about who you are or what you enjoy doing or whatever. it all seems a bit superficial and fake in a way. Kind of sad I think for a group that supposedly touts openess, exchange and all that stuff.

Thank you, my SP!

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So, of course, after I wrote my post about my secret pal, I found in the mailbox today a lovely package! (I must apologize as I haven’t checked the mailbox in over a week – I hope it hadn’t been sitting there too long.)

Look at that sock yarn! Beautiful, I’ve never knitted with Regia before and the color is fantastic. And the edible treats and the bath soap, just perfect.

It’s been crazy around here. But I’m having a dandy time thinking of what I’m going to knit next. SOCKS!

Oh, secret pal, I love red too in my previous blog entry. I’m going to use the red yarn for a lace scarf, but first I had to buy some needles with a pointier tip because the Clover Bamboo ones I have just can’t pick up the laceweight yarn.

Thank you for thinking of me 🙂

Crazy day. Again. Can’t I ever have a normal day?

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So last night, Edda had a fever and we gave her some Tylenol and she went to bed. But at about 1 am, she woke up with a pretty high fever and was shaking, so Jeremy ran out and took her to a 24 hour clinic just down the street and the doctor there gave her a suppository to bring the fever down and something else to prevent the possibility of a seizure. She came home and slept well.

But all today, we gave her the Motrin and the Tylenol, but her fever always hovered around 103. She finally was in enough distress that we took her again to the 24 hour clinic and they told us to take her right to the hospital. So we took her back to our lovely Children’s Hospital. Luckily, I was able to snag my neighbor to take care of Vince. She was actually going to a Chinese New Year Party and said that it was fine to take Vince with her. We went to the hospital, spent a long time waiting for Edda to pee so they could do a urine test. (Picture is of Jeremy and Edda in the waiting room trying to get her to drink more water so she’ll pee.) Turns out she has a urinary tract infection. Poor girl!

Anyways, we got home, Vince came home as well- had a fabulous time riding in a car (he told Auntie, “I love cars”) and apparently he loves this beef noodle dish with gravy and didn’t want to come home. Edda after her antibiotics perked right up and feels so good, she’s still up at 11:00 pm.