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…

One thought on “Edda and Jeremy ride the bus.”

  1. Glad to know that you can finally relax about the falling off the bed incident. Glad you also have a lot of people there that are willing to help you guys out!

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