Month: January 2007

So I’m still working on this (a gift from a secret pal):

I’m finally at the frilly border so maybe I’ll be done in a few months or so.

We had occupational therapy today. Vince and I sit in the waiting room for the first 30 minutes and he plays blocks and I play – “I wonder what sort of ailment all the kids in the waiting room have, ADD? Dyslexia? Cerebral Palsy? Anxiety issues? Hmmmm…” So many things to wonder about. I know the other moms are wondering the same about Edda who of the 3pm Friday afternoon group has the most visibly apparent issues.

Nice session with Yaiu Chi. Some hand over hand work. I wonder if Edda will be able to regain some hand use. It’s pretty far gone now, but I’m still hoping!

Oh, yes the pooping progress. Edda pooped in her potty today. Pretty cool.

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Scientific name: Ilex vomitoria
Common name: Yaupon holly
Location: Austin, TX

When we were going through all the diagnosis stuff with Edda, I did a lot of reading on different genetic disorders, some apparent at birth, some apparent when the kid is about 2 (like Rett) and others which don’t show up until later in life. Many are devastating and heartbreaking illnesses. I learned of a new genetic illness today, Batten’s Disease – which can strike kids when they are 5-8 years old when there is a regression in skills and is usually fatal by the time the child reaches their 20s. Anyhow, there is some good news regarding this disease (which like Rett involves the brain) and stem cell transplants. This is from a mom on the RETTNET forum, encouraging news!

A year ago, I wrote about Daniel, the son of a friend of ours who has Batten’s Disease which is terminal, and a particularly heart wrenching disease often starting out with normal development and then progressing to the point where a child becomes deaf, blind, losing all motor skills – unable to move and becoming bedbound before death. . He was on 60 Minutes and was the first child approved to have a neuronal stem cell transplant. It was first thought that he had Rett Syndrome. I complain a fair amount about Rett Syndrome and the impact it has on our daughter and our lives and feel sorry for myself, but life seems like a walk in the park compared to what they have been going through.

Anyway, as many of you know from the hundreds of articles in the newspaper and reports in the news media, Daniel had the stem cell transplant done in Oregon in October and returned home in December. His family had suffered through a excruciatingly difficult and painful year before the procedure. It is such a terrible disease with a devastating impact.

There is so much I could say, but the bottom line is that procedure went great! His parents are thrilled because at this point, not only has his regression stopped, but he has been making progress! He is speaking some words again, has more control over his neck and head, is regaining hand use and reaching out and grabbing things. He is much more responsive and interactive and his neurologist has removed the word “terminal” from his diagnosis. I just can’t put in words how exciting this is!

It’s incredible how far flung our immediate family members are right now! Here’s the breakdown:

Jeremy’s parents, Bob & Katherine – Eastern Europe
Jeremy’s sister, Louisa – Washington, DC
Jeremy’s brother, Ben – La Paz, Bolivia
Jeremy’s sister, Emily – NYC, USA
my dad, Noel – South Carolina, USA
my mom, Rena – Guangzhou, China
my brother, Donald – San Jose, CA, USA
us – Singapore

So we’ve got: North America (both coasts and the south), South America, Europe and Asia. We are on the move!

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I’m behind on my plant IDs.

Scientific name: Tillandsia recurvata
Common name: Ball moss

Location: Austin, TX

Yesterday was Ruby’s birthday. She turned 6 or 42 depending on whether you count in regular years or dog years. Can you see that she’s turning gray around the muzzle? Ruby was born in the back of a beat up old Volvo in Austin, TX 6 years ago. She has 4 brothers and sisters – there’s Rio, Zuni, Hoss, the black one who’s owner didn’t give him a name even a whole year later. Was there one more? I can’t remember. Anyhow, we gave Ruby a whole juicy steak to celebrate. She seemed pleased.

I hate Edda’s new haircut. It’s the first one done by a professional and we were so worried that Edda would flip out on the chair with the pointy scissors pointed at her eyeballs that we didn’t pay so much attention to the style. I’ve now tried for three days to like this hair cut and I can’t convince myself that it looks good. It’s a very Singaporean haircut – very wispy and full of fringe, it brings her cute factor down. Oh well, at least with hair it grows out.

Some photo’s from this weekend’s XC skiing trip to Yosemite.

I was not the only one to miss a series of piano lessons. Vince also missed weeks and weeks of his Yamaha group piano lessons. These group lessons have parent participation, Jeremy goes with him on Thursday nights after dinner. We signed him up last year and at first it was a lot of fun, lots of clapping, singing and rhythm. Vince loved it.

However, now the pieces involve all 5 fingers on the right hand and have rests and we are starting to have chords. It all happened so quickly (it seemed to me). We hadn’t really practiced earlier in the class because it was just for fun and it didn’t seem so serious. But now we are behind and it’s harder now, so there is no getting around practicing every day. It can be a struggle when Vince isn’t up for practicing. It’s hard to learn something new and he has to work at this to make his fingers do what he wants them to do.

Practicing music brings back lots of memories for both Jeremy and me. We both played musical instruments as kids and we both have memories about practicing or not practicing.

Mom made it safely to GEDI (Guangdong Electric Design Institute). She is in the office in Guangzhou, China. And I came back to Aiken, SC yesterday afternoon.

She will let me know the contact phone numbers and apartment address later.

We all went to the dog park this morning. It’s the rainy season now and the park has poor drainage. It was a swamp.

Jeremy and I went to eat Korean food for lunch. We couldn’t get a table until 2 pm so we were starving. The food was amazing! So amazing and so satisfying that we had a super light dinner.

I packed the car full of stuff and drove home on Friday. Today, I setup the bunkbed and Mahjon table. I also kept most of the glass bottles that Mom collected. I found out the bunkbed fit well and it also could be used as the storage area for 3 mattresses and some additional stuff. Good for the un-intentional usage.

Mom is the Hong Kong and will head to Quangzhou on Monday morning. I told to her several times over the phone already. She was fine and ready to be on her new job.

Tomorrow, I am going to drive back to Aiken, SC. I just have few things left. I keep cake mixer and baking utensiles and stuff. I like to bake cakes. I also keep a Chinese Wak for vegetable cooking. Well, I am progressing from one pot to other things – a progress for me indeed.

I also filled a bottle of Granddad’s rice wine. I am ready to take to Taiwan for the son of Mom
s brother. The wine has been with us for a long, long time. I tasted it, very delicious 🙂