Vince at Edda’s school.

Today Vince freaked out about going back to New York. He said that it is so much fun in Singapore that he never wants to leave. I think he’s a little wary about change. It’s all anticipatory, he doesn’t like it when thing are about to change, but once they are changing, it’s OK.

Vince participated in Edda’s class today. They were a little short staffed and I had to leave school to go to my piano lesson – I felt a bit bad leaving him there, but I left and came back as soon as I could. One of my great pleasures is to see Vince make friends with Edda’s classmates, it’s nice to see. Another great pleasure is to see Vince make a huge mess with paint somewhere other than my own house because I hate paint!




Common name: Powderpuff plant
Scientific name: Calliandra emarginata

Location: Choa Chu Kang Park

West coast park field trip.

Vince and I were invited on a field trip today. Edda and her school went to West Coast Park to have fun and games! NJC of Singapore was having a CIP, so a lot of young people were around organizing games and entertainment for the kids.

We were sweltering in the heat and I forgot to pack sunscreen & water. Sigh.


Now Edda has really figured out that when she taps something, she is asking for whatever she is tapping and I usually get it for her. So today, I was at the Quick-E-Mart at the gas station and Edda kept tapping on a bottle of Coke. I looked at her and then I said, No Coke, Edda – sorry kiddo. So then she looked at me and walked straight to the stack of beer and started tapping a six-pack of Tiger. I looked at her wearily and said, No Beer, Edda – sorry kiddo.



Common name: Traveler’s Palm
Scientific name: Ravenala madagascariensis

Location: Lot 1 Shopper’s Mall.


Okay. Like something is seriously wrong with my left leg. I can barely lift the damn thing past 20 degrees. I think I strained a the tendon that connects my hip to my femur, and by God, it doesn’t make climbing any easier.

Went to the gym for class tonight. I was on a V2 and I totally would have gotten it except for a stupid move that required me to lift my left foot, frog style, to a hold a little off my left hip. Aw. But I couldn’t do it! Grumble.

Looks like I’ll just have to take it easy on that side… sigh.

Oh, and to top it off… I forgot a t-shirt tonight, and I had to climb in a nice Calvin Klein short sleeve button down. Grrr!



There are huge mango trees right outside Edda’s school. Usually, they fall to the ground when they are ripe and feral chickens come by and eat them. But today, we saw some brave souls up on ladders and plucking mangoes out of the tree and we got to get some!


Hopefully they will be ripe in a little while. They are hard as a rock now..


Vince and N. from Edda’s school like each other. It’s really cute to see and everyone teases Vince about it. N. can’t speak, but they manage to communicate their affection for each other. Usually, N. slaps Vince and then grabs his ear and he generally allows her to do it without complaining too much. Ah, true love.



Common name: Cannonball Tree
Scientific name: Couroupita guianensis

Location: West Coast Park!

Rett Syndrome Resources – Testing

Except for the EKG, these tests do not need to be done every year, and not
every individual with RS will need them. I have amended the list below.

Long QT (EKG)at diagnosis and every 2-3 years if normal

Spinal X-ray – scoliosis survey in supine position (not sitting). Straight
as can be made. Baseline should be done at age4-5, followed by repeat
X-rays as recommended by an orthopedist.

Video EEG to establish events as seizures. Do not treat EEG, only treat
seizures. Frequency on recommendation by neurologist.

Reflux (pH Probe, Swallow Study, Endoscopy) – if there is irritability,
screaming, self-abusive behavior, coughing/choking/gagging while eating,
vomiting, discharge on pillow in the am, excessive swallowing or drooling,
refusal to eat, weight loss.

Gallbladder (Ultrasound, CCK with contrast) — if there is unexplained gut
pain, moaning, especially after eating

Swallowing study– if aspiration or reflux are suspected, when there are
repeated pulmonary infections, choking/coughing/gagging while eating

Upper GI series — to rule outreflux and delayed gastric emptying

Gyn Exam and abdominal Ultra Sound for ovarian issues after puberty.

Third post.

Sorry for posting so many times in one evening, but I just wanted to say that Edda told us that she was hungry and wanted to eat tofu without just screaming her head off. She walked over to the wall of pictures and tapped on the tofu picture and then walked into the kitchen and did it 2 or 3 times before I realized that she was serious about asking for the tofu! She had a nice satisfied look on her face while she was chowing down on her soy product!