Author: Doris

Vince and I arrived in New York about 24 hours ago. So far so good, although we off to a bit of a slow start. Vince has been very happy and having fun since we arrived. His fever and cough are getting better and he continues to cooperate with the medicine taking requirements. I now also have a bit of a cold and fever, although nothing serious. I hope it won’t last long. I have not left the house since we arrived yesterday. I slept like a rock last last night until about 1:30AM, and then fitfully after that. When Vince also got up at 4:30AM we just started our day. Today he lasted until about 5PM before collapsing in front of his favorite Blues Clues video and I expect he is down for the count (I hope he makes it to at least 4:30 again). I only made it until about noon and then slept until 5PM or so, so perhaps it will be another long night for me. Anyway my book is pretty interesting (The Omnivores Dilemma) , so I have something to do. I am not sure if I will make it to work tomorrow or not. Maybe it will be another day hanging around at home.

Without the chatterboxes here, the house is quiet. Edda, me and Ruby are all of very few words. We can have a dandy old time together for hours without saying anything to each other.

Almost all the folks with Rett Syndrome are non-verbal. Actually, a lot of the kids acquire words (one person from the internet support group mentioned that his daughter had a vocabulary of 300 words) before the regression hits at about 12-24 months and all verbal skills are lost. There is even a nickname for Rett girls – “Silent Angels” (which is a bit too sugary and morbid for me, since Edda really isn’t silent because she laughs and has vocalizations when she’s pissed, happy, angry, surprised and she isn’t an angel – because angels are in heaven and she isn’t there yet and she’s isn’t an earthly angel because she will butt in front of her brother for the TV and she will bite you until you bleed and she will drop herself like a dead weight in order for you to carry her while you are holding a huge bag of groceries – but you get the silent idea). Edda really never had any words – if she’s really mad and it’s bedtime, sometimes we will get an exasperated “MA!” but that is pretty much it. But these past few days, her teachers and her therapists swear that she is saying “apple” and “happy”. I have to say that I am skeptical about all this, I have pretty much given up any expectation of Edda ever having any verbal ability, but get this – I can hear those words too. It’s too early for me to call them words, I think I’ll just stick to calling them sounds that Edda likes to say and they happen to sound just like happy apple. (Wouldn’t it be so cool if Edda could talk? – I’d settle for just a handful of words… ahh, I’m getting all bleary-eyed thinking about it…)

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Common name: Geiger Tree
Scientific name: Cordia sebestena

Location: West Coast park

I just got a promotion and a raise. Great! It’s not a big deal really but I find it funny that I’m basically getting back the money I would have made at the bike shop – plus weekends free! Ha!

Yes. I squeaked out a win in Week 13, and now I sit atop our fantasy league with a 9-4 record and a total of 1915.02 points scored – 220 pts more than #2. Thank you Ladanian Tomlinson! Of course, it was getting ugly at the end, as the last 3 games i went 1-2 and scoring an average of 145 pts over that streak which a lot of points. The last game, which I needed to win, the score was 160-149. 149 was tha highest points scored in a losing effort this year. Why do people have to make it so stressful for me in the end?

So we enter the playoffs. Bye week clinched. Home field advantage clinched. I”m feeling good. I haven’t scored less that 133 points since week 5. We’ll see what happens.

Last night, Jeremy was so excited about flying today that he could sleep until 3 am. Vince’s illness was improving rapidly; so much that he woke up, took one look around and said, I’m OK! I can go to New York today! And so they went… I dropped off Edda at school and then dropped them off at the airport. Vince gave me a bunch of kisses and said that he’ll miss me and that I can write him and we can still be friends and that we’ll have dinner together when he comes back.

Edda seemed happy to have the TV all to herself, no one elbowing her out of the way, no one changing programs mid-cartoon. Smiling and happy. Ruby, on the other hand, seems bummed. She knows what packing means. She knows that we’ll be leaving for a while. Poor girl…

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Common name: Cat’s Whiskers
Scientific name: Orthosiphon aristatus

Location: near Edda’s school.

But your phone is busy or something’s wrong with the connection. Oh well.

Anyways, what’s your opinion on Flickr? The good? The bad?

So Vince and Jeremy didn’t make the noon flight out of here. Vince felt a bit weak today, but I think the fever is down and hopefully tonight will be a quiet night and tomorrow, they will be on their way.

Last night Jeremy and I were in bed and talking about the crazy year it has been. It was just about a year ago when we first suspected something was amiss. Was it the worst year ever? I guess one could say that. It was certainly not easy grappling with Edda’s Rett diagnosis. Edda’s life is very different from what I thought it was going to be when I first held her in my arms.

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Common name: Croton
Scientific name: Codiaeum variegatum

Location: Genesis school!

Ack, Vince started to run a fever today. I hope he doesn’t get sicker over the next 24 hours since he and Jeremy are set to leave Singapore tomorrow on a non-stop flight halfway around the world. Tylenol seems to control the fever quite well, so cross your fingers that he doesn’t get sicker. A sick kid trapped on a 17 hour flight is no fun for anyone.

I signed up to sing at a virtual christmas concert. Any suggestions for what to sing? Remember, I can’t really carry a tune, so something cute/sweet/funny – also something short would be nice too.

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Common name: Coral Tree
Scientific name: Erythrina crista-galli or fusca

Location: Choa Chu Kang Park

Well, I woke up around 10am. Not bad considering I went to bed at 4am. I got up. Did not shower. Did not put on any pants. Said good morning to my roommates. Revelled in not having to go to work today.

I cooked up some spicy sausage patties and had some Eggo waffles with butter and real Canadian maple syrup. Did some laundry. Cleaned my room. Cut my hair. Went outside and took some more photos while there was still sun outside.

Tonight, I’m going up to the city to watch a play called, “Doubt” with Ronnie. But it’s already been a great great day.

 

 

 

  

Mom brought back a lot of good stuff from Washington DC after Thanksgiving. Therefore, this week I was off of cooking, but still washed the dishes. Yesterday, when Mom had her colonoscopy done, I did manage to cook some vegetables and shrimps. Starting next week, cooking arrangement should be back to normal – I cook during weekdays and Mom cooks during weekends.