Patches

I just took off the patch today, because the nausea was getting to the point where I couldn't ignore it and was causing me stress. I don't need stress. On the plus side, I finished my first draft of my children's book for the New Voices Award. I have no clue if they want a story about a Burmese kid, but they're getting one this year.

At Little T CCS OT apt, his OT talked about cutting back to appointments once a month once he learns how to walk, because Little T has "motor planning skills, good cognitive ability and bright eyes." However she did say I should ask to have his speech evaluated, so I can get it a baseline. It's interesting to see how different OTs view Little T. As I blogged the other day, his Stanford OT thinks he lacks motor planning in speech. I tend to agree with the CCS therapist. We'll see. It scares and excites me to see less of CCS. CCS tends to see a lot of kids with cerebal palsy and also needs to save money. We'll see how it goes.

Hybrid wars, junk food wars and giant squid war

According to the Washington Post, smaller cars are flying off the lots, though it doesn't separate hybrid from non-hybrid cars. All I know is everywhere I look around here I see Priuses. The Economist calls the Prius ugly, but I find it strangely beautiful. I blogged about my Prius envy.

Honda came out with a Honda Hybrid Accord
so Toyota's fighting back with a Toyota Hybrid Camry next year. Unfortunately it's not being produced in Fremont. But where's the Toyota hybrid mini-van supposedly coming in 2007 according to Hybrid cars.com . No-where in sight. It will probably depend on how the Prius and Camry sell. I guess the universe is telling me we don't need actually need one.

Sometimes I think I should move back to England when I read headlines like: Junk food to be banned in schools Of course I suppose the kids could sneak off campus and buy food outside, but it's a lot harder and takes exercise and ingenuity.

And last but not least, the Washington Post reports the first images of a giant squid. It seems they were pretty cruel to the poor creature to capture the image and in the end the creature lost one of its limbs. CNN has a video. At the end of the video, the scientist blithely says the squid is in no danger of dying from losing its tentacle and yet at the beginning of the video, they said they know very little about the giant squid. Typical arrogance of scientists. I hope the big squid is okay and can still capture its prey.

Stress and thankfulness

I read this headline Pregnancy stress passed to baby and my first thought was "Great! Another thing for pregnant moms to be stressed about." On the other hand, "Stress does not cut IVF success" and I had always thought that stress did affect fertility so perhaps the pregnancy study was flawed in some way. The sample size of 74 is very small.

I realised one thing that stresses me is when I think I'm going to have some time to myself and I don't get that time. Special K went to preschool this morning and a respite care worker was supposed to show up to take care of Little T. I was going to work on my children's book and my non-fiction book. I did actually manage to work on both while Special K and Little T played. Mobility is a marvelous thing. Now Little T can entertain himself for fifteen minutes at a time. It's very freeing. However Little T hasn't quite figured out how big and bulky his head is. He keep bonking his head on things and crying. He bonks his head on different things each time, and he doesn't even really hurt himself. It's more that he gets stuck and is annoyed. It's stressful for both of us. I know he needs to learn, but I wish learning didn't have to be so literally painful.

I should also mention that I no longer have a Sims child. I have a mostly potty-trained child. On good days, I do nothing, except occasionally walk with her to the bathroom. On bad days, well, I'm sure you can guess what happens then. Today was a bad day. That was also stressful.

On the plus side, I had time to feel stressed today. And my stress stemmed from ordinary problems of motherhood. Right now I'm watching Little T eat a saltine and scoot on his butt on the floor. And try to figure out how to eat and scoot at the same time. He's mostly mushing up the saltine. He says "gah" and sprays crackers out of his mouth. I feel grateful that he can move around now and get cracker crumbs everywhere, that he has an interest in getting cracker crumbs everywhere. He smiles at me and holds up his cracker and my heart melts.

NICU Grad party, Costco, Speech Therapy & the "no" theory of child development

Yesterday we all went to the NICU grad party. The neonatologists are so personable. We saw twins that were Little T's neighbours in the NICU. It was amazing to see how far one had come. The other...well it's not my story to tell. It made me remember how lucky we are in how far Little T has come. Special K loved the petting zoo and dancing on the stage with the guitar player and other kids.

I've been trying to find long-sleeved clothes for Little T that snap up the front and was being to despair. I went to every kids store around and found nothing, except one yellow one that was too ugly. I did find one outfit online, but it was depressing to order the same outfit 10 times. I even emailed my local mother's club, but one person responded and had 3 outfits.

C said "Maybe Costco will save us" and it did finally today. Today I went to Costco and I found just the clothes Little T needs. Hooray! I also bought Special K a plush tiger costume for Halloween.

At his OT apt, his Occupational Therapist said that she felt that Little T should be evaluated by a speech therapist. Oddly I had just stopped worrying about his speech development. He's apparently still delayed. He's supposed to say 1-3 words and maybe he says "Hi" but it's kinda a stretch. However I was worried when all he said was "gah". Now he actually babbles and he babbles all the time. I think he will start talking soon. But I think he's more interested in figuring how to move about better first. Already he's improved his scooting technique. I see him trying to pull up on things, but not actually doing it.

His OT says he may have some motor planning deficiencies and it's different for oral-motor than for gross motor. It's clear from his PH probe Houdini act that he has no difficulties in gross and fine motor planning. I just think he hasn't quite figured out the advantages of talking.

When Special K was 11 months old, she had a great breakthrough in communication. At that point, she said "mama", "dada" and "meh", which was milk. We went to an art gallery and Special K pointed to some food and said "meh". Then we went to the grocery story and she pointed to some food there and said "meh". After that her vocabulary and her talking took off. Little T says "Hi" to get our attention and to be cute, but he definitely doesn't seem to realise that he himself can communicate with us.

Maybe it has to do with being mobile and saying no. I told our OT that Little T got told "no" very little until last week. The only reason we told him no was when he pulled his sister's hair. So he doesn't even really understand no. When a child isn't mobile, there's no real reason to tell him no most of the time. I talk to him all the time, but I guess he doesn't need to understand what I say. But now sometimes he must understand what I say. "No climbing on the stereo." "No eating cat food." This is turning into a sad theory of child development. What do you think?

Evening out

C and I went to Bambuddha Lounge in SF last night. It describes itself as a "hot spot" which usually means it's too cool for us. It serves fusion Asian cuisine, but it was delicious. And it had an amusing mixture of forced retro and Asian stuff that I think of as SF culture. Outside was a drive-in motel which was still painted in the retro 70's colours, but had fresh paint and electronic doors. Arranged outside were funky sculptures and a bamboo garden with black and bright colours. We didn't sit outside, because it was a bit chilly and we also didn't have dyed hair.

I didn't dye my hair in my youth. I never regretted the decision, because I'd have to bleach my hair to do it and I wouldn't want to abuse my hair that much. BTW the only colour I'd want would be purple. I'm still deciding if I want to dye my hair now that I'm older and it's turning white. It's a nice silver white, so I feel lucky.

There was a live DJ, but no-one was in the DJ area. Some Asians lounged outside wearing Mardi gras beads with cups. A few with purple and red hair. They all looked cool and cold.

We had the fastest service we've had in a while before an opera, so we made in plenty of time before Girl From Algiers started. In many ways, the opera seems similar to the restaurant with a silly fusion of cultures. It's a silly opera, though unlike the restaurant it has an underlying seriousness and patriotism. I thought William Burden as Lindero was particularly touching. I was a little annoyed, because even though we have season tickets, we got the second billing stars for this opera: Isabella and Mustafa. And I found Isabella to be second rate. C found her funny, but I found her voice to have a slight burr in it, which grated on me. Mustafa had great antics, but his voice wasn't as robust as I would expect for the part.

However the set was wonderful with a great 20's storybook Indiana Jones feel with some good playacting to counterbalance the repetition of the silly phrases. Sometimes particularly SF opera goes overboard with the playacting, and you miss the words of the opera, but I think this production had the right balance. They let the singer sing the phrase the first couple of times and then start buffooning.

Actually William Burden transported me. Sometimes I think to myself, going to the opera is such a PITA. It's expensive. It costs a lot of time and money. Sure I get to go out with C, but I could walk with C to a restaurant downtown. But when I listened to William Burden singing about missing his love, I was transported back to a time when I missed my long distance loves. Okay it was better than that since they were never perfect operatic lovers. So we had a wonderful evening. Unfortunately the opera was almost 3 hours long, so I was too tired to drop by my brother's birthday party. But I did think of my brother while I was at the Bambuddha Lounge. Because he would have enjoyed the place.

Mysteries of growing and mobility

Special K has sudddenly grown again. First I noticed that she was a head taller than her two friends at gym. Then I noticed her pants that used to brush the tops of her sandals are now above her ankles. Also the sandles I bought her at the beginning of the summmer are a little snug. Special K seems mystified too as she keeps putting on clothes that are too small for her. When I was a kid, I used to grow without my noticing. In fact I'm not quite sure how I grew from 5'5 to 5'8.

C and I went to our first opera of the season The Girl from Algiers. I have more to say on our evening, but I now have a completely mobile baby. Oh, my! As I was typing this, Little T managed to scoot on his little butt all the way over to the bathroom. I'm so excited for our kids to reach each milestone and then afterwards I remember what a pain it is to deal with.

Shakespeare meme

Taken from theferrett, post a Shakespeare quote in your blog. "The fool doth think he is wise, but the wise man knows himself to be a fool".

Vertigo, stress and children's picture book

Since taking Topamax, I haven't had vertigo for days. But today I have vertigo and nausea. Joy. I guess I do have migraines or something and it's related to my cycle. I think I'm stressed. Or rather things are going better, so my body is no longer bathed in stress hormones, so it feels worse. I hope that makes sense. I'm not sure how seriously to take my symptoms.

But I feel I must take a moment to pay proper homage to my poor body, which took horrendous abuse almost a year ago. I literally couldn't walk for over six weeks after somehow pushing Little T out. I think it's a minor miracle that I've somehow emerged relatively unscathed. So I veer between not wanting to whine and wanting to make sure that I'm not in fact missing something lurking. When my OB did the ultrasound of my uterus, she mentioned there was fluid under my intestines that might be uncomfortable. Whatever the hell that means. I forgot about it until now.

I also realised that I'm not as good as I thought at identifying when I'm stressed, so I'm writing some of the less obvious signs here

• Forgetting important things like Little T's numerous apts
  
• Feeling doomed
• Crying about "touching moments" on tv for people I don't even care about
  
• Getting frustrated with Special K about things she does all the time like dawdle
  

This too shall pass, I keep telling myself. I get more Buddhist as I get older. The idea of impermanence. I can't hold onto anything.

And so I write. I started writing another children's picture book. I never saw myself as children's picture book writer, but I heard about this contest. I had another idea, so I'm writing another children's picture book. I'm still waiting to hear about my first one.

It turns out this publisher is also a potential publisher for my first book, so that's a good thing if the publisher I submitted the manuscript to doesn't work out. I should have submitted a query letter instead. Ahh, well. Live and learn. I feel I've already learned a lot so far. I'm sure I have a lot more to learn. What an adventure life is!

Library class, poo, and the ups and downs of motherhood

I took Special K to a class at the library yesterday and it was a bust. She got bored, and wouldn't do anything except sit on my lap. I was feeling a bit bad at her lack of interest until I realised she was bored.

The class is for three-year olds which covers a broad range of abilities. Special K is an "older three", because her birthday is in late April. So she already knows her letters, colours, numbers and parts of the body. The class just covers these concepts. I was feeling pretty pleased that she knows these concepts and was about to blog about it when I heard Little T crying.

He had pooed and managed to smear poo across our white carpet, his clothes and his left hand. Pretty good for someone who can't even really use his left hand. Ahh, the joys of having a mobile baby. But when I opened his diaper, I discovered an unexpected delight. And I mean this sincerely. His poo was mostly yellow. For a few months, his poo resembled this green sludge like you might find at the bottom of a cesspool. Not sure if it was due to the antibiotics, Prilosec, or what, but it was not normal. Finally it's starting to approach normal.

Oprah had a show about health in which a prominent doctor said to inspect your poo every day as an indicator of health. In Little T's case, I think his poo is an indicator of health. And actually many people who have babies watch their babies' poo carefully for this reason.

For adults, your poo should come out in big pieces (3 or more inches long), be an S-shape, or you need more water and/or fiber in your diet. You should also poo at least once a day.

I'm Obi-Wan Kenobi

I just took another silly sci fi quiz and ended up as Obi-Wan Kenobi. The last time I took a Sci-fi character quiz, I ended up as Yoda. I'm not even a big Star Wars fan anymore. I haven't watched the last two Star Wars films, though I did dress as Princess Leia for Halloween in my youth. If it amuses you, feel free to speculate why I keep coming up as a Jedi knight in silly scifi quizzes.

Little T is off all meds and he can eat

For the first time since he was born a year ago, Little T is off all medications and even supplements! He was even taken off Poly-vi-sol yesterday. I'm so proud of him.

Perhaps related, since we took him off Prilosec, he suddenly started eating solid foods like a normal 1 year old. He grabs little bits of food and puts them into his mouth, then he takes a small bite and swallows it. He pulls out the food, then starts over again. He doesn't gag or throw up anymore. He hasn't thrown up once since we stopped Prilosec. Well except when Special K climbed into his crib and gave him a plastic letter which he tried to eat.

He still eats very little, but we're all just stunned. Just three weeks ago, we thought he'd still need months of feeding therapy. After a couple months of therapy, he could put a Cheerio in his mouth and mash it down, but when he tried to swallow it, he'd gag and then vomit. Now he can eat bits of chicken, strawberry, whatever he can lay his hands on. He swallows it down and it stays down.

And I just realised he has a pincer grasp. How exciting!

Email, meme and blog synchronicity

Owlmoose has a meme about posting a poem in your journal and Cindy a friend from high school sent me email asking me if I'd read One Art by Elizabeth Bishop. So I read the poem just now. The poem begins with losing little things, which I blogged about on Sunday. I hate it and find troubling more than I'd like. Therefore the poem didn't quite resonate with me. Since it was predicated on losing things to be commonplace and untroubling. But still I enjoyed reading it. And I enjoyed the synchronicity of three.

Email down, please resend

If you've sent me email since Friday, and you don't receive a response in the next few days, please resend your email. My email has been down off and on since Friday. It's supposed to all get through eventually, but after an email outage, it doesn't always.

20 Facts about me

This is a meme that I got from owlmoose. I'll try to provide facts that aren't on my web page or in my journal

1. I loved to stare at punk rockers on the bus in Chelsea, London where I spent my early childhood.
2. The first story I ever wrote was about meeting Mother Teresa in Calcutta.
3. C and I come from mirror universe families. I'm the eldest girl of girl boy girl. C is the eldest boy of boy girl boy.
   
4. Bee* and me don't get along. I'm allergic to bees to the point where I keep an epipen. When I eat beef, I literally throw up. I also hate beets and beer.
5. I have had season tickets to the opera since 1995.
6. I had a horrible crush on Mr. Spock from Star Trek when I was twelve.
7. I'm not afraid of heights. I'm afraid of jumping. I'm not suicidal in any way, but when I look off a bridge or any tall building, I feel like jumping off. Sometimes I dream I jump off buildings and I start to fly.
8. My favourite numbers are 13 and 42. 13 because it seems witchy to me and 42 because it's the answer to life the universe and everything.
   
9. My maternal grandfather was a Burmese diplomat before the military junta took over.
10. I've travelled all over Europe, North and South America, and parts of Asia, but I've never been to Africa, Australia, or Antarctica. I've always wanted to go on a safari and to the Great Barrier Reef. And I will when we can travel again. I'm not sure about Antarctica.
11. My mother forced me to take piano lessons as a child and I hardly ever practiced. As as result, I can sight-read pretty well, but I'm an awful piano player.
12. I prefer to play computer games with someone else. I don't mind "watching" if I can kibbitz. In fact it's usually easier for me since a lot of games are frustrating for me to play with my movement disorder. Not that I have time to play many games these days.
13. If you judge favourite movie by number of times most watched, then it's Casablanca. Otherwise I think it varies. And see below.
    
14. Other than a few memorable movies like Casablanca, I tend to forget the plot and dialogue of most movies a few years after I've seen them. C finds this shocking. I think it's great. I get to see a movie over again and it's like new.
15. I've been misnamed a variety of names in my time, but the best name I was ever mistakenly called was Athena in college. I didn't correct her and it took her months to figure out my proper name.
16. I like tea tastings and drinking fine tea on occasion, but every morning I drink Tetley tea. It's comfort food for me.
17. My favourite colour is purple.
18. Before I had kids, I used to think vomit was the grossest thing. Now I'm pretty blase about it.
19. I have hyperflexible ankles which is supposed to be related to my myoclonic dystonia, so I've sprained both ankles a lot. I've reduced the number of sprains in recent years by doing ankle exercises after each sprain.
    
20. I was asked to be Water on a MUSH, just because someone wanted me to be part of four elements. Then later I discovered one of the meanings of my name Thida is Water.

That was harder than I thought it would be.

Little T delivers to a deadline and has a dramatic party

On Friday Little T had his one year checkup. His ped was impressed by how far he's come. He now weighs 18lb 7oz, which puts him on the growth charts! My son's in the third percentile. I never thought I'd be proud to say those words. :) He's only 26.5 inches long, so still below the charts. But his head is still the 50th percentile at 18.25".

Little T delivers to a deadline and to an audience. On Saturday he pulled up for the first time in front of adoring fans at his party including his hematologist. He also actually waved for the first time too. He used to raise his right arm in the air once, then drop it back down. It was one wave. But not waves. Now he waves...sometimes.

We all really enjoyed his birthday party which had 20 people. We tried to keep the guest list down, but it keep ballooning. We're at the stage of life where you can't invite one person, because they often have an SO and child/ren. I used to have large parties where I invited everyone I knew, which was fun, but now I have to do mummy things as well as hostess things. And twenty was about all I could handle.

Or maybe it was the amount of unexpected drama. A friend showed up for literally about ten minutes to give me her news which included she was getting a divorce. Then Sonya and Roberta arrived late and Robert had a lot of cuts on his face. The poor things had gotten into a car accident on their way down here. No-one was seriously hurt, but the air bag had deployed in Robert's face and scratched him up pretty badly. We had two doctors at the party and tons of medical supplies. But it turned out that washing the cuts and applying antibiotic ointment was all that was necessary.

Sunday was much quieter. C and the kids went to the farmers' market as usual. C bought some moon cakes and we ate them in the light of the full moon for the Chinese Moon Festival. We'll prolly make it a family tradition every year.

Tired and little bits of financial paper

I'm very tired. For the past several nights I've been waking up at 3 or 4 in the morning. I feel hot and bothered about something. It's something different each time. It's trivial, but I feel this tightness in my chest and I can't get back to sleep. I toss and turn. I go to the bathroom. I try to think more productive happy thoughts. I wonder "What's wrong with me?" At some point I fall back asleep again.

This is very odd for me. Usually I fall asleep and sleep soundly until morning. Only severe stress combined with the feeling that I can fix it causes me to lose sleep. And my life is relatively stress-free. My sister says maybe it's because things are settling down so now I have the capacity to feel stress. I guess that could be true.

I went off Topamax since a known side-effect is insomnia. So far it's made no difference.

Lack of sleep makes me forgetful and I lose little unimportant things like the coupon for $12 off Little's T cake. I know it's only money, but I hate the feeling that I can't control this bit of paper. That it's slipped away somewhere. I search for it and I can't find it. We got the cake anyway, but I still want it. I hate bits of paper. I want a world where my finances are not tied to them. I've tried to free myself from them as much as possible, but it's an impossible dream. My tenant sends me a rent check every month -- a little bit of paper. I've never lost that, though once it never arrived. And once before C and I merged finances, her payment came every month completely electronically. It was my idea of financial heaven.

I want to write more about Little T and his party and his checkup, but first I have to go to another party. And right now I'll let go of the idea of finding this coupon, this bit of paper. I feel it drifting it away skyward to wherever little lost bits of paper go. Bon voyage.

Happy Birthday Little T

Dear Little T
Today you're one year old and this is the public portion of my letter to you, which I hope you'll read when you're older.

Knowing you brings such joy in our lives. Right now you're sitting next to your sister. Your hand is on her knee. You're gazing into her eyes and cooing at her.

Yesterday your sister suddenly kissed you and said "You're the best brother ever." I think you're the best son ever. Before I had kids, I didn't know that a baby could express love, but you do everyday. When you gaze into my eyes and reach out and gently touch my face, I know you're expressing love.

I love how you gaze at me intently with your eyes shining brightly as if I was the most fascinating person in the world. Perhaps I am to you, at least at that moment.

You laugh everyday. You even laugh in the ER. You laugh at your favourite joke. You pretend to put your binky in someone's mouth. You laugh, because just yesterday you learned to scoot.

You've had a very difficult year, Little T. The gods willing, it will be the most difficult year of your life. You've spent a fifth of your short life in the hospital. I won't lie to you. You almost died several times. But I really admire you Little T. You struggle so hard not just to live, but to thrive. Though I do complain about your eating, you've overcome great odds to be as healthy as you are today. People, even doctors look at you and marvel at how far you've come. I really don't know anyone who remains as steadfastly cheerful in the face of adversity as you. Yet you also scream loud and long if you don't like something and you believe something can be done about it. It's a unique combination.

Daddy and I had to make a lot of decisions for you this year. I wish we could have asked you what you wanted. I think we understand your spirit somewhat and we tried to do the best we could. I hope our decisions turned out to be the right ones. Time will tell. But we always did what we thought was right for you at the time even if it was personally painful for us. I even wrote a personal essay "His Tube Ate My Boob" in part about the feeding choices we made for you that I really struggled with.

I don't know what the future may hold you for, Little T. I hope we get to spend many more years with you. But whatever happens, even with its heartaches and medical horrors, this year with you was a treasure and gift to us. Now that we know you, we'd always choose you, because you are our most beloved best baby brother and son.

More on our shopping trip and Little T inches along

Now that the exhaustion has faded a little. I can recount more. First, Special K got lost at Toy R Us for about a minute. A minute where I had plenty of time to envision all sorts of horrifying scenarios. I called her and called her and she didn't answer. I found her standing next to one of those song kiosks."Why didn't you answer?" She replied matter of factly, "I was listening to songs."

But as if to reward me for scaring me so, she gave an unexpected delight at Trader Joe's. Trader Joe's shopping carts and in fact most shopping carts have room for only one child. At Trader Joe's, Little T rides in the front in his car seat while Special K likes to ride in the shopping cart itself. It's a balancing act to load items around her without crushing her or crushing the items. Yesterday she suddenly stood up in the shopping cart and declared "[Little T] is the best baby brother ever" and gave him a big kiss on the cheek".

And today Little T inched along to another milestone literally. He scooted about three feet on his butt and right arm. He moves in a most peculiar way. He starts from a sitting position then leans his stomach and his right arm all the way over like he's going to crawl. His left arm remains behind his back, which hinder his progress somewhat. But the main problem is he doesn't lift his butt more than an inch off the ground, so he only moves a few inches. Then he moves himself back to a sitting position. He takes a break then starts again. As you can imagine, it's very hard work, but getting to Mummy was a great incentive. I'm sure he'll soon figure out a more efficient way of moving even with his non-functional left arm.

A trunk, shopping and bolus

Today was not a good day. It wasn't a bad day. A bad day on the Thida scale of bad days involves a trip to the ER or hospital. No, this was a day filled with mild annoyances and simple pleasures. It began with our nanny calling in sick, because she caught a cold from Little T.

We had a brief interlude of calm where we all snuggled on the bed. Then I realised that Little T's jumpsuit was in fact now jodphurs coming to knee length. He needs to go into twelve month clothes. I don't have even backup girly long sleeved 12 month stuff since Special K was in summer clothes at that point.

A kind friend had given me hand-me-down clothes sorted by size (bless her) for Little T. C had just shoved them into a trunk "to get them out of the way". They ranged in size from newborn to 4T. So this morning I could no longer put off going through the clothes to find something for Little T. It was either that, or a trip to Target. And my inate sense of cheapness forbade that. It turned out to be an expected pleasure as well as annoyance as my friend loves sailing and has a lot of cute nautical outfits. Plus it brought back memories of my friend. A favourite was going to see elephant seals with her and her family. Many of the outfits we couldn't use because they were too small and had to pulled over the head. Little T can't raise his left arm over his head. So I have a big stack of clothes to give away. I'll have to ask my friend what to do with them.

Just as I was done, I realised it was time for Special K's gynmastics. I hadn't left enough transition time for Special K. So it was "Just five more minutes" from Special K and fuss and worry from me, but somehow we managed to make it to gym on time. And Special K had a lovely time at gymnastics with Sylvia and Josie. Little T babbled and babbled and watched everything intently. He also smiled and flirted with everyone who passed by.

Then we went shopping at Toys R Us and Trader Joe's and Special K peed in the car seat, which was incredibly messy and smelly. Both kids were very good otherwise, but it was filled with petty annoyances like someone stopped abruptly in front of me in the parking lot. Maybe that's when Special K peed. And somehow it took hours. Though we started at 11:30, we didn't get home until 3.

And even though Little T had not had any food all day except a tiny bit of banana and a little bit of cereal, he refused to drink anything when we got back. So I gave him a bolus feed of 4oz down the tube.

As I was unhooking him, I stepped on the pump pole leg and cut my foot. But perhaps my blood sacrifice was not in vain. So far he's managed to keep it down, though he's had the dry heaves a few times. We took him off Prilosec for the PH probe and he actually seems to vomit less, so we've kept him off it.

I forgot to mention yesterday that he gained a little weight up to 8125 g and grew 67.3 cm. It's good that he's still growing, but he's not catching up. He's just maintaining a curve and the curve is still below the 3rd percentile. I don't care so much about that. What I do care about is that he's losing a lot of his baby fat and a year is a little young for that. So I see more bolus feeds in his future. We go to GI clinic on Monday, and we'll investigate more why my boy has no appetite. And for some reason, this reminds me of the Silly Sisters Song "My husband has no courage in him". I feel a filk coming on.

PH probe & my little Houdini

The word probe always conjures images of aliens with mind sucking probes and this probe didn't suck his mind, but it did go down his nose and record the level of acid in his esophagus for 24 hours. Our ped had said we could do the same for Special K when she was an infant to see whether to treat her reflux, but we refused on the grounds it was too invasive. Sadly, for little T, it was just another procedure and a minor annoyance at that.

He had an NG feeding tube down his nose and throat for months, but it was replaced by a feeding tube in his stomach a couple months ago. So yesterday at first he seemed perplexed that a tube was placed down his throat again. Then he remembered to be annoyed, but his protest was loud, but half-hearted. He yelled, but no flood of tears. Though of course he tried to remove it.

In an attempt to prevent little tube ripper from removing the probe, we put a splint over his arm. If he can't bend his arm at the elbow, he can't reach his face to remove the tube. He tried to remove the splint. He managed to remove the splint despite the fact that his right arm couldn't bend at the elbow and his left arm doesn't work. First he slipped it off using his legs. So we fastened the splint with a pacifier clip. He figured out how to wiggle free of the pacifier clip. We moved the clip to his back. Then we used tape and the clip. This arms race continued day and night throughout the 24 hours until finally the ph probe was removed this morning.

I'm sad we had to put in a mic-key feeding tube, but this little battle with the ph probe certainly shows we did the right thing. There's no way a feeding tube down his nose would last the night with his new found dexterity. It also shows that whatever gross motor delays our little boy has, he has adaptive problem solving skills i.e. he's wily like Bart Simpson.

I'm not sure if the ph probe will show much either, because he had a good day with the probe. He only throw up once and it was a minor incidence. Still I guess that's good, because perhaps part of his extreme lack of appetite is too much Prilosec. We'll see what the doctors say. In any case, I'm proud of my little Houdini.

Also my kids love to prove me wrong. I've been telling his therapists that I'm worried because Little T can't eat solids and that Little T doesn't say any consonants and he's started saying dah and bah and kah. He's also started eating solid foods without immediately throwing up afterwards. Go Little T

Blanket Sunday, Storytime Monday and baby friends

On Sunday we went to a birthday party for twins that were born on the same day as Little T. It was the first time in a long time that we had a party on blankets where all the children were on blankets except Special K and the older sibling and another child who arrived to wait the birth of his younger sibling. Little T had a fabulous time smiling and "talking" to the other babies and banging his hand against the blankets.

We put him on the ground with the twins' nursing pillow in case he fell over and both twins crawled over to him. He said "hi". It does literally sound like hi. I guess that counts as his one word. It would have been interesting to see what happened next. Unfortunately both twins started crying, so they had to be removed. Ahh, well.

Yesterday I took both kids to Storytime Monday. Last time it was an unqualified disaster as my nanny (not the one I have now) fell asleep and Little T hated it. This time Little T enjoyed listening to the story. He also enjoyed grabbing the socks of another almost 1 year old and trying to grab the parachute. Special K love running around with her friends. We'll definitely try to go again next week.

I feel bad, because a year has slipped by and Little T has no friends his own age, and I didn't even really notice the lack. Special K already had several friends. Some child experts say children can't make friends at this age. yada yada. Nonesense, I say. You only have to see how Special K used to light up when she saw her friends, still does in fact and how they would crawl up to each other. I'm not really sure how or when I'd have made these friends for Little T, especially since for large parts of the year, he couldn't be in contact with other babies and seeing healthy babies filled me with envy, so it's not really that. And I suppose that's it. I guess I did think about it fleetingly back at the beginning, but I realised it wasn't possible. I do have this capacity to simply put things out of my mind, which is different from letting go, which I'm bad at. But we'll see if I can move making friends for Little T on my long to-do list for him next year.

Ned and Arnie

I didn't know that my friend Ned Spofford was over 70. He writes poetry.

I also forgot to mention that I got my start on my emergency supply kit from Arnold Schwarzenegger and Safeway. Back in the summer, Safeway was offering subsidised kits under the auspices of the Red Cross. The kit was in a red backpack with a list of suggested additional supplies and photo of Maria Shriver. After all, it'd be good to see her face in an emergency.

James Frey Writing Workshop

I signed up for a writing workshop with James Frey in Berkeley October 28/29.

He wrote How to Write a Damn Good Novel and a sequel How to Write a Damn Good Novel II. I found the latter one of the most useful and entertaining how-to books on novel writing.

My fellow writer and BMC alum Gina attends every year. She has wonderful things to say about him. If you want to know more, please feel free to email me.

I hope those of you who are writers can join me.

Details are here.

Happy Birthday C

Today is C's 39th birthday. I hope he has many more years left in him. Lots of love.

Supplies for an emergency

Even before Katrina hit, I stockpiled a few supplies in case of an emergency. I have some water, army field rations, a battery powered/solar powered radio, first-aid kit, blankets, etc. And today C sent me this article that gets one thing right in that it should be in one place that you can take it and run. But it actually suggests less supplies than I have, and doesn't suggest basic necessities like say a mylar blanket. And alarmingly suggests stupid and dangerous things like a gun (if you already know how to shoot).

But don't worry. I'm not getting a gun. Movement disorders and guns don't mix. Besides I'm wirey and scrappy when cornered as kids in the school yard discovered when they tried to pick on me.

I also think the advice on keeping documents nearby is a little strange. It seems a little post-apocalyptic that all traces of my documents would be gone since copies of our documents are scattered throughout the world, but perhaps the article was geared towards a more provincial audience.

OB apt and the gods laugh

First of all, whoever spins the web of my life has a keen sense of irony, because my OB apt was bumped due to an emergency C-section. I should have had an emergency C-section with Little T. Instead he got stuck instead my birth canal and had to be turned which was excruciating and life-threatening for both of us.

I felt my cervix yesterday and it just felt horribly wrong. Instead of a nice slightly open C-shape, it's a droopy udder with weird bumpy bits. It was ripped to shreds when Little T got stuck there. Now blood gets stuck there when I have my period and it hurts like hell. I feel like my cervix will never hold together to have another kid. It can barely hold together towards the end of my cycle. I feel like my uterus is going to fall out. Not that I want another kid. We'd already decided on two before Little T was born. I put off going to the OB, because I thought I didn't want to go and be told that I was now infertile, and I had that choice taken away from me. Then I read a diary entry from Mary Anne and I realised that I wasn't going to make things better by hiding, so I finally made an apt.

And the good news is the gods had a good laugh, because at least on the ultrasound and on physical exam my uterus and cervix appear fine. There are no polyps, no masses. There are a few small cysts on my ovaries but those are pretty much par for the course for me. My CBC was normal, but the hormone work hadn't come back yet. I guess that could still be screwy. I talked with my OB frankly about my feelings and that something isn't right down there. Trauma about sums it up.

She suggested the patch for the heavy painful periods. It comes in a space-age pouch with a little dancer on it. It amuses me.

After going to the OB, I realised I actually didn't want to hear I could get pregnant again. One of my biggest fears is another accidental pregnancy. Now part of me says "well you didn't do badly with accidental pregnancy, which produced a healthy child Special K, whereas my charted and obssessed-over pregnancy produced Little T a medically fragile child. Even so another accidental pregnancy scares the beejezus out of me. Okay another pregnancy and baby does.

I still feel my wyrd is to have three kids. Maybe one of them won't be a bio-kid, but it doesn't really matter, because most of me thinks I'm insane to contemplate another child since Little T is about four children in himself. I really don't have a desire to have a third child. I just always thought I'd have three kids until Special K was born and I'm a case proof that birth control isn't 100% effective. Hence it's my wyrd.

So I'm relieved and confused, and I'm going to try the patch after my period. And I feel lucky to have choices.

How Writers can help Hurricane Katrina

An email from Jim Frey

In addition to the important work being done by the American Red Cross and other relief agencies, there are a number of special efforts we thought writers might be particularly interested in:

• The Katrina Literary Collective has been created to collect and distribute books to victims of the hurricane. For more information, contact the Amber Communications Group at amberbk@aol.com.
• A Louisiana Disaster Relief Fund has been established to receive monetary donations to assist libraries in Southeastern Louisiana at the American Library Association
• The American Booksellers Association has created a Bookseller Relief Fund to assist independent booksellers affected by Hurricane Katrina.
• The Southern Arts Federation has set up an Emergency Relief Fund to assist arts organizations and artists in those Gulf Communities most devastated by Katrina.
  

Aged friends?

Age prejudice 'ubiquitous in UK' - I was particularly struck by the quote "One key point is that a half of all people under the age of 24 have no friends over 70, and vice versa. And the data shows that those without intergenerational friendships are also more likely to hold negative beliefs about the competence of people over 70." Do you have any friends over the age of 70? I used to, but sadly they all died, except for one Ned Spofford. Time to make some new friends.

Brains, Blindness, Chimpanzees, Particle Physics and Mad Cows

If you live in the UK, please donate your brain to science...after you're dead of course and presumably no longer using it. Your brain could really help fight debilitating brain diseases. They actually need healthy brains more than diseased brains.

Porn makes you blind but just for a few seconds.


Smoking makes you blind and it's for life. It's so sad how they find more and more how bad smoking is for you. Of course my granddad smoked until he was 90.

I read this fascinating article in the Economist that the chimpanzee gene has been completely sequenced. It turns out that the genomes "differ by only 1.2% over the course of some 3 billion pairs" I had always thought we were 98% similar, but it turns out we're actually 98.8% similar. Wow. "There are no immediately obvious genes—present in one, but not the other—that account for such characteristic human attributes as intelligence or even hairlessness. And while there is a gene connected with language, known as FOXP2, it had already been discovered." The article points out "it may be that many of the crucial differences are not in the genes themselves, but in how and when the messages those genes carry are transcribed and translated into the protein molecules that do the work in cells—and thus, ultimately, determine what an organism looks like and how it behaves." Even so, it was humbling to read and as the article rightly points out, chimpanzees used to be classified as Homo troglodytes and that's how I think of them.

I also enjoyed reading this article on how particle physics makes things magnetic which ended "So, next time you have an MRI scan, remember that part of the picture depends on something that isn't really there. Strange, eh?"

Sad to read this article about how mad cow disease might be caused by humans infecting cows, you have to pay, so I can't quote from it either, but the upshot is that human waste from the Ganges was collected by bone collectors in India and was then fed to cows in Britain. The Economist admits it's far fetched. Even so, it confirms my dislike for beef. Dunno what I'm allergic to in beef, but maybe it's humans brains....

And last and definitely least, Ipod releases a shiny new cell phone Now I need to wait for the combo cell phone/Ipod/Palm/camera. Shiny happy/music playing/camera/pda that runs out of batteries in minutes.

More outrage about Katrina & China & same sex marriage

Much of my news about Katrina comes from frumiousb who's an American Mawrter now living in Holland. Her post is locked due to content unrelated to Katrina.

I'm very outraged. We pay billions of dollars a year for troops and helicopters and ships. Why aren't they descending on NO to help our own people in their time of need?

An excellent series of lj posts from a nurse in a hospital in NO.
In one post, she asks for some clothing and towels and a pillow for herself. It's rather pathetic.

Bush appointed a weak manager to FEMA, because he was busy fighting wars and dealing with Homeland Security and now it's come to bite him hard with these series of awful headlines: FEMA sent fire crews...to hand out flyers, FEMA sent help only after the storm was over, Offers of aid have been held up in FEMA red tape

Or maybe he just lives in the same world as his mother: Barbara Bush Calls Evacuees Better Off

Or perhaps Bush just read these uplifting stories about heroes in NO in CounterPunch.org that I never heard of until Frumiousb linked to it.

Here's one I found from the BBC: Online gamers lend a hand

And keeping with my pledge to also report on international affairs, here's some outrage about China, Yahoo puts a Chinese dissident in jail

Last but certainly not least, Jed has an excellent post about the Same sex marriage act in California. If you're in California, please go here and follow his instructions.

Little T's hand apt and choices

I cried on the way home from Little T's hand apt, because the hand surgeon told me that Little T's left arm probably wouldn't improve much. I wasn't going to cry. I was going to just tough it out. Then I thought to myself "If I were my friend, would I think it was okay to cry?" So I cried. Not as much as I thought I would. I didn't have any particular dreams for his arm as such.

It did really hurt to hear that part of the cause might be brachioplexus. I'm still letting go the small voice that blames me for not making the horrible OB do an ultrasound on Little T's entire body and not just his head. When I was admitted, the nurse examined me and probably felt his arm and asked for an u/s to see where his head was. The OB on duty very snidely agreed and just waved the wand briefly over his head. I had a fleeting desire to ask to see the entire body, but it seemed silly at the time, so I didn't ask. If she had, she would have seen his huge left arm, and we'd have both been spared an incredibly traumatic birth. Even if she had no, I'd have felt less regret, because I'd have done every possible thing I could. I so rarely regret speaking up and asking for what I want, but there it is.

And that reminds me of my uncle's question "How do you cope with all this?". He asked me as we were sitting at the reception of my brother's wedding, which no doubt influenced my answer: We have some choices in life, but a lot of our choices come as part of a package deal. I didn't grow up in the richest country in the world, but I choose to stay here. I chose C to be my husband. I'm happy with those decisions. Even knowing what I know now, I wouldn't want to choose someone else. I choose the entire package.

And I didn't choose that horrible OB and probably she'd have just made fun of me for asking to see the entire body and refused. I went to the hospital in labour, but not active labour, and my water had been broken for just two hours. It was also my second birth and with my first, my sack had not broken until almost when Special K was born. Even so, the OB insisted that she give me pitocin. I equally insistently refused. I said I'd go into active labour on my own. I was right. And pitocin might well have killed Little T. So I got the big thing right. She got angry with me and that clouded her judgement. I think she labelled me as a "difficult patient" and ignored her nurse who noticed something was wrong.

For some reason, the hand surgeon asked if I wanted to have another. We have thought about it. He said "It's not hereditary." I know that. And unlike perhaps many able-bodied parents, I never had the dream of the perfect child. And I still wonder if Little T might not also have my movement disorder as well. Special K doesn't appear to. I just don't know if we can handle Little T and Special K and a third child. We were thinking two kids before Little T was born anyway. But never say never.

And I realised it's so much his arm that bothers me. It's other people treating him badly. I mostly want to spare Little T a painful childhood. Because I know what it's like to be teased mercilessly because you have a disability. But at least I can provide him a soft place to land. I already know he's a very strong person and there's just something about him that attracts people, charisma if you will. I think if we can get him through all these hospitalizations in one whole piece and that's still an if in my mind, he'll be okay.

Searing BBC editorial & how to help victims of Katrina

I read this searing BBC Op-ed that begins:"The only difference between the chaos of New Orleans and a Third World disaster operation, he said, was that a foreign dictator would have responded better." Well also writes "If journalists were there with cameras beaming the suffering live across America, where were the officers and troops?" It's rather harsh, but it is true that suffering could have been averted with better planning. Wells writes about the levees but the real culprit is the devastation of the wetlands which allow flooding to take place.

If you want to help, you donate to Second Harvest, which according to Charity Navigator, and Forbes is a more efficient charity, but smaller charity than the Red Cross. Of course you can also donate to the Red Cross and specify Katrina relief fund. You can also donate to various Live Journal people who will donate to various charities. Shadesong compiled a list here.

It's sad when a hurricane shows our broken country

I just saw the Oprah show so I decided to update this post. She showed the SuperDome and it looked just awful full of disease and germs. People described children raped as they went to the bathroom. It sounds unbelievable. Bodies rot on the sidewalks. They talked about gangs ruling the streets. I really don't understand if these are isolated incidents and the people reported them to get on the Oprah show, or it was widespread. Either way it reflects badly on New Orleans.

Being the Oprah show, it was also a celebrity fest with various celebrities doing good. I'm glad Oprah is part of the movement to make it fashionable for celebrities to do good. I miss Diana Princess of Wales today. She'd be there, smiling and handing out flowers. Ah, well.

The people on the Oprah show questioned if the government would have responded better if the people were richer. I question if Bush would have responded better if New Orleans had voted Republican.

The Economist hardly a bastion of environmentalism places the blame for much of the damage in New Orleans on the destruction of wetlands around New Orleans instead on Bush who IMO also shares the blame. I believe that if we don't take care of the earth, then it won't take care of us. We are still creatures part of the ecosystem of the earth. Though scientists can't yet prove any causal links between these recent disasters and global warming, I think they're all linked.

Frumiousb linked to an article about why people didn't leave:Living Paycheck to Paycheck Made Leaving Impossible - But I still didn't get it. I mean the warning was given a couple days before the hurricane. So they could just walk out, but then I talked to C who supplied the missing piece: They probably didn't take the warning seriously which is understandable, because hurricanes are unpredictable. They didn't want to leave their stuff and take the chance that the hurricane wouldn't be that bad and have their stuff stolen, or worse be stuck in the open with their elderly and infirm.

From Kynn, I learned The Red Cross wasn't allowed in NO at first They are now. It's clear the National Guard is stretched too thin, so it can't help the people in New Orleans like it should and so the Red Cross couldn't help at first.

C showed me this NY Times OP ed about the contempt of Bush for FEMA which contributed to the tragedy includin "the U.S.S. Bataan, equipped with six operating rooms, hundreds of hospital beds and the ability to produce 100,000 gallons of fresh water a day, has been sitting off the Gulf Coast since last Monday - without patients."

Starbucks responds

As I blogged earlier, I sent an email to Starbucks, I include the response below. My Catbert translation: Our PR campaign is working. This blogger has advertised for Starbucks. We are very pleased.

But I am also pleased that as a side benefit it supports the lesbigay community. Hooray!

Dear Thida,

Thank you for contacting Starbucks Coffee Company. We sincerely appreciate your comments about our efforts to support diversity.

As a Company, we are deeply committed to our Mission Statement and Guiding Principles. One of our six principles is "embracing diversity as an essential component to the way we do business." This includes the gay and lesbian community.

Starbucks has a long history of giving back to communities where we operate. We strive to support organizations that are important to our partners (employees) and customers.

Again, thank you for contacting Starbucks Coffee Company.

Sincerely,

Jessa M.

Starbucks Customer Relations

Misc links about brains

Parasites brainwash grasshoppers into death dive - Shows that depression and suicide (at least in grasshoppers) can have a strong biochemical cause

Autism has multiple genetic types - I could have told you that. :) My movement disorder myclonic dystonia has multiple genetic types. The only type identified so far responds to alcohol. Mine doesn't. "Good thing too." says my dad.

Two brainy scifi memes taken from HelenSchappell


And it figures I'm Janeway, because she's based on Katherine Hepburn who went to my alma mater Bryn Mawr.

My brother's wedding

After spending hours and even days talking to people, casting an invocation and giving a speech at my brother's wedding, I'm tired and even a little dizzy.

His wedding ceremony was in the "meadow" really sea grasses at Asilomar in Monterey. The day of the rehearsal was overcast and gray and beastly cold, but the sun shone brightly on the wedding day and even in sleeveless silk tops we bridesmaids were warm. Of course the bride was beautiful. It was lovely to see all my English relatives, but unfortunately we were incredibly tired, and it was a three-day affair. And after the first day we were already exhausted.

Special K ran around delighted and smiling and occasionally collapsed into a few meltdowns, because she stayed up until midnight and took no naps. She loved playing with her cousins and wandering up on stage during the speeches. When my uncle asked if anyone knew of any reason why the couple could not be lawfully wed, Special K said loudly "I want to be loud!". While the bride's family and friends were singing during the service, Special K and some of her little cousins sang "Twinkle Twinkle Little Star" a little distance away. Little T laughed and smiled as long as we were holding him and cried if someone else held him or he was in the car. He tweaked a lot of noses over the weekend.

Coffee morning

I'm normally a tea drinker, but I've already drank 1 and a bit of coffee today. I need it. I'm incredibly tired, but I did get some sun as I went with the bride and the other bridesmaids to choose flowers. I sat on a bench and gazed at the hills. I drank coffee and I chatted. I wandered through a corn maze that smelled delicious and ambled along a chamomile labyrinth that was surprisingly relaxing. I'm ready to read an invocation for my brother's wedding later this afternoon.

Special K was literally jumping up and down on the sofa cushions at midnight while I was falling asleep on the sofa at Misha's after rehearsal party. Of course there's a reception and then there's an after reception party too. Off for a walk on the beach then a nap if the kids let me.

Which Dyke to Watch out for?

You scored as Sparrow. You are Sparrow! You've been distracted from your usual spiritual pursuits by work and family. Get your hubby to babysit one night a week while you study Buddhist meditation at the local sangha.

Which Dyke to Watch Out For Are You?
created with QuizFarm.com

I'm amused that I'm Sparrow as she was the only Asian American character for a long time. When I met Alison Bechdel briefly once, I complained about this. Problem is she is the character that I'm most like. Ah, well.

I feel like Sparrow today. Frayed at the edges. I'm all stressed about my brother's wedding and packing. We have so much stuff to pack for Little T and most of it is not stuff we can just buy at a local drugstore. It accentuates the fear that underlines my stress in packing that I'll forget something and we won't be able to buy a replacement.

Mobile phones don't cause cancer, laser keyboard & a plea

Mobile phones don't cause cancer - Phew! My cell-talking friends and I can all rest easier now.

My friend akienm blogged about this Virtual Laser bluetooth keyboard for your Treo. That's really cool! And great for disabled folks like me who have trouble using the writing pads and small keyboards on PDAs.

Treos are now also available on pay-as-go plans. I'm pretty close to buying one, except I can't really justify the expense right now. I just need a book tour or something. Treo gods of the universe, hear my plea! :)

Special K starts preschool again

Special K started preschool again today with "Preschool Orientation". It's a shorter day and the parent/s attend too. We were late and saw Special K's old teachers on our way in, which was lovely, but a little confusing for Special K.

Her new classroom is the largest of the five and has 28 kids. Her old classroom had 24, but also had 4 teachers. She already knows one of the teachers. And the teacher talked about her to another parent. "X loves art. I hope other kids will too." said this parent. "Oh, yes" said the teacher "Special K loves art." Indeed she does. Though her art at home primarily consists of cutting paper, cardboard, feathers, felt, and anything else I let her cut into tiny bits.

Special K clung to me at first, but at snacktime she happily walked away outside while the parents stayed inside for the parent orientation. A few other kids came back crying, but not Special K. Later she wanted me to sit with her on the "grass" while she poured fake rocks into my hand. I had to explain to her the grass was fake, because she wanted to pluck it.

The parent who originally recommend this preschool to us has her younger child in the same class and she specifically asked for this classroom. Her older child was in for two years in a row. Like Special K, I still miss our old class. The teachers there was so warm and friendly. They provided an oasis for Little K with the chaos and drama of Little T's hospitalizations. It makes me teary just thinking about it. The new teachers are less polished and needed notes for the orientation. But I'm sure we'll both get used to it.

Business cards, Christmas cards and my bundle of joy

I just got my business cards made for free (shipping $5.25) at Vistaprint. No more ripping off bits of paper to give people my contact info.

National Geographic sent me Christmas cards. Hello? It's September 1. I know the stores are already filled with Halloween costumes. So can we at least celebrate that first?

According to usps.com, my little bundle of joy arrived safely. Perhaps it wasn't the wisest idea to send it just before Labour Day, but it's done now.