Still sick and playing World of Warcraft

Sorry for the silence. Christmas was somewhat stressful, but it's over now. We're still all sick. I'm in danger of developing a sinus infection, so I've been getting steamed four times a day at the suggestion of my doctor. You pour boiling water into a bowl, stick your face over the bowl, cover your head with a towel and then breathe in the steam for five minutes. He also told me about Mucinex. I didn't know they had time-release tussin. It's improved my life a great deal. I originally went to the doctor to get cough medicine with codeine, but I ended up only needing it one night so far.

C plays World of Warcraft with a hunter character. Special K and I watch. Special K likes the hunter's pet bear and killing the animals. Special K says "You can make different faces and dress them up." i.e. play different characters, usually dwarves or gnomes, little people. She kills lots of animals. She makes them jump and dance. She also enjoys making the hunter jump and run around in circles. She finds new and interesting ways to get the hunter killed like running the hunter into the loch and getting eaten by the loch ness monster. I like the hunter, because she lives off the land skinning animals. C likes exploring the world and solving problems that don't involve work or Little T.

Sick and stressed

Little T runs snot like a river, and seems clingy but does not seem worryingly sick. We're keeping a close eye on him. C and Special K both still have coughs. I still have a cold that seems to have settled into my sinuses which hurt. I've completed my Christmas shopping which was not stressful, but my overall stress level has not significantly gone down. Christmas this year holds a few things that could cause a lot of stress. Really not what I need. I usually really enjoy Christmas. I still hold out hope I can relax and enjoy Christmas this year. Ahh well the days are getting longer. We have a cleaner house. I did relax a little this morning in the sunshine.

Elliptical exercise

Little T's platelets dipped slightly to 93 today, but we're starting to slowly wean him off steroids. The steroids have made him gain weight, now at 9922 grams, which finally puts him on the growth chart at just above the 5th percentile. He also grew 3 whole cm after a month of no growth. He's now 71cm almost 28 inches. He's the complete opposite body type of his sister who's tall and skinny.

I had a brain wave yesterday about how to get me to exercise: buy an elliptical machine. Then I can exercise while the kids watch tv or rouster about. I need to do weight bearing exercise to relieve stress, increase bone mass for my bordeline osteopinia, and so I can live to at least 100. C can't decide if it's a crazy or a wonderful idea. The machine will just about fit in our bedroom if we move furniture about and get rid of a chest of drawers.

I see two other alternatives for exercise:
1)pushing the stroller around. It's hard work with two heavy kids, and hard to get myself to do it. It's also very hard on my wrists.

2) take a class or go to a gym. Unfortunately Little T can't go to childcare at the gym due to being immunocompromised. And he'll probably be medically fragile for months, so I can't count on any solution which involves him going into the gym daycare. I could cut into the childcare time I have currently to exercise, but that leaves me less time to shop, run errands, write, shower, etc. Keep in mind that Little T is not supposed to taken out to public places.

I confess I've taken him to the library once or twice when Special K was going stir crazy and I got desperate. It's a large public place and he can stay in his stroller. As long as no-one touches, him or breathes on him, and he touches nothing outside the stroller, it's okay. But I have to bring hand sanitizer with me. Inevitably Little T wants to be picked up while I'm carrying a stack of books. So I have to ditch the books in the stroller, quickly sanitize my hands, and pick him up before he starts screaming. I guess I do get exercise in strange ways, but not for 30 minutes straight.

Star Trek: New Voyages

I'm surprised I didn't learn about this before, but I haven't read much buzz about Star Trek New Voyages

You download it off the Internet for free, so it's a true labor of love. The sounds and music of the original Star Trek are reproduced faithfully and the same characters are portrayed by different actors who act in the same style as the original series as well. I waffle whether I find this charming or annoying. The special effects rival a decent video game. Gene's Rodenberry's son has given this effort his seal of approval during the filming of the second episode, so it carries the Star Trek name.

I watched "In Harm's Way", the second episode of two. The first episode was their pilot. This episode is a flying cowboy episode with lots of shooting spaceships and tricky maneuvers. Kirk doesn't get a girl. My favourite episodes were when Spock gets the girl. However the episode featured twists and turns, solid problem solving from Spock and the usual death defying stunts from Kirk. Unfortunately the writing suffered somewhat from what I call "fanboy syndrome". It required a detailed understanding of the episodes "Doomsday Machine" and "The City on the Edge of Forever". I had seen both episodes years ago, but I'd forgotten the details, so I was quite lost until C explained things to me. So if you don't remember these episodes, I recommend watching them beforehand or reading an episode summary.

It did make me appreciate how hard it must be to write tv scripts. I never get lost watching Star Trek episodes. Somehow they remind me of backstory without hitting me over the head too much, or losing me.

However the next episode due in 2006 was written by DC Fontana who wrote several scripts for the original Star Trek and several books. And I expect it will be fun and interesting.

I encourage any and all Star Trek fans to download the episode, or at least visit the site. I truly think it's a worthy effort and represents what I love best about the Internet.
Live Long and Prosper!

TV my drug of choice

I confess tv is my drug of choice when life is stressful. When things are bad with Little T, I watch a lot of tv. In the hospital, at home holding him being human pillow. When life gets too overwhelming and talking about it just won't help, I watch tv.

As drugs go, it's wonderful. It lets you forget about life for a while. It relaxes you. It produces a trance like state similar to that found in a good narcotic. Then you can turn the damn thing off,and except for having wasted some time, there are no side effects. And you might even learn something.

The righteous parents who decry how tv rots children's brains must have forgotten how much tv they watched as kids. The studies that show kids IQs dropping or speech delays with a few hours of tv a week seem extremely flawed to me. They are often based on self-reported data. Sure if you sit your child in front of the tv all damn day, their brain will rot. Not necessarily because of the tv watching, but because kids need stimulation besides tv. Or maybe the parents of kids with problems sit them in front of tv because they don't know what else to do with them. These parents will probably not admit in a survey that their child watches tv all day. Instead they'll respond a few hours a week like the rest of us.

Both my children watch tv as part of a balanced diet of activities. Special K also eats candy as part of a balanced diet of food. I feel sorry for those kids who never get to watch tv. I regard them the same as the child who never got to eat candy growing up. She was always sneaking candy, because it was this forbidden treat. Once your kids go to school, you can not escape tv or candy, so you may as well teach your kids to be responsible consumers.

Booster seat dilemma

Little T has finally grown out of his infant car seat. C and I debated whether to graduate Special K to a booster seat. She weighs just over 30lb and is about 38 inches tall, so she just about qualifies for the Britax Parkway. It costs $89 while a car seat costs $230. Special K has more freedom to move around in a booster seat. However a booster seat is easier to install wrong and can be less safe.

In the end we decided to buy the booster seat and use it as the spare car seat. Our nanny uses this seat to take Special K to gym and for occasional other trips. Right now our spare car seat is a Britax Roundabout. We'll put Little T in the Roundabout. By the time Little T grows out of the Roundabout, we should be comfortable having Special K in a booster seat full-time.

It amazes me how stressed out I got making this decision. I'm the parent banned from a group of mothers for letting Special K eat sand. Yet I got scared when I read sites that "Children should be get in harness restraints as long as possible." and "children under 4 should not ride in booster seats." Also two years ago our car was rear-ended by two cars in a car pileup. Special K was just under 1. WS and I both had back injuries that required treatment while Special K escaped unharmed.

Little T at 15 months

Little T platelets continue their slow climb upwards now to 100 and his fibrogen was 130.

His weight jumped up to 9531. I think he gained a lot of water, thanks to the steroids. His cheeks are as round as a chipmunk's, and his arms and legs seem pudgy, but are actually more puffy when you take a closer look. He's so short at 27" and he doesn't walk, so he can be mistaken for a younger baby. I sometimes get weird looks when I say how old he is. He turned 15 months yesterday.

Little T inspires me to keep plugging away at my book. I'm primarily revising the first three chapters, and I've had little time to myself this week due to various medical apts, and Special K's cough, so I've fallen behind on my quota. I also haven't had good sleep for two nights in a row. Last night Special K lay in our bed coughing. The night before I ate something that disagreed with me and I stayed up half the night worrying about things I normally just put out of my mind since worrying about them does no good and just adds to the number of things I have to keep track of.

I wish so much for my kids, but I can't will them to health. It's amazing how much sleep affects my ability to deal with stress. And how when Special K cries because she's coughing, it still breaks my heart, even though Little T has endured so much more without a whimper. And I'm too keyed up to take a nap. I'm eating chocolate in an effort to improve my mood.

First Non-fiction book

35,063 / 80,000 (43.8%)

Tags:
special_k
little_t
medical
writing

Milestones meeting

We reviewed Little T's goals on Tuesday. Little T exceeds expectations in all areas of review. He's made remarkable progress, considering he's been hospitalised five times during the review period (six months) Yes, Little T has goals written down on paper that the state government (Early Start) pays to have met. It's all written on our IFSP (Individual Family Service Plan), because every government program must have an acronynm.

When we completed this IFSP on 5/13/05, Little T literally just lay there. Five months of chemo had ravaged his body. He couldn't lift his head. He made no sounds. He gazed at you with bright intelligent eyes, but no-one but his family and a few doctors and nurses who knew him well had any indication he was anything other than "delayed".

A lot of the goals are devised in conjunction with the child development specialists, and like any speciality they have a syntax all their own.

For those who want to see your tax dollars at work, need to fill out an ISFP, or are just curious about Little T's progress, here are the details.

Outcome: Language Skills: [Little T] will say two to three words - met!
Criteria:

Little T will

• increase vocalizations, babble in response to parents interacting with their own voices. [sic] - met
• use "mama/dada" specifically - Sadly, no. He babbles "dadadada" and "mamamamama" and sometimes I think he might be calling me, but I've never heard him say "mama"
• wave or respond to bye-bye. - met
  

Outcome: Gross Motor Skills: LT will be mobile without assistance - met!
Criteria: Little T will

• demonstrate improved head control in all positions, turning head freely from side to side. - met
  
• play on stomach, bearing weight on right arm and left arm as able. - Needs improvement. His G-tube makes stomach play uncomfortable.
• roll from stomach to back and back to front - met
• maintain a sitting position using his arms to prop for balance as needed - met
• bear full weight on legs in supported standing - met
• with adult supervision, stand without adult support while holding onto or leaning on a small piece of furniture (couch or coffee table)- met

Outcome: Adaptive: Little T will feed himself enough so that he gets enough calories - Didn't meet goal at all, but did work towards goal. Feeding issues take a long time to resolve and the five hospitalizations set him back.

Criteria: Little T will

• Increase amount of feedings taken orally under supervision of physician. - Met. He now takes 8-10 oz a day up from 2-4 oz a day. Though to met his caloric needs he needs to take 32 oz a day.
• learn how to feed himself finger foods - met
• learn how to drink liquids by himself - met and just days before the ISFP meeting
• learn how to drink from an open cup - not met. He needed to meet the goal above first.

Thida will learn how to feed Little T solids. - met

Outcome: Little T will put objects in a container and take them out again. - met

Criteria: Little T will

• bring objects to midline and transfer them from hand to hand - not met
• work for a toy during play/retrieve an item using other materials - the first goal was met, but not the second
• uncover a hidden toy during play - met

Outcome: Little T will hold and manipulate an obiect with his left arm and hand. - not met

Criteria: Little T will

• move his left arm and hand voluntarily - not met -he can shrug his left shoulder and curl the fingers of his left hand, but that's about it.
• reach for an object with his left hand - not met
• grasp an object with his left hand - not met You can curl his left fingers around an object and make him hold something, but that's not really grasping an object.

The goals he didn't meet are continued on the new IFSP and he also has new goals for the next 6 months. The new language goals don't sound like English to me, because now he's getting speech therapy and his speech therapist outlined them. Actually, I'm not going to list the new goals. It feels like I'm pressuring him if I do. I know he can't read, but we can. In six months time, I'll report back how he's doing.

Minor milestone for Little T, major milestone for Mom

Little T has technically been able to hold his bottle for months, but on Tuesday he finally figured out how to tip his bottle, so he can actually drink from his bottle. Now yesterday he doesn't want me to hold his bottle anymore. Woo hoo! He can drink on his own. His OT has been pushing me to put him on a sippy cup. Now we can finally start.

Yesterday also for the first time I saw him move his left fingers in response to what his right fingers were doing. His right hand was grasping something and his left fingers also curled. Everyone is always amazed that his fingers can curl. He can now also shrug and rotate his shoulder.

Yet even as I present this latest marvel, each time various doctors tell us his arm will never gain any more function. He has missed several milestones like bending his elbow. Supposedly when he misses these milestones, it means he has missed the window of time for the neural pathways to develop. But he can't bend his elbow right now, because his tumor is in the way. He can't lift his arm much, because his arm is so heavy. Eventually he'll figure out that he can use his right arm to help his left arm.

I think the brain is more plastic than doctors realize. I just watched the "Secret Life of the Brain" where they showed how doctors can now train stroke patients to regain use of paralysed limbs. Much the problem is Little T doesn't realise what he can do and his arm is too heavy for us to easily move it for him. Once he's older and we can tell him, I believe he will fight to gain his left arm's full function. Right now he just has a dim awareness that his left arm and hand should do more. Sometimes he tugs on it and cries in frustration. He plays with his left hand sometimes. He likes to throw things with his right hand. I think he'll amaze the doctors by throwing a ball with his left hand. He's a tough little guy.

Spoons, the perfect radio station, Baby E

spoon story from Shadesong to describe folks who live with chronic illness or debilitating disabilities. When I was pregnant with Little T, when I was healing from Little T's traumatic birth, I guess I had fewer spoons. Though the analogy isn't quite fluid enough to really work for me personally. Ironically I'm too tired to think of a better one, except a battery though that's hardly original. Any thoughts?

I've been searching for a radio station that I can customize and actually works. That perfect match. Looking for a girl like you to come into my life, Pandora Maybe you're the one I've been searching for all my life! Thank you Neil Gaiman!

Julie produced this wonderful spoof of a Baby Einstein video. Even if you're not a parent, I think you'll find it funny.

Get your smut right here

Website from the SF Chronicle columnist Jon Carroll via C
Hey kids, go to the Creating Awareness of Education Standards web site, and read the smut in books that you are supposed to be protected from. Comes complete with a handy list of really dirty words in each book. Except that the site says that Shakespeare isn't dirty, because "Shakespeare's works contain neither a pervasive nor gratuitous amount of sex, violence, or vulgarity as do many of the other required reading assignments. For example, they do not teach our children about new types of sex (Song of Solomon which includes references to bestiality, necrophilia, and pedophilia."

So kids, if you want to read about bestiality, necrophilia and pedophilia with your parents's blessing, read Shakespeare. because these concerned parents say Shakespeare is smut free. The site says "most Blue Valley parents do not want their children required to read books featuring teens in sexually active roles" but Romeo and Juliet are classics. They contrast Shakespeare with "sexually stimulating and graphically vulgar content such as Beloved and Song of Solomon by Toni Morrison." So haul out your crib sheets and read some Shakespeare today!

And hey, if you don't want to bother with crib sheets, go and read Master and Commander where you can read about randy sailors rutting goats. Also on the Blue Valley concerned parents recommended list.

Remember kids, dead white guy writing=classic. Live black woman's writing=smut.

Four things meme

From Techne23 and luvmoose

FOUR JOBS YOU'VE HAD IN YOUR LIFE
-Enginering Manager
-Editor of Technical manuals
-Receptionist
-Salad maker at a fast food restaurant

FOUR MOVIES YOU COULD WATCH OVER AND OVER
-Labryinth
-Casablanca
-Sense and Sensibility
-Any documentary produced by David Attenborough

FOUR CITIES YOU'VE LIVED IN:
-Bangkok
-London
-Philadelphia
-Oakland

FOUR TV SHOWS YOU LOVE TO WATCH:
-The Daily Show
-The Sopranos
-Family Plots

FOUR PLACES YOU'VE BEEN ON VACATION:
-Burma(Myanmar)
-Turkey
-Peru
-Italy because doesn't everyone want to go?


FOUR WEBSITES YOU VISIT DAILY: (this is via RSS)
-blogspot.com
-livejournal.com
-neilgaiman.com
-bbc.co.uk

FOUR OF YOUR ALL-TIME FAVORITE RESTAURANTS: (revised after Sariuh reminded me about Chez Panisse and I realised the closing down curse tends to be from my parents)
Chez Panisse
this Japanese place in SF whose name I forget. Argh.
Le Trianon (closed down but my parents also liked it)
Paul K (maybe not all time favourite, but at least a favourite restauraunt I go to now)

FOUR OF YOUR FAVOURITE FOODS:
-tea
-chocolate
-cheese
-sushi

FOUR SCHOOLS YOU'VE ATTENDED
-Davis Senior High
-Saint Paul Girl's School
-Bryn Mawr College
-Haas Business School, UC Berkeley

FOUR PLACES I'D RATHER BE RIGHT NOW:
-with two healthy kids
-on my first book tour
-seeing Renee Fleming at the opera
-Rome

Year In Review Meme

Take the first line of the first entry from each month for the last year. (Gaked from luvmoose, owlmoose and madlori)

I didn't have any blog entries this year before May.

May: The Water owl is a rare strange bird, so I provide you with this field guide to the medical issues that form a background to her daily life.
June: Little T showed off his rolling at his OT apt.
July: I'm amazed at how much progress Little T has made with his legs.
August: It mentions sex, so be warned, if some reason, you don't want to be exposed to sex.
September: I'm amused that I'm Sparrow as she was the only Asian American character for a long time.
October: I think it actually says a lot more about the quiz makers than me.
November: Yesterday Little T seemed quite recovered from his illness.
December: I caught up with my writing quota and am now even a day ahead.

Conclusion: I've had a tumultuous year, hopefully one of the worst of my life, but you'd never know reading this. Bad stuff doesn't happen on the first entry of the first month, at least not this year.

Trader Joe's Peppermint Bark

I was also disappointed in Trader Joe's peppermint bark. I think I bought it before, and forgot it was disappointing. Now it's here in my blog, so I can read it again and save my money. Perhaps you can save yours. I paid $9.99 for 6 3x3" squares. Those are expensive squares. It comes in a big tin, so I guess that's part of where your money goes.

The white fudge tastes creamy and milky, but lacks any other particular flavour. That's okay. We're here for the chocolate. The dark fudge tastes rich velvety chocolate, made from decent chocolate liqueor. It's a good combination with the peppermint candy, which has a strong minty flavour. However for some reason the candy maker skimps on the peppermint candy, so it's quite unsatisfying as peppermint bark. It's actually just white-dark chocolate at a high price. I guess I could go and buy some peppermint candy, crush it and make it good, but at that price, it seems rather ridiculous.

I tried Ghiradelli peppermint bark at a party. The peppermint tasted strong and minty, but paled against the bland chocolate.

I know I bought peppermint bark somewhere and I loved it. It was expensive though, so I think I blocked it out of my mind. Where can I buy good peppermint bark? Why is it expensive?

C says I should blog about Trader Joe's food since I buy so much of it. Problem is that it changes all the time. But I do find that Trader Joe's food is very hit or miss. Some of their food is wonderful. And well, then there's the peppermint bark. Want to read more Trader Joe's food reviews? Tell me.

Running monologue

Special K has entered the running monologue stage of development. For example today she told me that my slippers were black, but they could be green like leaves a frog or red like a fire engine or brown like a bear. And many different things about the colours it could be. It went on for a couple minutes. I can't remember it all. Then as we were walking along to the library, she told me about climbing trees and how you need a long ladder to climb trees.

It's really pretty neat to see inside her mind. Though still sometimes when I ask her a question usually related to matters of time, she replies "I don't know the words." Time appears to be relatively fluid to her. A lot of things happen last year including things that happened yesterday.

Little T's platelets were 90 today and his fibronogen was 120. We were disappointed, because we hoped his platelets would be better instead of about the same as last week. We'll continue his steroids at the same dose and hope that next week will be better.

We go on Wednesday next week instead of Tuesday. The hematologists are going to a conference in Atlanta. I asked, "Don't doctors usually have conferences in more of a vacation destination?" Little T's hematologist answered "The conference was originally going to be held last week in New Orleans." Ouch.

Stretching

I spent some time today writing a letter to my insurance justifying physical therapy with UCSF instead of the local PT company who has no clue what to do with me and my myoclonic dystonia. I've not been nearly as good dealing with this issue as I have dealing with Little T's numerous medical issues.

With some nudging from C, I've gotten better at doing some of the exercises in the handout the PT gave me. The handout says to take an hour a day. I don't see that as attainable right now. I can manage 15 minutes twice a day. I also think it's more sustainable for me to repeat the same set of exercises twice a day. I'm supposed to be stretching and relaxing tense muscles. I find it difficult to learn new things. If I have too many things to remember, I focus on thinking rather than doing, and I jerk a lot more. So I'm continuing my ankle exercises until Dec 15 making it two months of exercises. And I just added exercises to stretch my neck, back and pectoral muscles and one exercise to stretch my arms.

Little T has stretched too. He's started cruising again. He lets me walk him holding his arms again.

I wrote more today, so my manuscript is now 30,764 words.

I also managed to prepare and roast a chicken. All in a productive day.

Yesterday I posted Special K's birth story.

Relationship models

I watched the Montel show on polyamory and it turned out to be surprisingly balanced and respectful. I thought a lot of the views that Montel voiced are simply what the average American thinks and feels. I thought it was interesting that Montel contrasted polyamory with the religious right's definition of relationships and said "by their standards we're all living wrong".

I did have one quibble which was that the people on the show were careful to say that they weren't advocating polyamory and of course the blurb made it out that they were saying it was "the best way". Neither am I. Polyamory works for some folks, but it requires a great deal of time and energy. If you read my blog for any length of time, you'll know I have very limited time and energy right now.

I just think it's important to talk about sex and love and your model for relationships with the person you're with. I don't think people talk enough about their assumptions. Basic assumptions like what constitutes sex and intimacy, whether or not to have kids, when to have kids, who will look after the kids, who will do chores, what's your basic spending patterns, attitudes towards money, etc. C and I talked a lot about these things before we got married and I attribute our basic level of happiness to our shared bedrock of common understanding and values.

Racism

Today I read two blogs about racism that I wanted to share with you.

First from frumiousb Zwarte Piet, a common image in Holland.


She blogs "Life in Holland as an expat just is not complete without Zwarte Piet. I still cringe every time that I see him-- particularly when I run across him unpacking boxes at the local supermarket. He was happy to stop and let me take his picture.

I find this image an appropriate one to be the patron saint of any discussion on integration and immigration in Europe."

Then from firecat via mizgeek from Alas, A Blog, I read this great description of privilege:
Privilege is Driving a Smooth Road and not even knowing it. In the comments to firecat, someone also quoted Jim Hightower about George W. Bush, "He was born on third base and decided that he'd hit a triple."

Caught up with my writing quota

I caught up with my writing quota and am now even a day ahead. I wrote about death. I think the research I've done so far is enough for now. I'd like first-hand verification from an actual mother before the book is actually published, because it's that sort of book. However I realised I don't have to have it right now for the book proposal. It's a proposal, not the finished book. That's a big weight off my mind.

29,724 / 80,000 (37.2%)

Slow

This week I didn't have any effective childcare until today. By effective, I mean childcare in which Little T wasn't crying and rushing over to me every half hour. While he's on steroids, only our nanny or the respite care people he knows can look after him without making him cry. While he may have problems talking, there's nothing wrong with the child's lungs.

I thought leaving home might work, but that utterly failed. His sitter called me and asked me to come home, because he was "suffering", because he was crying so much. Special K took it very well since I was supposed to be spending time with her. I can't take her out unless someone stays home with Little T, because he can't be exposed to germs. And as is typical, I felt a mixture of pleasure and annoyance. I don't know if this makes me a good or a terrible mom. While it was terribly annoying to have to come home because Little T was crying, I was pleased with my boy's social intelligence. He was crying a frenzy with heaving dramatic sobs utterly convincing in his great suffering. He stopped crying as soon as I held him and told him I was staying. He gave me a look of great satisfaction and a big grin. I just read a blog from someone whose kid doesn't care who looks after him. Definitely not the case with my laddie.

I realised that I have written 90% of the first three chapters, but still need to complete the toughest 10%, which will probably take more time than I want to think about.

Part of what I need to write about includes death, which I didn't even want to think about until Little T was stabilized. He appears to be stable and up on a upwards trajectory, thank you very much gods. So far during this current round I'm not worrying that Little T is going to die. (knock on wood) But at other times Kasabach Merritt Syndrome and his infections have threatened his life. And I'm not even going to link back where I've blogged about it like I often do. It just drags me back down. And I'm also superstitious.

So I'm at the point where I can feel the book proposal is so close to being finished, but the work to get it done feels very daunting. I'm off to take a walk. It's partly to clear my head and partly for a good cause. I have a bunch of books that I want to try and sell at our local second-hand bookstore.

Little T's speech evaluation

Little T had his speech evaluation on Sunday. Both of his OTs suggested it at the end of September. We knew he was somewhat delayed, because he spent January to May on Vincristine a chemotherapy drug, which paralyzed his vocal cords. For months he could make no sounds at all. Before Vincristine, he was starting to babble. After Vincristine and until he was 11 months old, all he said was "gah." Then he started saying other syllables like "bah" and "mah". Then finally earlier this month at 13.5 months he said "bye" his first word. Now he says "hi", "yeah yeah yeah yeah" a lot and "uh oh" once. I thought that four words was good enough, but apparently not. None of his words label a person or object.

He points. He reads books for about two minutes. He occasionally answers questions with yes. All good. However he doesn't repeat any sounds. He doesn't respond to no. He doesn't follow any directions.

The thing that worries me the most is not repeating sounds. He stares at you intently with furrowed brow and then tries to do something, but he just can't do it. So he laughs or says "gah". Even if you say something he can already say. Something seems broken there.

Now I'll have to say what his speech therapist said, which is there's a huge variation amongst kids, so if you have a normal kid who doesn't have any medical issues and is like Little T, then I probably wouldn't worry about it.

The speech therapist will recommend therapy obviously through Early Start. We'll see what happens.

I've been talking and reading to him everyday, and asking him to do things. That's how I always treat him, but it's apparently also good speech therapy. The therapist also suggested giving him a choice of two objects and asking him to point to one.

Little T's slow rise

I guessed Little T's platelets would be 95. They were 97. That's not normal, but also not dangerous. If his platelets continue to remain at this level or above, he's going to continue on the same high dose of steroids for another month, then gradually wean down.

He's finally started gaining weight again up to 9256g, though the steroids are definitely stunting his growth, because he hasn't grown at all since he last measured on 11/16 when he measured 69.7 cm.

We had to wait over half an hour for his blood draw, but we had Sean again, so once again he got it smoothly on one try.

We're going down to once a week appointments now. Phew!

Despite the high dose of steroids, Little T is still laughing, scooting, and babbling most of the time. He only flies in rages about twice a day. His arm continues to shrink and his elbow now bends ever so slightly as the tumor slowly shrinks milimeter by milimeter. Though I am concerned that with the steroids, he seems to have lost his desire to walk or cruise. When I try to walk him, he won't hold his legs straight. However he pulls up on C and me all the time. Go figure.

My birthday and Thanksgiving

C took me out to dinner for my birthday so we actually got to spend a couple hours alone, a rare treat these days. C gave me the new Madonna album "Confessions on The Dance Floor" It goes back to her old 80's dance roots, except as C says "now she can sing". I enjoyed the album, especially "Hung Up". C also gave me some amber.

Thanksgiving was somewhat stressful. No family drama or anything. Though we did have an expected visitor who stayed on Friday for 4 hours. We could only stay one night, so that cut down our family time a lot. It's very difficult and stressful to sleep with Little T. His pump is very loud. He wakes up easily, so he woke up when we came to bed. Special K sleeps with us and gropes us in bed. So nobody slept well.

First Non-fiction Manuscript

26,146 / 80,000 (32.7%)

Polyamory on Montel 11/29

Montel will be airing an episode on polyamory featuring a poly couple I know, as well as the couple listed below, and other poly people. In the SF bay area, it will air on Channel 2 at 4pm. I'm Tivoing it if anyone local wants to see it.

Someone reviewing the show blogged "This is the episode that was filmed a couple weeks ago, and will feature X and Y (who were on the Bullshit episode). The chatter is that the taping went quite well, and X was as articulate as ever. Apparently the audience was initially a bit hostile, but she turned it
around."

One of the people I know blogged "My favorite bit, though, has to be the fact that Montel chose to close the show with a video clip of Z's daughter (a very poised age 15, and a TV actress, among her other talents) saying how GREAT it was to be raised in a polyamorous household."

I haven't seen the show and I'm not sure how out the people are, or if they used real names on the show, so I'm not using real names for now.

I'm skeptical that Montel can produce a fair show on polyamory or indeed anything controversial really, but I'll watch and see. I just hope that Montel showed my friends in a good light since they are good-hearted people. And I understand their desire to talk about polyamory on tv to try to dispel myths about it. Like any sexuality that goes outside of societal norms, there's a lot of ignorance and prejudice against it.

But I have to say that if you've never heard of polyamory or know little about it, I suggest you go to polyamory.org rather than watch Montel.

Little T's platelets and MRA

Unfortunately his platelets have dropped to 67. Below 50 is when we need to worry about him pulling up and cruising, but it's a downward trend. Also the clinic is closed on Friday, so instead of going in then as we would normally with a number like that, we have to wait until Tuesday.

The doctors have increased his steroids to 2.7mg/kg, so I expect him to get angrier. Right he flies into 'roid rages 2-3 a day. He already has a "moon face" from the steroids.

Poor guy had 3 sticks today to get an IV in him, because he had to go under general anesthesia for an MRA(an MRI with contrasting dye) to look at the tumor on his left arm. The MRA showed that his tumor is smaller than his last MRA in April. Not too surprising, and that it's not growing into anything important.

He came through much better than we expected. For the first time in numerous times under anesthesia, he woke up before he got to the recovery room. By the time I got there he appeared alert and pointed at me to try and get me to pick him up. Within five minutes he was drinking and then proceeded to drink 6oz over the course of an hour. That's a new drinking record for him. Poor guy he'd been off food since midnight the night before. And usually we give him a 600ml feed overnight through his g-tube.

Saturday

I had a lovely time at owlmoose's Moose Day tea. Owlmoose and her friends originally started Moose Day as the Friday after Thanksgiving and you always have a tea. I think it's a fine tradition. We celebrated a week early because anzubird and luvmoose were in town.

I also enjoyed hanging out at Ethan's afterwards. Then we all went to Supenkuche and met C and my dad and ate hearty German food.

Afterward C, my dad and I saw Fidelio. I've heard Fidelio can be wonderful, but neither the singing nor the music of this performance moved me. C said "I can see why Beethoven only wrote one opera." That seems rather harsh to me, because this was just one performance.

Christine Brewer the heroine Leonore/Fidelio sang with neither the range nor the depth to make me believe she would die for her husband. She stood like a man throughout the entire show even after she had revealed she was a woman. In fact when she pulled off her cap to reveal short hair, I think it took the audience a little bit to realise "Oh, that's right she's a woman." I think the role calls for a bit more vulnerability that she portrayed. And certainly better acting. The best singer Thomas Moser as Florestan the prisoner convinced me how horrible prison life that even though his portly frame indicated that he was clearly well-fed. Unfortunately the singing of Juha Uusitalo who played Don Pizarro the villain of the opera lacked the power to creep me out and at times was drowned out by the orchestra. In fact at times it was rather pathetic, because portly Florestan was singing over Don Pizarro.

The staging did a great job of portraying a grim prison setting, but was otherwise awful. Fidelio and Florestan are supposed to drive off Don Pizarro, except the way it was staged, the two singers were left singing in the dungeon and the door was closed behind them. So instead of reveling in the moment that they're free, you're worrying that they're trapped in the dungeon. Then finally the stage changes and they're out in the sunlight. Phew! What a sigh of relief. The opera's almost over. Though the denoucement was gorgeous and made me wish that the rest of the opera had been as good. Though I also had to admit it was also the most symphonic part of the entire opera.

We've seen all the operas for the fall season so we won't be going to the opera again until June.

Burma tries to hide its capital. The world notices...a little

C sent me this NY Times article on the day, Burmese government moves the capital to a secret mountain compound

Today I finally had time to gather more details about the latest bizarre behavior from the Burmese goverment and international reactions.

Web India states "Myanmar's new administrative capital at Pyinmana will be named Nay Pyi Daw (place of a king)...Sources told Mizzima News that Nay Pyi Daw is less than fit for a king with telephone lines the only modern amenity available."

It's drawing attention to Burma (renamed by the military junta to Myanmar), which is a good thing since most of the time the world doesn't even realise it exists.

According to the SJ Merc,

Secretary of State Condoleezza Rice said Wednesday the military junta in Myanmar is "one of the worst regimes in the world" for its record on human rights and free speech...President Bush also criticized Myanmar on Wednesday.

Wow, Bush actually mentions Myanmar by name. I didn't realise he even knew Myanmar was a country. Not that any actions followed these words.

U.N. envoy Paulo Sergio Pinheiro told reporters last month that "megaphone diplomacy" wasn't working with the increasingly isolated regime in Myanmar, and said human rights victims whom the West could help are being held hostage to politics.

I am frustrated, I am not happy with the approaches that the main countries concerned with Myanmar are having," Pinheiro said. "If this course will continue, I don't see any reason for optimism."

Pinheiro has not been allowed to visit Myanmar, also known as Burma, since November 2003. Appointed in 2001, his term expires in April."

The Boston Globe had a great editoral arguing

If the president wishes to show he is as concerned with fostering democracy in Asia as he has been in Lebanon, Iraq or Egypt, he will lobby the 21 members of the Asia-Pacific Economic Cooperation Leaders' Meeting to have the UN Security Council take up the issue of Myanmar, formerly known as Burma, and the depradations of that country's military dictatorship.

Unfortunately I think the chance of that happening are a snowball's chance in hell. Bush is fighting an unpopular and costly war in Iraq which is draining most of the US foreign policy resources. Myanmar is a mere bit player. China backs Myanmar. He doesn't want to annoy China.

I found this quote from the Malaysia Star somewhat amusing:

Myanmar should inform Asean if it has shifted its capital from Yangon to Pyinmana, said Foreign Affairs Minister Datuk Seri Syed Hamid Albar.

“When an Asean member country shifts its administrative centre and the others don’t know about it, it can be quite embarrassing,” he told Malaysian journalists here yesterday."

With less government presence around them, perhaps people in the capital will be more free to get on with their lives. But it also strikes me as somewhat disturbing. What will happen to Aung San Suu Kyi who is periodically placed under house arrest by the Burmese government? I couldn't find anything about that on the web, so I hope she's okay. My prayers go out to her and the other Burmese political prisoners.

As I hope you know, Aung San Suu Kyi won the Nobel Peace Prize in 1991. If you don't know anything about Aung San Suu Kyi, I encourage you to go your bookshop or library and read one of her books.

Letters from Burma, is a series of 52 essays (in English) she wrote for a Japanese newspaper. They talk about her travels in Burma, her family life, her beliefs and Burmese life. Whether you love or hate politics, I think you'll find it moving.

Freedom From Fear is also a collection of essays . The first essay is an essay written by Aung San Suu Kyi about her father who was also a revolutionary, the second part of the book contains political essays written by Aung San Suu Kyi and the third part of the book contains essays by other people. If you don't know Burmese history, then this is a good place to start, because her essays might confusing without this context.

Little T's platelets stay low

Little T's platelets today were 87, so really about the same. That's what I thought going in. But I didn't hear what I was dreading: he would have to go back on Vincristine. I'm very grateful for that.

C came with me and really it's far easier to ask hard questions when he's there. So I asked what would put Little T back on Vincristine. The short answer is his platelets would have to drop below 20. His doctor actually mentioned Vincristine when his platelets were 211, but she tends to be a pessimist. The time before, his platelets were down to 40 and she was envisioning them dropping down below 20. Of course the long answer is his platelets do have to improve over time, but he has some time.

In addition he could get a higher dose of steroids. He's on 2mg/kg and he could go up to 3mg/kg for a short time.

Sadly he is definitely immunocompromised on this dose, so he can no longer be in occupational/physical therapy in a group setting.

He lost about 50g. I think it's the effect of the steroids. He eats more and loses weight. What a great diet except that you

My writing continues. I caught up on the days I missed and my non-fiction book is at almost 24k now. I also finished an article on my breastfeeding experiences with both kids, which I plan to submit once I get critiques. Please let me know if you want to read it.

"Uh oh" and good news about Special K

I'm having a really hard time not worrying about Little T going back on Vincristine. I know we can get through it. We went through it before. But I feel sad when I think about him getting another Broviac, losing his voice, getting weakness in his legs. I don't know why I can't stop thinking about it. It does no good, since there's nothing I can do. And I'll feel silly if he does okay with the steroids.

Yesterday Little T said "Uh" Pause. "oh" when I dropped his bottle. He also said "Bye" to Roberta when she left. For the first time he said two words in one day. He hands out his words like precious gifts. Is that because he spent months unable to use his voice due to Vincristine? Prolly not because he sure says "Gah" all the time. He also says "Ahh!" when he's particularly pleased about something. Like when he got hold of the Tivo remote. He also gave me a big grin.

And I just went and read someone's blog whose baby is in the NICU teetering between CPAP and canula. Little T was on the canula for a day or so. To the doctors' amazement, his cardiovascular system held up even with the strain of supplying blood to a vascular tumor that was literally bigger than his head. I had forgotten about how worried they were in the first days with lots of tests and close monitoring. I guess I wasn't looking back far enough. In some ways, my boy is medically fragile, but in other ways he's incredibly strong.

I should add that Special K seems cheerful again. She's been dry for days. She's rushing about. She's bouncing again.

Her preschool schedules a phone call for every parent at this time. During our phone call, her teacher said that Special K was "smart, sweet, talkative. She finishes her work. She looks out for other kids. She wants to be a leader." After we talked more about that, we learned she's bossy. She also sometimes talks too much, but after she was removed from circle time once, she stopped talking when asked. That's my girl. Though I wouldn't know where she gets it from...

The best thing about the whole call was when I asked "How's Special K doing with her brother being sick off and on?" and her teacher said "I had no idea about her brother." We had written a note about Little T's tumor in the little form about your child you fill out at the beginning of the year, but evidently the teacher didn't read it. I hardly ever see her teachers because Special K likes to stay for lunch and different teachers look after the kids for lunch. Special K is certainly capable of saying her brother is sick, but obviously that's not on her mind when she goes to preschool.

Mostly Special K interacts with her brother by making him laugh, holding his hand, and telling him or us not to pull her hair or not to eat things (yes being bossy).

I'm so grateful Special K is doing well. I feel a bit better now. Thanks for reading.

Little T's milestones

I'm trying to stay positive since Little T is still smiling.

On Thursday (11/10) Little T sat up from lying to sitting all on his own for the first time. Previously he could do so with a little touch from me on his hip to help stabilize him. He spent a good hour Thursday night in his crib sitting up over and over again with a big grin on his face. It's a huge effort involving rolling over and half getting up on his knees, but you try getting up with a huge left arm that doesn't really work.

On Wednesday Little T discovered the joys of pointing at people. Yesterday he discovered the joys of pointing at objects. He pointed at a picture of Einstein and clouds. Maybe he's telling me his dreams.

He's gaining weight. On Friday 11/4 he weighed 8.5kg. On Tuesday 11/8, he weighed 8.7kg This past Tuesday, his weight was back down to 8.7kg (19.18 lb despite eating more. His arm shrank some, but I dunno where that 100 g went. He's still very short at 69.7 cm (27.4 inches) far below the charts. He's still below the charts in weight too.

Roller coaster down - tumor growing

Today Little T's platelets fell back down to 80, so Little T is back on massive amounts of steroids. We're not in the "fall down brain bleed" danger zone, but in the "fall off changing table" danger zone. Like most parents, we're already cautious about that type of falling anyway. He's already immuno-compromised. I'm bracing myself for more 'roid rages and days of holding Little T. Right now he's still scooting about on the floor, but we haven't given him the big dose of steroids yet. I'm enjoying the scooting while I can.

I had a bad feeling before I went in. His tumor seems to be growing at the back of his shoulder. He has two weird unexplained bruises on his thigh.

It's all very strange. His tumor is the smallest it's ever been in his life by several cm. And of course Torin's also the largest he's ever been. As the tumor shrinks or involutes, it also consumes platelets and fibronogen, because it's a vascular tumor, so it has to clot itself in order to shrink. Somehow he's managed to keep up with his clotting needs for months. Before this latest bout, he was KMS free since February. His bouts of Kasabach Merritt Syndrome seem to be related to the tumor's growth. But the growth itself seems to be small related to the amount that's shrinking. Overall the tumor itself is still smaller. Yet now he has KMS again.

My theory based, but on my reading of various KMS papers and my understanding of biology and no scientific testing whatsoever. But hey it's my blog. I can type whatever I want. I like the idea that hemangiomas/vascular tumors are placental tissue that wound up in the wrong place. It explains why they're relatively common and why most grows rapidly for a time and then eventually shrink. The tumors that cause KMS have a higher percentage of placental stem cells and that causes problems. Stem cells can morph into other cells. They can also call other cells to help them. The placental stem cells calls what it thinks are maternal blood cells, but are actually the kid's own blood cells. The poor blood cell platelets get trapped and so you have KMS. You get KMS when it grows, because of the influx of blood cells. It would also explain why some KMS tumors don't go away. The stem cells got morphed into kid cells aka tumor. Anyway, that's just my way of making sense of something that upsets me and doesn't have a well-understood mechanism right now.

A bittersweet milestone

Last night Special K, C and I went to our first party without Little T. He had to stay at home, because he's still immuno-compromised. We had a good sitter through the respite care agency. By odd coincincidence she has the same name as our wonderful teenage babysitter.

The party itself was lovely. Lots of friendly people. Good food. Lots of kids. One kid had the exact same hair as Little T, said "gah", and took the same delight into moving about as Little T. He was also about the same size as Little T. He's 10 months old, so I guess that means Little T is functionally about 10 months old. Watching him really made me miss Little T. We came home after 2 1/2 hours and Little T seemed happy to see us, but continued to play contentedly with the babysitter. What a relief!

The holiday season is upon us. So we'll attend more parties without Little T. I feel sad for him. He loves parties. But I count my blessings that he's still here, he's at home, we have time to go to parties, we have people who can babysit him so we can go to parties, and of course we have friends who have parties.

Gateway drugs and opera

Organic milk is the gateway drug C said. Though organic milk wasn't my first foray into organic foods.

On Friday night C, my dad and I had a good meal at Indigo. I really enjoyed the Butternut squash soup with pesto, but the salmon was overcooked, though the bed of miso noodles was delicious. Then we saw The Force of Destiny. The singing blew me away, but for the first time in a long time, the plot of an opera disturbed me. "Leonora and Alvaro attempt to elope but are foiled by Leonora’s father. Alvaro’s pistol goes off accidentally and mortally wounds the old man, who curses his daughter. Leonora’s brother Carlo seeks to avenge their father’s death." Carlo and Alvaro save each other's lives in war, but Carlo is unpersuaded by this fact nor by the fact that his dad's death was an accident. He goads Alvaro into a duel. Alvaro escapes and becomes a monk. However Carlo finds him again and goads him into another duel.

The plot both stretched the limits of my incredulity and struck me as terribly immoral and illogical even by the standards of opera. Usually operas follow a terrible moral code. I don't agree that unfaithful lovers should be killed or that women should kill themselves for love, but there's a certain logic to the whole thing. In this case it just made no sense to me.

The scenes between the men were among the most improbable. They switch from fast friendship to dueling in five minutes. But through their impeccable gripping singing I was most transported. Vladimir Kuzmenko and Orlin Anastassov made their SF opera debuts. And I'd happily go hear Vladimir in any opera. He exhilarated me. Zeljko Lucic as Carlo made me believe in his vengenance, even though once he was done, I remembered again how it made no sense. Unfortunately Andrea Gruber as Leonara wasn't so alluring and I had time to think and maybe that was the problem. However I thought dressing Jill Grove in a bustier and shiny vinyl coat as a gypsy was inspired, but maybe I just felt that way about her singing.

Little T speaks

Little T's smiling and scooting again. I feel such joy that I'm starting to have my son back.

He says "gah" a lot. Gah means something in Little T language, because it has many intonations, but I just don't get what it means. I asked him yesterday if he wanted a bottle and he said "yeah." I haven't heard any more intelligible words since. The previous word I heard was "bye" on Thursday though C says he said other words to him. Little T now has a vocabulary of four words: hi, bye, no, and yeah. However he says at most one word a day, so nobody but C and I know he can talk. When Special K knew four words, she said them over and over to anyone who would listen. The entire world knew she could talk. She had one Special K word "meh", but she kept saying it until C and I got what it meant -- food. It's such a contrast.

I took a few days off. Kinda hard to write when you have to hold a baby. Also Special K is having regression problems i.e an accident once a day usually accompanied by crying. I guess it's to be expected. This is the first time she's had any real problems, but it's also the first time Little T's been sick and not gone to the hospital and she's older now and perhaps better able to understand. So I've been holding her a lot too. A friend's taking her on a special outing tomorrow, which I hope will help.

But I started writing again yesterday. My non-fiction book's at 21,205. I'm hoping to have my book proposal done by Thanksgiving, but it may be unrealistic given how much baby and child holding still remains in my future.

If you enjoy the show Lost, you may enjoy this Lost Rhapsody.

Amazing news...but

This morning we had amazing news. Little T's platelet suddenly bounced back to normal (211) We're totally stunned. His tumor has never responded so quickly. We were expecting weeks of treatment.

This is our third round with it. The prior two times, it took weeks of steroids and Vincristine (chemo) before his platelet count returned to normal. Change was so slow. This time you can see drastic change. His arm circumference suddenly shrunk from 25cm to 20cm.

A slight worry is that his fibrinogen is now down to 156, which is below normal. It's probably because it's being used to clot off the tumor. At least we all hope so!

We'll give him two more doses of massive amounts of steroids. Then we'll cut back to half doses of massive amounts of steroids. We go back next Tuesday to see how things are going.

Steroids are awful. Not as bad as chemo, but steroid change his personality for the worse. I think of athletes on steroids all the time. No wonder they get into fights all the time and beat their wives. His doc says they're different 'roids. Whatever. They suck.

Yesterday I looked at the four syringes of medicine that C was going to give him and my heart broke just a little. In his early days, we gave him as many as 8 drugs at one time. Gods knows how all these drugs interact and they don't run drugs trials on babies. But my little observations are these. He used to smile at least once an hour. Now he smiles once a day and cries at least once an hour. He wants to be held most of the time if he's awake. He used to like to scoot about on the floor most of the time.

He flies into 'roid rages a lot. Little things just tick him off. Like if I hover over him too much. If I take away a toy. If someone is too noisy. His face contorts into this furious mask like the Incredible Hulk. He starts screaming very loudly. He behaved this way as a baby and I always said he was really a sweet guy. Sometimes the nurses would just look at me like "yeah right." Now I know he is normally a sweet guy.

At least I've removed one source of his rage. Normal platelets means no more hovering over him whenever he scoots about or pulls up. And I can count the doses until we cut back to half doses. Maybe that will take away the 'roid rage. Or at least bring back the scooting.

Anne Lammot's book Bird By Bird is one of several that changed my life. People ask "how do I get through this?" One way is dose by dose, day by day, hour by hour. Sometimes minute by minute.

I will tell you we also learned today that this will probably not be his last relapse. That some kids with his type of tumor are on Vincristine aka chemo for 3-5 years. So in some twisted sense, Little T's "lucky". Or maybe we're just parents and a doctor who won't take that course of treatment. Who knows? There's no standard course of treatment for Kasabach Merritt Syndrome, because it's so rare.

I also learned that the relapse may have been triggered by his getting the stomach flu. Or maybe not. So no more playdates. And we have to treat him as immuno-compromised for the rest of the winter. Though he is in fact immuno-compromised right now, because of the steroids.

But honestly right now that's more than I want to deal with right now. I'm mostly telling you, so you won't be surprised if you read that he had another relapse. And if you live locally, why you won't be seeing Little T anytime soon.

But I guess if they keep resolving as quickly without the complications that have landed him in the hospital five times, then it seems somehow manageable. I dunno. I can't really think about it too much. So I just think about today and how his platelets are 211 and just two more doses.

Scare leads to better news

We had a bit of a scare last night, because we saw petechiace on his left forearm. We were worried that his platelet count might be dropping to the dangerous internal bleeding level. So this morning C took him into for another blood test. His platelet count was 97! Not normal, but definitely out of the worry if he bumps his head stage.

The platelet numbers are points in time. We have two numbers. So far, they indicate an upward trend. We hope it stays that way. We hope it means the tumor has started shrinking again. But we need more data and more time to know anything. We just have to watch and wait.

We also had another small victory. Armed with my list of best blood drawers, the blood draw took only one try. Previously it took at least three tries with lots of painful digging around the vein. Last time in desperation I asked what I should do and I got the list.

Little T's tumor is regrowing

Little T's tumor is regrowing at the ends, though it continues to shrink around the middle. It would all be fascinating if it weren't my son. He's back on Amicar and Prednisolone (steroids), which means that he's immuno-compromised again. His tumor consumes platelets again. Kasabach Merritt Syndrome returns again.

Unfortunately his low platelet count (40) means that if he bumps his head, he can have a brain bleed. He's starting to cruise and he's wobbly. Normally he falls on his head every day. Not a hard fall, mind you. Just a slight bonk on the head. Not even enough to cause crying sometimes; certainly not enough to cause a bruise. He only has one functional arm, so he can't brace himself. So no more cruising or pulling up for him until his platelets come back up on their own. And we have to watch him very carefully. His platelets get measured again on Tuesday. It'll be a long few days.

We thought very carefully about getting him a platelet transfusion, but we decided that we don't want to risk platelet rejection, and the IV would be very tough on him. We'd still have to watch him just as carefully since we don't know what his platelets will do between now and Tuesday. And Wednesday was probably his lowest platelet point anyway when he had the bruising and petechiace. Each platelet transfusion increases the risk that he'll reject them. He's had so many platelet transfusions.

Health care frustrations

Little T's bruises and petechiace are fading. I take him to Hemo tommorrow. Something bothers Little T a lot. Probably his left arm, because whenever I move it, he screams at me. Actually he's screamed at me all day unless I hold him. I'm typing right now, because I have a respite care worker here. Thank the gods for that.

Yesterday I spent the entire day wrangling with our broken health care system in some form or another. I did get excellent care for Little T. I also emerged with a flu shot for Special K. I got special dispensation from the kids' ped to get it ahead of the flu clinic, which is two weeks away. I need to get us vaccinated before the Thanksgiving relative germ fest. So Special K got her shot today. She said "Shots hurt" with some surprise. I feel a little bad that the shot contains thimerosal aka mercury. But I'd feel even worse if Little T catches the flu and winds up in the hospital again.

However I failed to get anywhere in getting care for myself. I may end up paying for my physical therapy (PT) out of pocket. Through C's friend and Little T's OT, I found Nancy Byl a wonderful PT at UCSF who treats people with dystonia. I want to drive on the highway again. I need PT to retrain myself. Regular PT won't work. Telling me "do this" just results in jerking. And in fact when I had PT after my car accident, they just wouldn't do certain exercises with my upper body, because I would jerk too much. But tomorrow is another day. I just emailed someone else to get help with my appeal to the insurance company.

I also failed to get an apt with a local neurologist who specialises in movement disorders. I'm not sure if she's the right person to see anyway. I saw her in 1999 and she was very keen on brain surgery! At that time she told me to try a few drugs that didn't do anything for me. Her nurse suggested the Parkinson's Institute. I just gave them a call. Unfortunately they're not covered by any HMOs and it would be $385 a visit. We would cheerfully pay that much if we knew it would do any good, but no-one knows if my movement disorder is related Parkinson's. Maybe my maternal grandfather had it. But he was never officially diagnosed. It's all so frustrating.

But still, I started writing again on Wednesday. Back to my daily word quota of 500 words. Book's at over 20k now. I worked out a chapter outline on my non-fiction book. It will be 13 Chapters. Chapters 1-4 are basically done.

My big gay post

My college friend Beth Stroud lost her case on appeal and has been officially defrocked from the United Methodist Church for being gay. I think she's very courageous. And her case has opened some minds, even if the outcome wasn't what she wanted.

About the same time that I learned that George Takei (Sulu from Star Trek) came out as gay. And I just shake my head when people wonder why it's a big deal. It's still a big deal to be a gay Asian male. How many do you know who are out? In fact how male celebs do you know who are out who aren't basically retired? I know... um George Michael. And he was always singing about sex.

I can't think of a single female Asian celeb who's out as lesbian or bi. Maybe I'm just not up on my celebs. I'm not exactly a celeb follower. But what I do know is the number of known lesbigay celebs is not anywhere near 10%.

I wish it wasn't such a big deal. But we still live in a world where being queer still has serious negative consquences.

First word and worrying symptoms

Yesterday Little T seemed quite recovered from his illness. He said his first word. He said "bye" clearly and distinctly as his sister left the car for preschool. He has uttered no other intelligible words since unless you count 'gah' and 'yeah yeah yeah yeah'. At this age, Special K loved to repeat words over and over again. She made sure everyone knew she was talking.

I think Little T might have said 'mama' and 'dada' on several different occasions, but I'm not really sure. He combines it with other noises and says it once. He has a speech evaluation on Saturday. I'm not sure what the speech therapist will make of him.

Today we woke up to find that Little T's left upper shoulder was covered in huge bruises and petechiace. We tried to remain calm, but this has heralded trips to the ER leading to one diagnosis of a relapse of his tumor and several false alarms. I lean towards the latter. We call the Hematology nurse practioner. She's very nice to me. She said "We're keen observers." We decide that the stomach flu combined with the antibiotics has probably lowered his platelets sufficiently to cause the symptoms. We watch and wait. We'll see if the bruising gets worse. So far so good. We'll take him in on Friday. He was scheduled to go see Hematology on Tuesday anyway.

I go to my previously scheduled neurologist appointment. I get the flu shot. I call Special K's doctor to arrange for her to get the flu shot. I tell C to get the flu shot. Little T can't get the flu shot until December. He can't get any shots until six months after his last chemo. Until then, his immune system won't produce enough antibodies to make the shot worthwhile.

I thought Little T was at the point where he could just get sick and we wouldn't have to call doctors, but clearly I was just wrong. And I really should stop saying things like 'it's nice to have a normal illness." It just tempts fate. And he's just not normal. I'm not normal either, though my disability is far less serious. And the expectation of normality hurts.

So please send Little T lots of platelets and tumor shrinking vibes his way.

Cherry red desk

We went to Ikea and bought a small red desk. I love the absurdity of its ridiculous maraschino red. Ikea was celebrating its 20th birthday, so we also got birthday cake. And the icing on the cake matched the desk colours. Perfect.

My desk fits neatly in the alcove between the sofa and the kitchen table. And somehow I fit my writing in between all my other activities and it brightens my days. It has wheels, so theoretically I could wheel my computer around and write all around the house. qqqqqq122222222222222222223v Here Special K sat down and interjected her thoughts. That's one of the disadvantages of having this new ergonomic set up. My old chair was a bar stool. She still managed to climb up, but it was harder.

After Ikea we failed to go a friend's games party, which was sad, because Special K crashed and fell asleep. Though it turned out to be a good thing, because she's remained healthy...so far. (knock on wood)

The day after we went to a lovely fondue party, which Owlmoose blogged about. Unfortunately C was very tired and fell asleep, because Little T was up a lot....getting sick.

At the party I had a parent moment. You know one of those moments where a non-parent stares at you in utter bemusement. Little T urped all over himself and me. He was quite cheerful about it, so I just calmly set about changing him and trying to wipe myself down with a paper towel. I know before I had children, the thought would fill me with horror. But now it's the screaming I can't stand. And I know it can get a lot grosser and I was thankful it wasn't.

Unfortunately my gratitude was short-lived. We're now into day two of screaming and explosions from every orifice. My nanny is here. He's finally gone to sleep. And I'm thinking sweet cherry red thoughts. I'm also taking a couple days off from writing. My writing is back in the NICU days, and I start to worry too much about his illness, even though he just has a stomach bug. At least I hope so. Knock on sweet cherry red desk.

Training Dumb machinery

Little T. is sick. I'm trying to dictate to my word document and it's making a total mess of what I'm saying. Kerensa is crying in the background. not sure what she's crying about exactly, but she's sitting on the floor crying. It has been a very long weekend. We had a delightful time last night at the fondue party, but that's now distant memory

Here's what Microsoft made of it:

Little tea is set and trying to dictate to mind word document and is making a total amounts of what I'm saying Kerensa is crying in the background not sure what she's crying about exactly what she's sitting on the floor crime has been a very long weekends we had a delightful time last night's at the forum to 40 that's now distant memory

Mediamonkey makes me happy

My mediamonkey playlist got me back in the writing groove. I'm up to 18,690 words. I'm 60 words away from rewriting my book proposal.

Pulling up

It's been an odd couple days

C's friend has calmed down, but nothing has fundamentally changed, so I feel the situation is only just waiting to explode again.

I read and critiqued a friend's novel that was wonderful, but also heart-wrenching.

I just joined a study that might actually help me with my dystonia. I'm scared to hope, but I can feel hope pressing against my chest.

Little T has started pulling up on everything. For weeks he would only lean up on the leather couch and haul himself up that way. He tried other places but couldn't quite do it and would cry at me to help. I tried to help and he'd scream at me more. On Tuesday Special K and I were doing puzzles on the coffee table, Little T had to pull and see. With huge effort, he pulled up all on his own. Now he pulls up as he never had any problems and he's working on cruising. All of this involves a lot of fussing and crying as he gets frustrated. He wants me to pick him up. I have a sprained ankle. I shouldn't pick up a 19lb boy especially one who's arching backwards. I relent more than I should. By about 6pm my patience has worn thin. C doesn't get home until 7:30. I try not to go crazy before then. Some days I succeed.

I got no writing done yesterday as I was so worn out with dealing with Little T that I slept through most of the time the respite care worker was here. C really doesn't understand how draining the constant crying is. Today I wrote about 300 words. I'm behind. I must borrow my quota from other days.

What I've been doing instead over the past couple days is to put together over 20 hours of music that makes me happy. We can play music on our Tivo, but without a playlist after a while, it mysteriously kicks back to Live TV. During the daytime that's a lot of bad tv. Now I have music for parties too. I feel a real sense of accomplishment. I made the playlist using MediaMonkey, which also makes me happy -- the name of the program that is.

Depressed?

Last night we went to a singing party with some friends where we sang songs, eat dinner and the kids ran around. I loved sitting with Little T on my lap and singing with him.

C says I'm depressed. He thinks I'm more sad about missing this writing workshop than I should be. I dunno. I always worry about missing opportunities. I don't really have a good way to evaluate what I really need right now.

What I do know is that I keep writing. My non-fiction book is up to 17,808 words. I'm behind on my 500 word count today, but I'm more than ahead from other days.

Both Special K and Little T are wearing one sock.

Seems like a good time to do this meme:

Name 10 small things for which you're grateful

1. My sprained ankle is slowly healing, so I can walk around the house now.
2. The top of Little T's shoulder is now normal and not tumor.
3. Special K is over her cold.
4. Little T can wear little boy pants
5. Eating ripe organic bananas
6. Special K shuts the door to the bathroom so Little T can't go exploring there.
   
7. A nice hot cup of tea
8. Little T has started to look at books on his own just like big sis Special K
9. C has been getting together with some old friends.
10. After several "web site is down", I can finally pay my American Express card bill online.
    

I hate tagging people, but please carry on the meme if you feel so moved.

Waning moon

It's a waning moon and very bad stuff is going down with a friend of C's. C is helping as best he can and he can't take the kids along. So I can't be gone for hours and hours next weekend. My ankle's slowly getting better, but not better enough to navigate the extensive walking needed for public transportation. I can't drive that far. It also turns out that none of the other participants is coming down from the peninsula, so I can't get a ride. Bottom line: I can't go to the writing workshop next week. I'm really bummed about it, but it wasn't meant to be right now. One bad thing happening, okay? But three things are coinciding to make this not happen. There will be other workshops. This is a fiction workshop. And my current obssession is my non-fiction book.

I could sort of it see it coming when I sprained my ankle. I figured that sweetie that he is, C would drive me if it came down it. But it just felt a chain of events had been set in motion. Don't get me wrong. I do believe in free will. But I also believe in chaos theory. I believe a butterfly's wing can change the pattern of the weather in the amazon three thousand miles away.

Number of the beast

I got spam today. For the pet who has everything, now you can get it a cell phone.

My nonfiction book is now at 16,666. Well a little over.

Lame

We had company over which was lovely. My friends had a nice lunch in my garden while the CCS social worker did her session with Little T inside. She showed me why Little T will pull up in certain places, but not others. It made perfect sense when she explained it, but I'd have to think about on my own. I don't think very well spatially.

I wrote 500 words today up to 15,325. I'm totally obssessed with my non-fiction book. But after having a good talk with Jenny last night, I know I'm in a down phase. I really hate spraining my ankle. Bad stuff from my childhood. I feel it's a moral failing. I'm literally and figuratively lame. It's okay to be disabled as long as I'm not limping around. It's okay to be disabled as long it's partially hidden. It's worse and better that my ankles are hyperflexible because of my disability. At least I know it's not just because I'm a total klutz.

I hate having to literally have to count each step I make. I started to tell her it was the writing that was killing me. Guilt about that coming out. But actually I was feeling pretty good before I sprained my ankle. I was getting stray projects done like getting rid of books. As she kept telling me, I was getting my groove back. It's hard to groove when you're lame.

But after I said some stuff that out loud to her and blogging more stuff here, I feel a bit more free. I don't want to pass on this crud on to Little T. I sprain my ankle about once a year. Last year I was 8 months pregnant with Little T, so it's a lot easier this time around. Maybe this time I'll do my exercises better or something and I'll avoid it for longer. But I just have to face up to the fact that at least for the foreseeable future, it's part of who I am. It's part of the me that jerks. It's part of me that can't drive on the highway. I just do the best I can with the body I've got.

Special K seems largely unaffected by my lameness. She can now dress herself, get her own food, go to the bathroom, and play. She does need some help, but it's not like last year where she was frustrated and hobbled by my injury. Little T is too young to care. He just wants to be picked up. But I'm asking for more help this time. Next year will be better too. Little T will be able to do more. Special K too. I'm not sure what it is about this time of year that causes ankle sprains. I'll have to think about that. Got any ideas?

Lost

I wrote 1000 words today so my non-fiction book is up to 14,800 words.

I'm enjoying Season 1 of "Lost" on DVD. I just got a membership with Blockbuster Online. At the store, Blockhead has a one-month trial membership for $9.99, 3 DVDs out a time, unlimited DVDS. Membership includes coupons for two free in-store rentals a month. Pretty good deal, at least for a month.

However "Lost" gets a little repetitive. Stop now if you don't want Season 1 spoilers. For example, we learn that Sawyer's dad killed his mother and then killed himself after a grifter swindled Sawyer's mother. Then a few episodes later, we actually see the scene. Gratuitous. We already know that it made Sawyer very very sad. Similarly we see several scenes in which we learn that Jin beats up people for Sun's dad the mafia boss and he hates it. Also weird things happen that surprise me, but so far the characters themselves haven't surprised me. Now in the "Sopranos", the characters themselves do things that surprise me while still acting entirely in character. Now that's really really cool. I hope I write like that.

Ghost of blogs past

From akienm:
1. Delve into your blog archive.
2. Find your 23rd post (or closest to).
3. Find the fifth sentence (or closest to).
4. Post the text of the sentence in your blog along with these instructions.

From Grief and not eating "Intellectually I know that he's actually getting all the nutrition he needs via tube and he has large reserves of fat." He's still getting most of his nutrition via tube and most of his fat reserves are gone. Yet he continues to grow. He gets stronger every day.

But to be honest, I still struggle with his eating issues. It doesn't loom as large as it did in May. I no longer fear that he wants to die. "But I still mourn the fact that he no longer breastfeeds." That's still true. But gradually my mourning became less constant. Like any type of loss, I became reminded less often.

And right now he's forcibly telling me that he's fiercely attached to me as he demands that I hold him while he goes to sleep. Gimpy as I am, I oblige. Though no standing and rocking today.

16 years ago, Now lame and sick

Sixteen years ago, I was at Bryn Mawr College during the Loma Prieta earthquake. A lot of kind people asked if my parents were okay. My parents live 100 miles away, so they were fine. I was touched by people's kindness and also amused by their ignorance of just how big California is.

I sprained my ankle on Saturday night. We were rushing to see Wallace and Gromit. I stepped too quickly off the step to the garage and slipped and fell. I have hyperflexible ankles due to my disability. But mostly I was rushing too much. I also should have asked C to get my ankle brace before going to the movie. He did get me an ice pack. But shoulda-coulda-woulda. I'm trying to let go of useless recriminations. It's a hard habit to break.

My cold has also worn me down. Special K asks every few hours "Mommy, are you still sick?" "Yes, I'm afraid so." I answer. C told me "You've been sick, lame or sleep-deprived for over a year." It made me feel sad at first. Then I realised it's basically true, yet I still carry on. I wrote 300 words yesterday on the Road to Mandalay. I wrote 1200 words today on my non-fiction book, which is now 13,820. Still keeping up with my quota.

Writer's liberation

I found more words of wisdom from Jenny Crusie about writer's liberation. She compares getting published to getting married. It really resonated for me. It's not supposed to be a goal and it's not an end in itself. Marriage is delightful. I'm sure being published is also. But getting published also means you have more work and more criticism. And instead of rejection letters that you receive privately in your email or mailbox, the criticism is public. That's why I held off submitting my writing until I was ready.

One of the best decisions I made was choosing my husband. But I did work a lot on myself first. And I continue to work on myself as a writer, to make myself a good match for an agent. I read books and blogs about how it's supposed to be. That great relationship. Except I'm not even looking yet. I look at personals now and then. My non-fiction book is now at 12,600 words.

Writing and Doctor Atomic

Yesterday I wrote 1000 words today up to 11,775 on my non-fiction book. I thought I had chased away my cold with Vitamin C, echinacea and goldenseal, but it's back. Or maybe it's a different cold. I'll try these remedies again.

There seems to be a rivalry between Agentoo7 and Miss Snark, so I should say I read both.

The opera Doctor Atomic promised a big bang but ended with a whimper. I even heard a woman say "That was nothing." The bomb was still there at the end of the show! The music attempted modern cacophony, but it never varied in its deviation from the norm. So after a while it became too familiar. Though at times the sound effects were interesting. The composer said he wasn't familar with opera and sadly it showed.

The singing was frankly quite boring. Lots and lots of narrative singing. A couple of arias. No duets. Lot of words that explained the history. No rhyming. No couplets. No poetry. It was more like a recitation of a history lesson. I was moved a couple times by the music and the image of the atomic bomb hanging over the crib. I was never transported. You'd think with such a gripping subject as the building of a nuclear bomb, he could do better. I was disappointed, even with the low expectations I had.

Brother and sister laughing, bills, more writing

The kids are laughing together at some joke known only to themselves. Little T doesn't cry when he falls down and his head hits marble if his big sister is there to watch. It amazes me how well they get along. I remember that my younger brother regarded me with adoration when we were kids, but I also thought he was rather a pain until he was sent away to boarding school. Special K seems to really enjoy entertaining her little brother. And bossing him around. Now that part I did enjoy. "Here's your baby shark that you must play with." And of course he does. Then they both laugh again.

C sent me this article just after wrangling with T's medical bills: Treated for Illness then lost in a labryinth of medical bills.
It spurred me on to write more.

I wrote 1000 words today of my non-fiction book. It gradually coalesces into a sleek shape all its own at 10,778 words.

Drop-off class & Finding an agent

I managed to write 550 words somehow today. I took Special K to gymnastics and to a ballet/tap class. The ballet/tap class is her first truly drop-off class. You drop off your kid and go away. The sign explicitly says parents aren't welcome. It's another milestone for us. I'm not there with her in gym class, but I can watch and most times I do.

I pulled two interesting essays about it's all about you about defining yourself as a writer and Impossible Dream: finding the right agent by Jennifer Crusie from Miss Snark. I agreed with the first essay. I think it's my MBA showing, because it's all about setting a career plan. The second essay also reflects me as well, because it talks about chemistry, although it doesn't actually use that California fru-fru word. After years of working, I know chemistry really is important.

I also think it's funny that Miss Snark writes "I don't agree you "hire" a agent." She's technically correct, of course. To hire means that you engage the services of the person for a fee. With a agent you engage their services for a percentage of the royalties you earn. However I think Jennifer's connotation was that she's the one bringing in the money.

Salmon

On Sunday we drove up to the Salmon Festival. Special K loved feeding the rainbow trout fry. Little T loved watching her and everything else.

We gazed down at some ambitious salmon who were trying to gather early to spawn, but the gate to the fish ladder wasn't open yet. We talked to a park official who said the water wasn't cold enough yet. The salmon were immature. The eggs were unripe. In some ways I feel like those salmon. I'm not ready. The gate hasn't been opened yet. And even after the gate is opened, I'll still have to jump up. One of my friends wrote a poem about salmon leaping up the salmon run and law school.

I'm still an immature salmon who has 9250 words of her 75k non-fiction book written. I wrote 850 words today. I'll write a lot more and have a solid book proposal before I send it off to agents. I think I'm about a month away. That's about how far the salmon are too. It amuses me.

I talked to my sister more about her former life as a literary agent. I've also been reading Miss Snark's blog. I thought it was interesting that she wrote she wasn't one of the most powerful agents in town. On the Internet no-one knows if you're a dog. And I laughed when she told people to stop querying her. I can't imagine querying someone whose work I know nothing about. Of course I need someone who believes my non-fiction book is wonderful. But I'd also prefer an agent who's already sold a book similar to mine.

I also revised my personal essay about my struggles with breastfeeding to send to another parenting magazine.

Pancakes and Rodelinda

On Saturday we went to the first annual FireFighter's Pancake Breakfast. It reminded me of the pancake breakfasts I went to in my youth. Special K had a great time wearing a plastic firefighter hat and climbing fire engines. Little T loved scooting about on the straw and rolling a small pumpkin about.

On Saturday C and I had a lovely dinner at Jardinere with my dad. Then we all attended the opera Rodelinda which was done by the same people as Alcina. Alcina was memorably awful. It featured folks in leather costumes writhing around on the floor. Rodelinda ended almost every scene with a man on the floor. The first act no-one could sing an aria without at least three other people doing something else completely unrelated in the background. I guess they feared we might get bored. I found it distracting. I did like the 1940's noir set, but I disliked the Mussolini references.

I also hate when a producer blatantly ignored the libretto. If someone sings "I embrace you." Then she should be embracing someone literally or figuratively. But the second and third act are much darker and the ethos of the production seemed to be that it was okay to let the singer just sing if they were singing something sad.

I wrote 600 words on my nonfiction book today. It's up to 8400 words now. I think it'll be 85k. 79.1k to go. I also revised "Cascade".

Got my 500 words in after all

Woohoo! Special K and C took a nap while Little T was content to explore the living room, so I wrote 500 words on my non-fiction book.

Word, Singing and spam

Word ate my cover letter to Lee & Low, so I finally decided to install Microsoft Office 2003. After a lot of painful waiting and restarting I installed it and Service Pack 2. I think singing "Go service pack, go" helps the process, but it only worked the third time after I sang it throughout.

The new word wasn't able to open the cover letter either, but the new help was more helpful, so I was able to retrieve a backup copy from this strange directory I was vaguely aware that existed back when I was a sysadmin.

So I feel okay about more $$ to the man. Or rather to my sister-in-law who works there. I think one of my exbfs still does too. Both them are nice folks.

Speaking of word, I'm turning on word verification here, because I'm getting spam about....no not penis enhancement or Viagra, but speech therapy of all things. I did mention it a couple times in my blog, but to comment "I found a lot of useful info about speech therapy on your blog" is stretching it a lot. Hope you actual commenters don't mind too much. Please let me know if it's too much of pain.

I didn't actually write anything today, so I have to borrow from yesterday's count.

Please Petition Your Hospital

One of Little T's life-threatening infections was probably caught from the hospital, so this issue is personal for me. Please please sign this petition and Consumers Union will deliver it to each hospital in your area. The petition asks the hospital to publish its hospital-acquired infection rates.