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.