The Po Show

Sigh

Today is Hands on Science Day at school, which they hold every year in conjunction with the Putnam Discovery Science Center. It's a great opportunity for the kids to get do lots of fun interactive science experiments. Last year was Tessa's first time, and she loved it. Matthew's gone every year we've lived here. They've both really been looking forward to this year's event.

I was really looking forward to it, too, because it's on Saturday. As in, it gets BOTH kids out of the house on a weekend, when Ross is home. We never ever get a chance to be alone in the house together; I'm jealous beyond belief of people who can pack their kids off to Grandma's for the weekend, or even just overnight.

So I was REALLY looking forward to some high quality late morning nookie, and then dim sum for lunch (which the kids are very intolerant of, so it's not really worth trying to go with them). FOUR HOURS of kid-free couple time, yay!!!

All started out fine this morning, though Tessa was whiny about having to have a hot dog at lunch (I prebought them the meal plan), so I told her that I'd pack her some tofu to take with her. Then around 8:30 Matthew came up to me and Ross and said he was feeling a little nervous about going. I reminded him that he'd been excited about going (and mentally reminded myself to leave them our cell phone numbers, in case of incidents).

Then around 8:45 he went to the bathroom and started screaming. He said his abdomen really hurt, around where his bladder is. I had him lay on the couch and tried massaging his abdomen, but he said that just made it worse. He continued to grimace, and intermittently scream, for several minutes. I gave him some simethicone (thinking it might be gas-related) and ibuprofen. He said it still hurt so much he couldn't move.

Well, this was not good. He'd had some problems with having to pee every 5 minutes when he started taking Topamax the last time, so I wondered if it was a urinary retention issue (even though the psychiatrist said she didn't think that was a common side effect). I also wondered if it could have anything to do with the fact that he ate like 4 or 5 bananas yesterday (that's a snack he can get for himself, and the appetite suppression effect of the Topamax definitely hasn't kicked in yet). Anyway, it was obvious that he couldn't go to Science Day. He seemed a little sad, saying he'd really been looking forward to going, but all in all he wasn't too bummed about having to stay home. So I also wonder if this was a stress effect.

By 11:00, he was feeling much better and wanted lunch. By noon, he was jumping and running around and stimming as usual. Of course I'm glad he's feeling better, but grrrrrr, was it SO much to ask for something to go smoothly for once?

What Would Pikachu Do?

Well, not actually Pikachu, but some other, very level-headed Pokemon.

I sat in with Matthew during his weekly therapy session yesterday, which was a nice development. For a year and a half now he has not wanted me to be in the room during his sessions, since he HATES to hear people talk about him. Plus I always had Tessa along, so we would just sit in the waiting room. Last week, though, was our emergency session, and Ross came home from work so he could sit in. I sat in too, and Tessa willingly waited by herself outside. After a bit her "friends" showed up to keep her company (some girls who attend an OCD group that starts after our session, and Tessa the social butterfly made friends with a couple of them, weeks ago, even though they're all several years older). Yesterday she was by herself the whole time, but she handled it well.

So last week the therapist had tried to get Matthew to think of someone he admired, that he thought of as a role model, and he couldn't. I guess she puzzled over it during the week, and came up with the idea of asking him if there were any Pokemon characters who had traits that he admired. (Yes, she's really brilliant. I guess she's earning her $175 an hour.) She asked if there were any Pokemon who were good at controlling their emotions, who were patient, who were kind. She had printed up some Pokemon pics from off the net, and asked if they were good examples of Pokemon who might be role models.

Matthew's so funny: he told her after awhile, "Well, I didn't want to say this, because I didn't want to embarrass you, but several of the Pokemon you downloaded are the most destructive Pokemon in the entire universe!" She hurriedly said that then those were NOT the Pokemon we should think of as role models. She asked him if he could go online at home and print up some pictures of Pokemon who WERE good role models, who had some characteristics that Matthew might find useful. She gave him some index cards to glue them to, and we'll use them next week. And she said she would immediately recycle the destructive Pokemon she had printed out, because we don't want to use their kind.

I ran with the idea, and said that many Pokemon have trouble controlling their powers, but they TRAIN to learn to control themselves. They work hard, and their trainers help them, and together they learn to make the most of their powers and go on to win tournaments. Yeah, I'm pretty fricking brilliant too.

So this was the most positive turn in therapy in a long time. If we can help him learn to stop, ask himself what Slowbro would do in this situation, and not immediately lash out, that will be a wonderful, wonderful thing.

Pharma-Go-Round

So I picked up Matthew new prescriptions today: risperidone and more Topamax. He's weaning off the Abilify for a week, and then goes on the risperidone next week. We're adding Topamax back into the mix; it was unclear whether it was exacerbating his insomnia when he first went on Abilify, so we dropped it. We're trying again, to try and combat the probable weight gain from the risperidone (Topamax is known as the "skinny drug" in the mood stabilizer/epilepsy world). He gained 12 pounds on Seroquel, so that'll be good if the Topamax works to decrease his appetite.

It'll be ironic if the risperidone turns out to be the right drug for him. That's what the psychiatrist was going to start him on, almost a year ago. I was not at all opposed to it, though it was freaky beyond words for me that my CHILD would go on this anti-psychotic drug that I used to administer to smokers to see how it affected their smoking. I know this drug well, and know the possible side effects like the back of my hand (writing 1000 informed consent forms has a way of impressing things on your memory).

But that's not why the doctor ended up prescribing Seroquel instead. I had just read a story on the front page of the New York Times that morning (above the fold), about a teenage girl who was prescribed Risperdal as a mood stabilizer, and she ended up with all kinds of nasty adverse events. Thus, when the doctor told me, "So we're going to be starting him on Risperdal," I got this weird, out-of-body feeling, like "Am I in the Twilight Zone?" I didn't say anything right away, but eventually mentioned the article. I clearly told her that I didn't have a problem with Matthew taking the drug, just that the coincidence was a little overpowering. She immediately said, "Okay, let's go with Seroquel instead!" I told her that it was fine, if she thought Risperdal was better for him, I had no problem with it. She said that Seroquel should work for him as well, and it had a better side effect profile, with less potential weight gain. I just rode along.

I'm still just riding along. No one knows what will help him. We thought Seroquel was helping, and then it wasn't. We thought Abilify was working great for him, then, not so much. No one can look in his brain and figure out which receptors need to be tweaked the most. We just keep trying, and trying again, and the hit and miss is in my child's brain and in his future. 'Round and 'round and 'round once more.

No Words

We're all saying the same words.

"Oh my god" "I can't imagine" "I'm speechless" "My heart goes out to the poor family" "What can we do to help?"

And the undercurrent thought, "That could have been me. That could have been my child."

And further under that, "That could be me. That could be my child. Tomorrow." We're all just inches from tragedy, and we move through our lives trying not to think about that, because how could we go on with the daily dance of routine if we thought about it?

A little girl, born in the same month as my boy. A little girl I knew before she was born, even though I never saw her in person. She loved animals, especially dolphins. She took karate lessons. She wanted to be a vet. Her mother, a friend who shared our community of friends and mothers, all drawn together by the random chance of conception and the desire for cyber connection. Her little brother, born less than a year after his Auggie sister; everyone always thought they were twins. Her father, who got the call that his family had been in a car accident, and that his little girl was dead.

For most of us, it's about looking in from the outside in horror and sadness and compassion. We have no idea what the ones on the inside are feeling; we can't know. And we have no words to say how sorry we are.

365 Days

A year ago, I flew to LAX. I didn't spend any time in Oxnard, or even in L.A. itself. My FIL picked me up and drove me straight to the UC Irvine Medical Center, and that's where I stayed.

I was supposed to go on March 17, St. Paddy's Day. But on the 16th, there had been a huge ice storm and all flights were cancelled. I couldn't believe it. I mean, really, how often does an ice storm in March shut down all air travel down the whole eastern seaboard? And how often do *you* need to travel on that very day?

So I made it on the first flight out of JFK to LAX on Sunday morning. At just past 2:00 PST, I was walking into the Neuro ICU. I was there to see my brother, who had had a massive stroke that had almost killed him. A little over a week before, he had been in a coma. He had had major surgery that had been very touch and go. He had only been conscious and talking for a couple of days.

When I walked in, he was sitting up and eating a cherry popsicle. His face was expressionless, as was his voice, but he recognized me and was glad to see me. Over the course of several conversations in the next couple of days, it was clear to me that he didn't know where he was, or what had happened to him. He had been told he was at UCI, that he'd been airlifted there, but he kept forgetting. He had no idea he'd had a stroke. He thought he was there because of the prostratitis he'd been suffering prior to his stroke, the infection that caused his blood pressure to go up over 200 and pop the branching vessels in his brain. He wanted to go home.

I was there for a little over 2 days. He had various ups and downs during that time, and by the time I left, he was back on the ventilator so he couldn't talk. As I was leaving, I said, "I'll see you in the summer, and when I see you again, you're going to be so much better. You're going to be home." My eyes filled up with tears and I said, "I love you, Kaz." His eyes filled up too and he mouthed back, "I love you, too."

In the last 365 days, he's improved so much it's astonishing. He's talking (and sounding like himself, rather than that flat voice lacking in inflection) and walking without a cane. He's driving again, and he goes to the farm every morning for a couple of hours. He's still pretty weak, and he tires easily, but he's still fighting like crazy to regain his strength. The most noticable residual effect of the stroke is that he still can't taste very well. Very few foods taste good to him, and most things are too sour or have no taste at all. And he has no memory whatsoever of the months between his stroke and when the shunt was placed into his brain, when he came back to himself.

He sent me an email yesterday, saying "Well, it's been a year." I sent one back, saying that it was exactly a year since I tried to fly out, but couldn't because of the ice storm. I told him how awed I was of all the progress he's made in the past year, how proud I am of him. I told him the story about telling him I loved him, and how he mouthed back that he loved me too. I told him again that I loved him, since now he can remember it.

He wrote back and said that it's interesting to hear about aspects of those lost months for him. He'd had no idea that I'd been delayed by the ice storm; I guess by the time he was able to remember things again, no one told him. Another piece for him to add to the puzzle of a period of time that it's probably just as well for him to forget.

He said that my nieces wanted to have a party for him, to celebrate the year he has had. He wanted to keep it small, but apparently my aunt and even my cousin from the Bay Area are coming. Kaz said that he'd have some linguine with clam sauce in my honor (since he knows that's my favorite), even though his taste buds are still shot.

I wish I could be there.

MADNESS

Number One Seed in the West, as hoped, as dreamed of, as expected after they clinched the Pac-10 Tournament yesterday.

Two years ago, they made this insane, over-the-top run to the final game. Last year, they got knocked out in the Final Four. This year, we have more hope than we have had since the last time we had the top seed in the West. 1995, the first year Ross and I were back in L.A., living in Westwood Village, pouring out into the streets with hordes of undergrads after the boys won the first championship since the days of St. Wooden. We were old fogeys, and did not overturn any news vans, but I will never in my life forget the exhilaration.

I wait all fricking year for this.

GO BRUINS!!!!!

Asian American Media Alert

There's a new cartoon on Cartoon Network, featuring the antics of a trio of martial arts experts, called Chop Socky Chooks.

CHOOKS? Really? Isn't that just a tad close to Chinks + Gooks?

Speaking of My Poor Old Body...

emphasis on the old...

I've found today that I have other body parts that get sore when they are employed in a vigorous fashion. This did not happen so readily in the past. Gack, now I really feel old. I had the tune of "The Old Grey Mare" going through my head as I showered this morning.

Then as I went through my morning computer tasks, I started listening to this fabulous compilation of '80s hits (that our friend bought for $5 on a street in Manila). HUNDREDS of hits of the '80s, from 1980 to 1984. Those were my high school years, so in essence this is the soundtrack to my time in high school. As I was singing and head bopping along, it occurred to me that this song, the theme from Flashdance, was TWENTY-FIVE years old! A quarter of a century. I remember how odd it was for me when I turned 25 years old, that *I* was a quarter of a century old, and now music that I danced to, and sang along with, and had sex to, as a junior in HIGH SCHOOL, is now that old.

I know, it's all relative. My old boss (as in former, though he was pretty old) used to sign everyone's birthday cards with "Oh, to be ___ again!" with whatever age they were in the blank. He wrote it for people turning 22 and people turning 55. So I know that my dismay over 25 years is going to look silly when it's 35 years, and when it's 50 (if I'm fortunate enough to see that day come).

But I wouldn't be me if I didn't fret, right? If you would be so kind as to call it fretting, as opposed to whining, or bitching. I think I told that story about my old boss signing birthday cards before, here on my blog. You know us old folks, forever repeatin' ourselves.

And Carrie, my poor old body would totally love another spa day with you!

My Old Back's Back

When I was a preteen and teenager, I had a seriously messed up back. Actually, I was messed up in ALL kinds of ways, but I had a constantly aching back. I started going to a chiropractor when I was 13, and continued till I graduated and went away to college. I always said that I couldn't wait til they started doing back replacements, because mine sucked.

My chiropractor, Irwin (the first person I ever knew who wore Birkenstocks, long before they went American mainstream), told me that I had the back of an 80 year old woman, and somewhere there was an 80 year old woman walking around with mine. (I went on to do some serious partying with Irwin, who was involved in the same community theater group I was. Kind of funny being a 16 year old partying with your holistic chiropractor. Only in Cali.) Later when I started dancing in earnest, my back got a lot better, so I think my bad back was really a product of being a sedentary bookworm who read for hours and hours and hours while sitting on the crappy old loveseat in my TV room (that is STILL there! I swear, I am buying my mother a new loveseat this summer!).

So my back has been okay, with intermittent pain, for all the years since. Actually, my shoulders are always REALLY tight. My sisters and I, that's where we hold our stress. On my 30th birthday, I got a massage and the masseuse working on my sciatic nerves asked if I had any upper back pain. I said sometimes, and she ran her hand up to my shoulders (rock hard as usual) and she breathed out, "JESUS!" Yeah, guess I was a little tight. But it's always been perfectly manageable, my back.

Till now. The last few days my back has really hurt, and I didn't do anything major like heavy lifting or anything. I think it's just been jacked up by sitting at the computer too much. How sad is that?

So today I decided I needed to try and do something about it. Now, you all know that the only exercise I like is done indoors (at least these days) and requires a partner, so this was a major event. I went ahead and got my Lilith Fair on, put on Sarah McLachlan, and started stretching. It's been so long since I did yoga that it would be comical if it wasn't so pathetic. NO balance, NO flexibility, NO endurance. But I soldiered on and did the best I could.

And dang me if I don't feel a WHOLE lot better now. Though I'm still waiting for that back replacement.

My Biggest Fan

Tessa brought home an essay from school today. Here it is, with inventive spelling corrected so that people other than me can understand it :) :

Dear News Channel:

I think my mother should be president, because she believes in peace and working together.

From Tessa

PS: make sure she goes when I'm an adult.

Afraid of Bed

Sometimes I get in this weird place, in which I'm afraid to go to bed.

I hate to go to bed by myself, even if I'm not alone when I get there. My big warm snoozy lump of a husband is already there, so what am I afraid of? I never go to bed first, even when I'm dead tired, because I can't bear to be in there alone. When Ross is out of town, I stay up until I am literally falling asleep at the computer, and then I still pop a melatonin before I brush my teeth and venture into the cold vastness of bed.

But even when he's there, I have trouble bringing myself to shut down the computer and turn off the lights and move my act to bed. It's like I missed my chance when I didn't go to bed at the same time he did, and it's irrevocable. It feels wrong. So I continue to sit at the computer and surf and read bullshit, just so I won't have to go to bed.

I was working on relisting a million ebay auctions tonight, while Ross watched some Tivo'ed movie. I listened in, occasionally looking over at the reflection of the TV in our standing picture screen (what Tessa calls "Mom's TV"). At about 10:30 I finished and went to sit next to him on the couch and he said that actually he'd been planning on going to bed. But I needed some "down time" still, so I didn't join him. And now I feel like I can't.

Which I guess is why I just spent the last 10 minutes typing this out, so I wouldn't have to go to bed.