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.

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.

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.

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.

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.

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.

This morning we had amazing news. Little T's platelets 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.

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.

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

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

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

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

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

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

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

I went to my neurologist on Friday and he suggested Topamax. He said my vertigo which seems to be increasing in frequency may actually be a symptom of migraines. I guess that makes sense. Topamax treats migraines and seizures. He said he wanted me to try the Haldol again later, but I'm not keen on it. Especially since he said that some of my jerking seems to be tics perhaps related to ADHD. I know that ADHD is not one of my problems. If anything, I sometimes get too absorbed in something. I tried Topamax for the first time last night. So far I didn't notice anything, but it's a ramp up dose. I take 25mg at night for two weeks, then ramp up to 50mg. Then I see him again in a month.

On Saturday I gave in my Haldol prescription, but as often happens when I build myself up to do something, the universe had a little laugh at my expense. The neurologist wrote a dosage that "doesn't exist" according to the pharmacist. He wrote it for .25mg and the smallest dosage is .5mg. I'm not sure whether to worry about the pharmacist or the neurologist since this is my first time going to either. In hindsight perhaps this was a bad idea, though Longs Drugs is a big chain.

Afterwards we drove to C's company picnic, which featured delicious ribs. For some reason, lately, I can't get enough of ribs. Dunno why. C suggested I might have an iron defiency, which I can believe after supplying Little T my little vampire baby in utero. He's 10.5 months now, but I haven't exactly had time to eat that well. Guess I'll have to take a multi-vitamin.

Little T did his best to look hale and hearty. He's a chubby baby. Force feeding via tube will do that to you, I guess. At his GI apt, his weight gain was almost a hockey stick with his height growth not too far behind. He really wants to get on that 3rd percentile. He's still below the growth charts for now.

Special K ran around and had such a great time she didn't want to go home.

Later we drove to SF to visit some college friends of C. We had mai-tais and saw photos of their Hawaii trip. Today we went to visit one of my college friends and see her new puppy. Our social life is starting to approach something more normal, though we still can't go anywhere more than a two hour drive. That brings me to my next post.

You may say, well duh, it says right there in your blog description that you have a movement disorder. However for me this is a new act, a coming out, if you will. I have a rare esoteric movement disorder, myoclonic dystonia. My head, arms and hands jerk randomly sometimes when I perform small motor activity.

For a long time I felt like I didn't have a right to "complain" ie talk about my disability when others had it a lot worse. Thing is that all my life people have assumed I'm retarded, because I have myoclonic dystonia. Sometimes they treated me badly, and sometimes they treated me like a child. And I didn't really get it until my husband C explained this to me one day a waiter totally ignored me and insisted on getting our order from him. Before that I had unconsciously internalised that I was stupid on some level. Now recognizing this I just feel a lot more free to stand up and say I have a disability. Or rather jerk, and say I have a movement disorder.

For the most part myoclonic dystonia does fall into the "bothersome" as my neurologist puts it, and annoying and never life-threatening. It is at times painful when I whack myself and the way I drive is slowly destroying my wrists. I lock my wrists and grip the wheel far too tightly for no good reason other than conditioning. I have had the usual share of fender bender and minor accidents, but they were all due to my inattention; no accident in 20+ years of driving due to my movement disorder. And it's not because of my wrists.

I want to say myoclonic dystonia is not life-altering, but that isn't true. At one point I considered becoming a doctor, and took a bunch of premed classes. But I didn't because with my disability, it was too high a barrier and I didn't want to become a doctor enough to overcome it. But until I got all this straight in my own head, I had this idea that disabled people were blind or were in wheelchairs. I was half disabled if you will. Like I'm half Burmese.

But the driving thing is changing my life. I can't drive farther than 10 miles at the moment, because my wrists just can't take the abuse. So I'm willing to try drugs again. For the first time in three years, I visited a neurologist last Wednesday. I've been putting off blogging about it or dealing with it. Since myoclonic dystonia is so rare, the description is symptomic. Neurologists have little idea what causes it. So when I take drugs, I'm performing experiments on my own brain. Try this one, they say. Let's hope it doesn't mess up the rest of your brain.

The first drug I tried made me burst into tears in grade school. The second I tried made me bipolar. I ran around campus like a madwoman then I'd crashed and I couldn't get out of bed for days. Drugs have improved greatly since then. Scientists have made leaps forward understanding brain chemistry in general and movement disorders in particular. In fact the name movement disorder and my diagnosis was invented by the neurologist who saw me at age 16 when I had my second bad drug experience.

Still I'm terrified to try new drugs. Even though since then I've tried a series of drugs, which, good news, don't affect my mental health, bad news, don't do anything for myoclonic dystonia either. The latest one I'm to experiment with is Haldol, which I know is also prescribed for mental patients. But it also blocks dopamine and can help with Huntington's chorea. Now I'm questioning my own sanity to try this drug. "It's only a pediatric dose," my neurologist reassured me. But the alternative he offered Gabitril sounds even more scary with its risk of causing seizures. Very very minor risk, but I'm still scared.

And I have to keep driving to take Little T to his myriad medical apts. So Haldol, it is. My neurologist suggested taking 1/2 hour before driving. I have no more driving today, but I will make a mental note to fill my prescription before Monday when I have to drive Special K to gymnastics. Logically I know that if he's suggesting I take it before driving that it's basically harmless. Wish me luck.