Thursday, June 30, 2005

Small World Email I sent yesterday

Remember me? Years ago, in 1994, I was a sysadmin at Xaos Tools. Like you, I was a Director of Engineering and it led me back to you. One of my former engineers who's now a friend emailed a link to your Tinkering School website, because he's sending his two oldest sons there this summer. It's a small world. Your school looks cool. I have two kids now, but they're too young to go.

The world's a big place, but the bay area software engineering community is still small. And I guess it'll get smaller if outsourcing to India continues.

GI clinic

Little T now weighs 7.05 kg or 15lb 9 oz, his length is 62.2cm or 24.5" and his head is 46cm. His weight to height ratio has dropped to the 68th percentile. So he's finally growing properly. We're amazed he still gained weight despite his sepsis and hospital stay. Before he always lost weight at the hospital. And it's all due to the NG tube. Not only the fact that he was force fed at the hospital, but the NG tube helped him gain weight to get bigger and stronger to fight the infection. He bounced back in a few days and now you'd never know he had septic shock last week. I'm still recovering.

At the hospital he didn't vomit at all after he started eating again. I think if we just had him lying on a bed all day, he'd eat more and not vomit, but we can't do that. He projectile vomited on his way to OT yesterday. And this morning he threw up as well. So we're increasing his Prilosec to the maximum dose. We'll see if his eating improves in the next 5 weeks. If not, we'll seriously consider the G tube. Do you have any experience with gastrostomy tubes? If so, I'd really value your comments.

Wednesday, June 29, 2005

Infusion made easy

Meropenem IV administration is as easy as it can possibly be. Meropenem comes in an "Eclipse pump". It's not really a pump, but an elastrometic infusion device. Meropenem comes in this little PVC bag that you hook up to the port of his Broviac. You open the valve and the bag starts to deflate and defuse the antibiotic at 100ml/hour. I still have trouble connecting syringes to his Broviac. I try and jam the two pieces together, but my hands jerk and I miss. Sometimes they careen off each other and touch him or his seat. He laughs at me, because it tickles. Then I have to wipe the ends with alcohol wipes all over again. I use many wipes in the process. But I've infused him twice now.

Tuesday, June 28, 2005

T's home!!

T's finally home!! C said a lot of nurses waved to T as he was wheeled out. T was grumpy and didn't swallow much barium for his upper GI scan, but I guess it went well enough. He fell asleep on the way home. I'm so thrilled to have his smiling face home!

Monday, June 27, 2005

Tomorrow or the day after and new interns

T continues to do well with the new antibiotic. But he's not coming home today. Coram couldn't send a nurse out to our house today. There's a shortage of pediatric nurses. A nurse has to show us how to administer IV antibiotics. Never mind that C's been handling T's Broviac for months and the nurse showed me how to administer the IV antibiotic today in the hospital. A nurse has to show someone at home. Apparently it was acceptable for a nurse to show me, and then I'd explain it to C even though I wasn't sure that my movement disorder would let me actually do it. It's a crazy system.

But the pump we'll get at home is different than the one at the hospital. The pump has a few buttons and you program it with the dose and the rate. Anyone who has programmed a microwave and can do simple math can operate it. In addition we already have a pump at home a feeding pump that works the same way. The pump was never an issue for me. What was an issue was how I was going to give T IV antibiotics without jerking, spilling or contaminating his Broviac. It seemed impossible. Fortunately I was wrong.

The pharmacy will give us premixed doses of the antibiotics. And I myself pushed saline into his Broviac and hooked up the pump with the antibiotic, and then flushed it with Heparin. The hardest part for me was figuring how to twist the two ends together. At first my jerking hands really couldn't quite get it. They were twisting away and I was worried I'd drop the Broviac cap and have to start sterilizing all over again. Then I realised that if I did drop it, I'd just have to wipe it with alcohol again. No big deal. The second time I also realised connecting a syringe to the Broviac was not a gentle process. You basically shove the connector into the Broviac to open the valve, then you screw it on.

So I'm comfortable going home with T now. However I'm sure our insurance wouldn't cover any of his followup care if we just left the hospital against doctors' orders. So he's staying at another night at the hospital Hilton. Another few hundred dollars billed to the insurance. T's working his way up to be a million dollar baby.

C or I have to be at the hospital tomorrow at 7:30am to get T's final discharge instructions. Then rush over to admitting and get him checked in for an Upper GI Scan at 8:15am. The intern thinks this is possible. We'll see. Then we have to be back by 2pm for the home health nurse.

When I met the intern, she had newbie written all over her face; the deer in headlights, dazed look of someone who's trying to deal with far too much information. The new school year just started and T was one of her first cases. T was a good first case by Saturday when she started working on him. He has a lot of stuff to keep track of. Yet he's no longer seriously ill and the only thing new about him from a doctor's POV was his antibiotics. I knew she'd have to get approval for any changes she made, so I could feel sorry for her. Today she looked more relaxed. She had survived the barrage of T information and had almost managed to get him home.

Sunday, June 26, 2005

Maybe tomorrow

Torin might be going home tomorrow....again The docs have decided not to send him home with Amikacin the troublesome antibiotic, because they can't get a therapeutic dose after 3 days of trying. So they're switching him to a different antibiotic, Meropenem which doesn't have to be tested for dosage and doesn't need to be combined with another antibiotic. I asked the resident why they hadn't switched him before. She claimed that the Oncology doctor didn't know Meropenem was effective against Enterobacter cloacae, the bacteria that infected his Broviac.

C did a google search on it and the info wasn't good. I took a look now and E-Medicine article's info on mortality and bacteremia(infection of bacteria in the blood stream)
was particularly scary. But he's doing great now!

When I was backing out from the garage on Friday, I banged the passenger side mirror into a pole. Normally the mirror bends if you hit the mirror going forward, but as I was backing up, it couldn't and smashed. Is it bad luck to break a car mirror? What do you think? The cover also came off. I was very annoyed, mostly because it has to be repaired within a few days. Just one more thing I have to do. The glass of the mirror (albeit safety glass) has shattered and the electronics to move the mirror are now exposed. The pole also made a large cream coloured scrape on the passenger side door. I won't fix that. It'll be a wonderful souvenir of T's latest hospital stay. And the wonderful garage. The garage with tiny spaces marked "compact" that SUVs park in, because the spaces not marked compact are usually full. And yes, I banged my more-compact-than-an-SUV Passat in a compact space.

Even if Torin gets discharged tomorrow, I'll still visit that garage many more times this week. I have to take Little T for various medical apts on Tuesday, Wednesday and Thursday.
Here's his schedule:
Monday - Renal ultrasound and consult with doctor (probably going to be done in-patient)
Tuesday - Upper GI Scan. No eating for hours = crabby Torin
Wednesday - OT apt
Thursday - GI Clinic

It makes me exhausted just thinking about it. Maybe tomorrow when he's actually home, I'll feel better about it. Or he'll still be inpatient, so I won't have to take him to his Tuesday apts. I'll still have to park in the garage though.

Saturday, June 25, 2005

Little T's going home?

Little T might be going home tomorrow! It depends on if the doctors can establish a therapeutic level of antiobiotics tonight. He gets the antibiotics at 1am and then it takes time for the blood results to come through, so we won't know until tomorrow morning. Knowing how these things go, it could easily get pushed back. When he had RSV, every day we were told he'd go home tomorrow, and a week passed before he went home.

He'll go home on IV antibiotics. That means C has to inject antibiotics into his Broviac. It seems a bit intimidating to me, though C has been taking care of his Broviac for months. When Little T went home from the NICU, the doctors were very adamant that all his drugs be given orally at home, even though he had a Broviac back then too. I guess we've graduated to IV and this means we're veterans now. That makes me feel both pleased and sad. Or maybe they're just desperate for beds.

His new ward is a double ward with two doors that has 4 beds. 3 of the beds house babies including T, and a nurses' station is in the middle, so it's quite noisy. I feel sorry for the lone little girl who's stuck with 3 baby boys, but at least yesterday and today she seemed too sick to care. Little T continues to look great. His blood levels have bounced back, so his white blood cell count and platelets are all normal now.

I've just about finished my piece for Brain, Child. It's grown to 3000 words. As with a lot of my writing, it started out dense and intense at 1500 words and has gradually lightened to something more humorous though still dramatic. It's almost done. I'm happy with it I just need my friend Jenny to read it and comment on it.

I also finally finished a first draft of my children's book. I read it to Special K. She sat on my lap the whole time I read it. That's something, because sometimes she wanders off when I read things on the screen. It flows. I can see illustrations in my mind when I read it. But it still isn't done yet. It doesn't have the life in it that my Brain, Child essay does. I guess I need a bit more distance from this latest hospital round. Though being in the hospital was useful for describing the sounds of the NICU.

Youch I just noticed the time. Good night.

Friday, June 24, 2005

Bug in the template

Now there seems to be a bug in the template that it puts lots of white space after the title of the first post. I've emailed about it.


I discovered that T is in Immediate Intensive Care. He's going to be moved yet again to another IICU room. This will make the 6th room he's been in since he was admitted on Tuesday evening. Oh, well he likes the ride. The one he's now is primarily for patients with neurological disorders. I said I could stay there then, except I've never been hospitalized for my myoclonic dystonia. His new room will be for patients with more general issues.

At least he's moving within the same unit, so they won't have to rewrite all his orders. Each time a patient moves to a new unit, they have to get new orders from the doctors who are in charge of that unit. So when T moved from the Hemo ward to the ICU to the ICCU, he had to get new orders and this was all within 24 hours. When orders get rewritten, things get left out like last night, the orders left out 150 cal of his formula. That's 150 cal out of 670 cal.

When my sister Saskia and I got to his room, he was smiling and cooing and kicking his legs. He moves around a lot more now. He does his best to rip off his wires. He generally gives the impression that he doesn't belong in the hospital. It's hard to believe how sick he was 24 hours ago. Though if he can move up that quickly, he can also go downhill fast too. So they're continuing to monitor him closely.

We had to leave all too soon so S could catch the train and our nanny could go to her other job. Unfortunately S probably missed the train. Our nanny wants to visit Little T this weekend. Isn't that sweet?

I worked with S on my piece for Brain, Child. She had some editorial corrections and some really good comments and questions. I'm reaching the point where I'm ready to submit it. I want to show it to a couple more people and then I'm done.

I'm waiting for K to wake up, so we can go visit T again.

Thursday, June 23, 2005

T turns blue and I blink

Thanks for all the well wishes! They definitely help.

When I got to the hospital, C told me that not doing well meant that his fever spiked and he started shivering, and his blood pressure plunged. First his feet started turning blue, then his body turned this mottled color. The resident put a bag mask on him and started puffing. C said she looked overwhelmed. Then she said "I'm going to call a code. And all sorts of people are going to come in. Don't worry." She called the code and some people rushed in. C thought "this isn't that bad." Then more people rushed in and filled the room. They put oxygen in him, and a drug to increase his blood pressure and he stabilized.

Sadly we saw a slightly less severe episode on Tuesday morning. Obviously we didn't know his blood pressure had dropped, but we both knew something was horribly wrong. I was about to call 911 when his colour started to return. I don't think this made it any less traumatic for C since he saw the whole thing again and it was worse. But looking at T lying sleeping peacefully, it made me feel better because he came through that time on his own and worse, because I could imagine it pretty clearly in my mind.

It's funny how I'll say "Oh I think it's a viral infection." or "He just misses his doctor." but then my actions reflect the actual situation i.e. that this is an urgent life-threatening situation. Like I called the Hemo clinic and spoke to his doctor who said to give him ibuprofen and wait an hour. Then called back after he turned blue and left a message. The nurse who heard the message understood exactly what I was describing. She told me "Based on what you said, you need to take him in right now." But his doctor didn't hear the message and said I could take him to the Hemo clinic or his ped. I was very clear that I wanted to take him to Hemo, even though if it was just a viral infection, he should go to his ped.

There's a part of my brain, the mother intuition part that understands exactly what's going on. But it doesn't tell the other parts, because it would make it very hard to remain calm and do what I need to do.

C and I both just read Blink, which describes how people "thin-slice" i.e. make a judgement based on a very small set of initial data. The nurse "thin-sliced" based on my phone message And I definitely "thin-slice" with my kids and act on it even if my more conscious brain is telling me otherwise. I didn't even know that I was deciding whether or not to call 911 until I talked to his hemo doctor yesterday. And if I had dialed 911, I'd have found myself calling with no conscious thought whatsover.

I spent the entire day with him. I didn't get home until almost midnight. He's definitely weaker and more pale, but he kicks his legs a lot more now. He used to just lie there and scream. He slept a lot. I tried to prevent him from playing with his Broviac and his monitor wires. We played some games of peekabo when he was awake and he played with his toy.

The Hemo/Oncology doctor who's responsible for the unit came by and said the words "out of the woods" "life-threatening" and "sepsis". I'm not sure if they wait to use the words "life-threatening" until after the crisis is over, or I just don't hear the words until afterwards. I think it's the former, because it's obvious that if someone's in intensive care that they have a life-threatening condition.

At 11pm he "graduated" to the step-down unit, which still has a 2:1 nurse to patient ratio, and is still intensive care, but not quite as intensive. But first he got transferred to a treatment room, because they ran out of beds. The nurses said it must be the full moon, because they suddenly had 3 unexpected PICU cases.

His minimum stay has been extended to at least a week.

C's at the hospital now and says Little T started smiling again. Of course this is a guy who smiled in the ER when his Kasabach Merritt Syndrome has returned. But still it's a good sign. I'm exhausted and supposed to be resting, because we have learned from hard experience that we have to take care of ourselves when he's in the hospital, or we get sick. But I did want to get this all down first.

Wednesday, June 22, 2005

Little T's being transferred to the PICU

When we went in, we found out that the blood they drew from his Broviac was infected with gram negative rod bacteria. His doctor said it typically comes from poop. She ordered a blood sample drawn from his body and they'll culture that as well. If it's negative then just his Broviac is infected, which she says is pretty easily resolved by removing his Broviac. Easily meaning a minimum of 3 days in the hospital, but up to 7-10 days if the bacteria doesn't respond well to antibiotics. If it's positive, then the infection's in his entire blood system. I think that's called sepsis and is life threatening. But I'm not sure. I haven't asked, because I don't want to know right now. For me, "maybe" and "I think" is easier than "yes" and "I know" when it comes to life-threatening. I used to think differently until T was born.

T's a "tough draw". The first lab assistant tried twice and dug around in his foot and then hand as he howled. I've had nurses dig and it really hurts! He's a lot stronger and louder than back in January when they last inserted needles before he got another Broviac. So I rejoice and cringe at how hard he kicks and screams. Then two lab assistants came as a team. After a lot of prep and some digging, they managed to draw only 1 cc of blood, barely enough for 1 culture and they're supposed to do two types: aerobic and anerobic. But the positive for the Broviac was only in one type. I forget which. So they can probably get away with just doing one.

C stayed the night. C and Little T had a rough night. T's blood pressure keeps dropping and he's not doing well, so he's being transferred to the PICU(Pediatric Intensive Care Unit). K's a little sick herself with diarrhea, so we probably shouldn't take her to the PICU. I'm waiting for our nanny to arrive so I can join C at the hospital.

Tuesday, June 21, 2005

T's back in the hospital for the 5th time

T's angel doctor just called and said "I have bad news. The blood culture taken last night has bacteria." So he's going to be admitted to hospital for the 5th time. They're going to remove his Broviac as well. We're waiting now to hear which ward he'll be admitted to. He just doesn't look that sick. It's so weird. Please pray for him/send healing vibes.

Another trip to the ER

Little T woke up screaming last night with a fever of 102. C had some problems with his Broviac the day before, so he called the hematologist on call who told us to take Little T to the ER. I stayed home, because it was 2am and K was fast asleep. Sadly we've been there a few times, so one of the residents recognised Little T. When they first took his temperature, it was 104. Yet it took them two hours just to draw his blood to see if he had an infection. Fortunately his white blood cell count was normal, so he probably just has a viral infection. Three hours later he was sent home. I'm sure the ER folks did their best. It's not their fault that our health care system is so broken that the ER is the only health care you can get at night.

I had to take him to the Hematology clinic today, so I cancelled K's playdate with one of her preschool friends.

As I drove there, I found myself getting angry at the gods. I had just started to relax about T's medical issues. I'd start to feel he didn't need my vigilance, because he was getting better. I started focusing on other things like his therapy, his feeding and my writing. And like a kick in the gut we have to go to the ER again.

It's not fair, I want to say. But then life isn't fair. I told myself the ways that life isn't fair that favour me. Like the fact that we have good insurance with no lifetime limit. The fact that his hospital is within easy driving distance. And we can afford a house in this area. We have one healthy child. And somehow C and I manage to get through most of this by supporting each other and continuing to build the foundation of our relationship, instead of chipping away at it.

I realise part of my anger stems from the fear that by focusing on my writing I somehow created this problem. Then another voice, a very sardonic voice says "Well, Thida your life has always been busy with a flair for the dramatic." And a thought flits by that perhaps if I created more drama with my writing, say by actually publishing something, it might crowd out T's medical drama. It makes as much sense as my fear. So I'm going with it.

As soon as we got to the clinic, he started looking better. Maybe he just missed his angel doctor. She examined him throughly and even cleaned his ears. She took a throat culture and ordered another blood culture. He screamed throughout then fell asleep and has been sleeping most of the time since. In fact he's sleeping on me now.

Monday, June 20, 2005

Juana Briones Medical Therapy Program Open House

K, T and I all went to an Open House of Juana Briones Medical Therapy program. I discovered T's been authorized for occupational therapy(OT) and not physical therapy (PT). He probably needs both. The CCS folks were all very nice, but I found it all rather stressful. I struggled to understand what was going on. It seems like CCS's current position is that his developmental delays are not due to his medical issues and therefore PT is not covered. They assured me they'll take care of him. I'll keep expressing concern until he gets what he needs.

My guess is that the gatekeeping is more harshly enforced, because the program goes to age 21. Early Start is only until age 3 and is for developmental delays only. We're really hoping he doesn't need Regional Center for delays, which takes over after 3.

I'm his mother, so I'm bound to think the best of him, but I really feel he's fine mentally. He seems very aware of his environment and other people. He expresses that awareness with different vocalizations. His opthamologist says his visual tracking is on track for his age and his vision's about the only thing that hasn't been affected by his drugs and frequent hospitalizations.

Sunday, June 19, 2005

Fathers' Day

My father's in England right now and the times didn't sync up for me to call him. But I thought of him yesterday and what he's given me. He gave me vivid memories of his own childhood. He shared his sense of childlike wonder and showed me how to keep that wonder into adulthood. He still yells with excitement. He still enjoys a slow walk with Kerensa to examine the rocks in someone's garden. He literally showed me the world. He took me all over the world from the slums of Calcutta to Machu Picchu and many many museums. He explained to me the mythology depicted in art. He always listens intently to me and asks lots of questions. Even the smallest things I do interest him. At my best, I listen to people like him. He's willing to try almost anything once, which has led to lots of interesting adventures. He's both an inspiration and a cautionary tale.

On Fathers' Day, we drove down to SF. Both kids fell asleep on the way down. We put them both in the stroller and walked to the SFMOMA. We found out it was Family Day, so we only paid $2 each. We walked to an arts and crafts activity where you were supposed to add rooms to the Winchester Mystery House using cardboard and fabrics. K slept on, so we just ate the chips and salsa that was provided. Then we went up to the fifth floor and looked at some conceptual art including a DVD montage of altered photographs of the Winchester Mystery House.

The most interesting piece I saw was a room painted with a paint-by number mural of the forest. The sound of flowing water filled the room, but instead of a beautiful fountain, it was a plain utility sink with the taps left on. Underneath was a box of rat bait. Piles of newspapers were scattered throughout the room with various articles on top about freedom and the lack of it. High up was a small window with prison bars. It was both a celebration of nature and a parody of how we celebrate nature.

Then we drove to Ethan's place for a tea tasting. Ethan ordered three tea sampler packs from Les Palais Des Thes a French tea company. The teas came complete with a little booklet that described all the teas. The booklet was the same size and general format of little French guidebooks. It appealed to me, because it fit comfortably in my hand and contained lots of glossy photos of tea. It gave the tea an added air of importance.

The teas had a surprising variety of flavours if you paid close attention. One had the aftertaste of scallions; Sarah said onions. I loved their Grand Lapsang Souchong tea. I hadn't realised Lapsang could be delicate. Everyone else but Simon thought I was crazy. Ethan gave me the tea. I'll try my best to save it until my parents return from overseas. Jasmine Pearls with its fragant delicate scent and taste was a lovely soothing way to end the tasting. After 8 teas, we were all exhausted from tasting and smelling so intently.

We walked a circutious route to avoid the hills over to Tangerine, another Asian-Fusion restaurant. One the way in we ran into Bill a college friend of C's. And he joined us for most of the meal. The food worked a lot better than at Sauce. I had a tender roast duck with delicious yellow curry sauce. It was very much like the Straits dish we used to have before the chef left for another Straits restaurant and things went down hill. C generously traded his duck dish for my rib dish. The waitress said the pork ribs weren't sweet, but in fact they were quite sweet.

We took the tram back to Ethan's house. K exclaimed with excitement at the twists and turns of the tram as it climbed the hill. Of course both kids fell asleep on the way home.

We didn't get back until after 10pm. And we still had a lot to do. We had to change Little T's Broviac dressing, change his tube dressing, insert a new tube, and prepare his formula for his night pump feeding. We also had to take out the garbage and recycling. We weren't finished until just after midnight. Even so C said "It was a good Fathers' Day." I'm so glad.

Saturday, June 18, 2005

An evening out with Sauce and an opera

On Saturday C and I had our first evening out in months. We dined at Sauce. It's a new restaurant and it was fairly quiet. The staff was pretty efficient and very pleasant. Unfortunately the food had problems. Maybe we just picked the wrong dishes, or maybe it just needs to work things out. The ingredients were all fresh and things were cooked properly, but the different tastes and texture didn't meld well together.

The concept of the restaurant is comfort food meets Californian Asian-Fusion cuisine. The theme ingredient a la Iron Chef was bacon. Now I love bacon, but bacon has a very strong flavor and can overwhelm any dish. My entree was tender warm salmon over a bed of spinach. The bacon in the spinach drowned out the delicate flavour of the salmon, so I ate the salmon separately. Unfortunately the bacon combined with horseradish dressing overwhelmed me. C's meatloaf was also wrapped in bacon, but it fared better. My starter, chicken soup, was delicious and subtle, but at first I thought it was bland. I was eating it with the bits of roast chicken that came with the soup. Unfortunately the roast chicken was very dry and sucked the taste out of my mouth. Once I set it aside, I enjoyed my soup a lot more.

Then we went to our first opera of the summer season, The Pearl Fishers It's one of Bizet's early works and it's no Carmen. The first half of the opera I kept getting distracted by the clunky plot and the clearly Christian metaphors and concepts with Hindu gods occasionally thrown in. I read part of a review in the program that said the relationship between Zurga and Nadir was all about Leila. Then the second half, the opera finally made sense and I was sucked into the opera. Warning: spoilers ahead.

The story was really about Zurga's love of Nadir. He has the "love that dare not speak its name." in the time the opera was written. In the first act, the gay couple are reunited and sing a tender duet about never parting. The words are a classic lovers reunited duet. When Nadir falls in love with Leila, Zurga's horribly jealous and makes Nadir swear not to see her again. He says he loves Leila too. Yeah, right. But Nadir breaks his oath and makes Leila break her oath to remain veiled at all times. And so Nadir condemns them both to death.

In the second act after the het couple has been sentenced, Zurga sings "One thought torments me: Nadir." He sings his anguish about Nadir; not one mention of Leila at all. He wonders how he can free Nadir. Then Leila appears to beg for Nadir's life and proclaims her love for Nadir. Zurga fumes with jealousy and rage. He says he wants Leila, but his assault is more violent and angry than loverlike. He's jealous, because he realises he's lost Nadir.

Then at the end, Zurga sets fire to the village, so Nadir and Leila can escape. He's killed for his crimes. As with many operatic heroines, he sacrifices himself for the man he loves.

I usually make it a rule not to read opera reviews beforehand. I find they color my views unfairly. I think a lot of opera critics miss gay and feminist themes in operas. I don't think it would have taken me so long to recognise Zurga's love if I hadn't read that review.

In my youth, especially in high school, I was a bit of a fag hag. Opera satisfies that desire. A lot of operas have gay lovers that often pass under the radar of the het audience and critics. I enjoy that. I also enjoy the juxaposition of older het couples and younger gay couples. I enjoy opera's drama and absurdity that allows a composer to explore the fundamental questions of the human existence.

Friday, June 17, 2005

CSA go away

I really can't deal with a CSA right now, I cancelled my subscription. I drove twice at 10pm (last night and Wednesday night) to go pick up the CSA. Both times I'd asked Special K if she wanted to go for a drive and she said no. A neighbor of the CSA house kindly brought my box in Wednesday night, but she didn't leave a note at the CSA dropoff and I didn't receive her phone message until after I returned home. Animals or someone had eaten some of my fruit. A peach had a bite taken out of it, and there were a couple of empty spaces in my box.

I emailed Ali at Frog Hollow Farm. Ali kindly agreed to offered to give me more fruit. I replied "I don't want you to replace my fruit, because the damage was my fault for not picking it up in time. It's just too difficult for me to go drive somewhere to pick it up."

Thursday, June 16, 2005

New draft of Brain,Child personal essay leads to more blogs entries

I wrote another draft of the personal essay I'm submitting to Brain, Child. I realised another theme was my body's ability to take care of my children, particularly feeding them. So I had to delete two of my favourite scenes. One happened on Monday, and the other was a memory triggered by the first, so I added them to my blog. Enjoy!

Which blogging site should I use?

I switched from LiveJournal to Blogger, because I wanted the following:

  • a reliable site - LJ seemed to go down a lot
  • a set of features that wouldn't go away - LJ disabled memories
  • a site that is likely to stick around - LJ has been bought by Six Apart which also owns Typepad

Both LJ and Blogger offer these features that I want
  • RSS feed
  • a site where you could browse from blog to blog
  • cheap or preferrably free

  • But I also want
    • A list of the last 10 comments displayed in my sidebar - The comments hack I have only displays that last comment in the main page
    • Trackbacks - They seem pretty cool
    I could install blogging software on C's web site, but it's not particularly reliable. We don't perform regular backups. Typepad seems to offer what I want, but the most basic package is $50 a year, which feels like a lot.

    Do you know of a blog site that might fit my desires? Which blog software/site do you use? What do you like/dislike about it?

    Wednesday, June 15, 2005

    Little T's in CCS Medical Therapy & Early Start

    Little T was finally approved for the California Children's Services Medical Therapy Program a California government program that provides Occupational and Physical therapy free of charge to children from birth to 21. We received an offical CCS card.

    I wish I'd known about CCS when I was a child. But then I might not gotten services anyway. It was a royal pain to get approved. His hospital sent the original request in October. And we've only been approved, several more steps away from actual therapy. Even though Little T clearly qualifies, his diagnosis didn't fit their standard list. I kept calling and Little T's OT did as well. Finally CCS reopened the case and then approved him.

    I took a negotiations class at Haas. The skills I've learned are invaluable in dealing with government agencies like Early Start or CCS, or even sclerotic customer service organizations. I used the methods described below to get a full cash refund from Fry's on a laptop that I had opened and returned after the deadline.

    1. 1. I keep a record of names, numbers and times. Otherwise they all get confused in my mind.

    2. When I talk to someone, I address them by name. I'm always polite but persistent. I need help and I tell them why. My voice has a tone of urgency and concern. That person has the power of information or is a gatekeeper. I want to give them the satisfaction of helping me. Most people get pleasure from helping someone who's appreciative. And I've found that polite requests for help are rarely refused.

    3. If the person can't help me, I ask for the name and number of someone who can. I don't end the conversation until a)I've either gotten the answer I need, or b)a date to call back to get the answer I need, or c)the name of a person who is supposed to give me the answer.

    For Early Start and CCS in particular, here's what I did.
    1. I made a request by calling their main number.

    2. In week or two, the government agency is supposed to send me a letter with a case manager who's evaluating his eligibility.
    3. I hadn't received the letter in two weeks, so I called and asked if he had an application open.

    4. I carefully read all the documents I've given. Often government agencies are required by law to do certain things which is outlined in one of the documents. The document is often faded with tiny type.

    5. I called the case manager and introduced myself.

    6. I used the method I described above to go through all the steps needed to get treatment for Little T.
      1. Evaluation interview or review of medical records
      2. Approval
      3. Referral to an agency who will provide the services
      4. Agency assigns a person who will actually treat Little T
      5. Person makes first apt to see Little T

    After 4 months and numerous calls to Early Start, they sent a wonderful therapist to our house. The scheduler initially gave us an initial evaluation interview that would have pushed things out too far past the 45 day deadline. I said "I read in the Patients Rights and Responsibilities that the IFSP must be completed with 45 days of the referral. If I have the interview two days before the deadline, that doesn't give enough time to complete the IFSP, does it?" She said no, but this was the date she had. I asked who managed the schedule and she gave me the name of her supervisor. I called and got an earlier time.

    And now you know one of the many reasons I don't work outside the home. It's a job in itself to get services for Little T and manage his appointments.

    Do you have any tips for dealing with government agencies? Please comment here.

    Tuesday, June 14, 2005

    Little T the ripper

    Little T ripped off his Broviac dressing and his NG tube this morning. We all loved seeing his sweet face without tape today. And we're proud of his fine motor skills and wiliness. But tonight, how he howled with outrage when C put it back in!

    What's the most annoying thing you've ever had on your body and how did you cope?

    Little T ate 5 oz today, a new record since the NG tube. Still far short of what he needs to eat, but the zinc still has two more weeks to work its magic.

    Special K ripped off her clothes and spent most of the day naked. She had a couple accidents. She still lacks enough body awareness to potty train, but she's getting there.

    Google Guessing Game

    I enjoy playing this Google Guessing Game. You look at the images and try to guess what someone typed into Google to get those images.

    More futzing with my journal

    I completely rewrote my intro and added most of my old live Journal entries. I also added some things I wrote while Little T was in the NICU. Enjoy!

    Monday, June 13, 2005

    Writing shame and self-acceptance and a new reading group

    My sister and I talked about my book proposal and she gave me some great suggestions, including getting published in magazines. She told me I had to market myself as well as the book. "Why you should write this book and no-one else? What makes you an expert?" I replied "Anyone could write it. I'm not an expert." Then I realised I am an expert on coping with stress and difficulty. Mercifully few middle class USA mothers deal with what I do everyday. This may seem obvious, and I'm pretty sure other people have told me before, but sometimes it takes my sister to flip me around so I can see.

    She asked me "Why don't you write about your own life?" And I felt scared and naked. I thought I was done denying I had a disability. And I had purged the shame, but no. This blog helps, because most days I want to write something if I have the time.

    I'm writing a personal essay about shame and self-acceptance to submit to Brain, Child. If you're interested in reading it, please join the reading group where I submit drafts as I'm working on them. Please join the readcornes Yahoo Group. I just created it so it's very small, and you can just read and not comment, though I always welcome comments. Enjoy!

    Apricot jamming is so much fun

    Making apricot jam was a blast. Jenny, Laurel and I chopped 24lb of apricots and chatted. C and I searched on the Internet for some recipes, but in the end we followed the recipe on the pectin box. The directions were peppered with EXACT. We measured as exactly as one can using cups. Maybe we did it all wrong, but it was surprisingly easy. You just had to keep stirring and pay attention when it started to boil. Definitely not something you can do alone with two children, but "this was like a quilting bee!" Jenny exclaimed.

    We mixed apricots, pectin and lemon juice and stirred it until it came to a rolling boil. Then added the sugar and stirred again to a rolling boil and let it boil for EXACTLY one minute, then immediately laddled the jam into jam jars. We boiled the jam jars afterwards to be safe instead of turning them upside down. We tasted the leftover jam and it was just right -- sugar sweet and tart with apricots and a hint of lemon. I hope the jam in jars tastes as good.

    My friend Robert claims the right equipment means the difference between a fun experience and a difficult one. I agree with him about jam making. We bought a Back To Basics Home Canning Kit. The funnel contained the boiling sticky jam and made decanting a lot easier. The jar lifter saved our fingers from scalding in boiling hot water. The jar opener gave Special K practice with chopsticks. I thought C was brilliant to think of OSH for canning supplies and so did he. Then today a friend pointed out that it is Orchard Supply Hardware. Doh!

    In the first batch, large pieces bobbed to the surface on the boil. So we chopped the rest finer. Jenn displayed her knife skills while Jenny and I watched in awe. The children were louder than her chopping.

    Sylvia and Special K played princess. They found "princess shoes, princess necklaces, princess dolls." They dressed up in princess clothes.

    We feasted on a delicious supper. We roasted pork tenderloin with apricot and Mary Anne's curry rub. My sister steamed squash and mashed potatoes. Jenny whipped up apricot cobbler.

    Little T gets redressed

    C came home and put another dressing on Little T's Broviac. He slept through most of the procedure, then woke up calmly and looked around.

    LittleT ripped off his Broviac dressing!!

    Little T's feeding tube was tucked into his onesie. I give him some Tylenol through his feeding tube and left his onesie open. He smiled and kicked his legs in the air. I walked over to the sink to rinse it down with water. When I returned, he was holding his Broviac dressing in his right hand! In a total panic, I called C. He told me he'd come home right away. In the meantime I should cover his Broviac with a gauze pad and Tegaderm. As I carried him to the bedroom, he started pulling at his Broviac. I was afraid he might yank it out. I grabbed his hand as I looked for any Tegaderm small enough to put on without cutting. None was to be found, so I made do with skin tape and a gauze pad. Please wish him luck and protection that this doesn't cause an infection in his Broviac It would send him back to the hospital.

    Gymnastics, Ballet and performance

    I originally wrote this as a part of a personal essay I'm submitting to Brain, Child, so the tense is different than usual.

    My body tenses as I watch my daughter round the circuits. After only 4 weeks of gymnastics class, she will not perform well on the quarterly assessment. What I was thinking to put her through this? My daughter jumps on the trampoline and laughs when told to freeze. She jumps up and down and claps her hands while waiting her turn. She performs a front flip with some coaching, but she clings to the teacher on the bars. Does she know she’s being tested? Doesn’t she care? Class is over. The teacher hands my daughter a purple ribbon and the test sheet with a “Great job.” I’d heard that so many times. And everyone gets a ribbon. I want to spare her being cut, because she didn’t made the grade.

    As a child, I loved ballet class. My arms formed awkward angles due to my disability, myoclonic dystonia. But my lower half felt graceful doing ballet.

    For the year-end recital, the entire class would perform a simple dance together. I was proud of my costume, just like the others, but made with my mother’s own hands. My leotard slid smoothly across my back and my tutu jounced as I glissaded.

    A day before the recital, my ballet teacher called my mother: “I’m concerned about your daughter performing. I don’t want to feel her uncomfortable.” My mother assured her, “She’s fine. She’s looking forward to it.” After a long silence, my ballet teacher said. “Well, I’m worried she’ll feel embarrassed.” My mother responded sharply, “It sounds to me like you’re embarrassed, not my daughter.” My ballet teacher softly replied, “Yes, I don’t want her to perform.” I never took ballet again.

    My daughter drops the paper without a glance. Then she strokes the ribbon. Purple is her favorite color. I pick up the test sheet and stare at its expanse of empty checkboxes littered with few stars. My daughter chatters excitedly, “I love gym! I want to do it again!” The other kids in her class are older and bigger and have taken gym for much longer. She tries to imitate them and if she can’t do something, she just waits for the teacher to help her. I want to defend her, but she doesn’t need it. She seems happy to try her best.

    Sunday, June 12, 2005

    Organic cigarettes

    I frequently buy organic products and if I smoked, I'd probably buy Natural American Spirit organic cigarettes complete with an image of a Native American smoking.

    C found their glossy flyer next to the Palo Alto Daily. On the back it states

    I'd read this and say "Well at least I'm not smoking additives as well as tobacco." The flyer also states "Natural American Spirit was created based on our belief in the traditional American Indian usage of tobacco - in moderation and its natural state." Great justification for smoking, except the image on the cover features an American Indian smoking with a traditional long pipe, not a cigarette. As C pointed out, it's also reminiscent of a drugstore Indian. I'm not sure I'd like that image if I were Native American.

    I tried going to the Natural American Spirit web site but before I could enter, it asked me if I was a smoker. I answered no and received the message "You must be a smoker and 21 years of age to enter this site." I guess NAS knew that if I saw their addictive ads, I'd have no choice, but to smoke! Now I had a difficult dilemma, should I lie to get into the site? I asked C. Little T started screaming. But C came back and said "no" So if you don't smoke, you'll have to face this dilemma yourself. If you do smoke, you can try the all natural accupuncture to quit smoking.

    Friday, June 10, 2005

    A mother moment and a book proposal

    I was struggling to make formula for Little T. I jerked and spilled powder all over the floor and countertop. "Argh!" I screamed. Special K walked over and said sweetly "It's okay, Mommy. Do you want a hug?" Of course I said yes. She hugged me and I felt better.

    Just then my sister called. She told me to write a book proposal. Doh. So I'm writing one. Sometimes I need to be told the obvious.

    Our nanny is staying!!!

    Our nanny is staying!! We offered her an extra $2/hour.

    New blogger template hack

    I found this recent comments hack and added it to my blog template.

    Thursday, June 09, 2005

    Dancing To Lose Weight

    My friend Mary Anne blogged how she gets her daily exercise with Dance Dance Revolution. I bought Dance Dance Revolution a while ago to get myself to exercise, but the mat never worked properly. Today I ran across Daily Dancer's Blog which features his first video. The Daily Dancer has lost weight since his first video.

    I still have my post pregnancy belly and I need to start exercising again. Maybe the mat didn't work, because my PC was too slow. I've since upgraded my PC, so maybe now it'll be able to keep up with my lightening fast dance moves! ;)

    Leather anniversary gift

    This morning at breakfast C gave me an anniversary present a few months late. He had given me a DVD on our actual anniversary of February 23, but it wasn't in theme. We give gifts based on the theme of the anniversary either traditional or modern. Quite silly, but it's led to gifts we wouldn't otherwise give or creative interpretation of gifts. This year I gave C a lovely leather jacket. And he gave me a leather case, which contained a Canon PowerShot SD400 digital camera. It's much smaller than our old Powershot S30 and takes pictures much faster too. I love it!

    Using my new camera, C. took some videos of Special K jumping up and down and she hammed it up! She kept asking to see the video again and again and shrieked with delight at seeing herself. Half an hour later she said she was tired and needed to go to bed. Maybe we should take videos every night!

    Wednesday, June 08, 2005

    We be jamming apricots

    On the way home from the hospital, I picked up my Happy Child CSA. It's the first time we've actually had fruit from Frog Hollow Farm Some mothers on the PAMP email list raved about their peaches, but they just tasted okay to us, as did the cherries. But it's still early in the season.

    I like the idea of having fresh produce direct from a farm, but so far I've been disappointed with boxes. I tried Planet Organics and I thought the produce was lower quality than at our local farmers' market. I grew up with a mother who always shopped at the local farmers' market. And we mostly buy produce at our local farmers' market, because it's cheaper, more flavourful and C enjoys walking there every Sunday. I feel if we're going to make the effort to cook, it should turn out well and the best way to guarantee a decent meal is to use the most flavourful ingredients.

    We're very lucky, because the best organic tree-ripened apricots I've ever tasted come to our local market from Needmore Farms for four short weeks. I dream about their orange fruit kissed with red. Your teeth sink easily into the fruit, rewarding you with the sweet tart juice flavoured with a hint of apricot flowers. Their first apricots of the season just arrived on Sunday. And C. didn't buy enough so we scarfed them all down by Monday.

    However C ordered a box of "apricot jammers" for this Sunday. And I've organised an apricot jamming session with two of my friends. For someone who hardly cooks it's a huge effort, but I'm salivating just thinking about those ripe apricots oozing with juice.

    We also buy amazing magic brown mushrooms from Far West Fungi. No, not magic as in psychedelic. I mean magic like you find in fairy tales. You put these unassuming small brown mushrooms in any dish and it tastes like a gourmet meal fit for a king!

    Last chemo ever?

    Little T and I spent another afternoon at the hospital. Just as long, but half as exhausting, because I know he's making progress.

    His hemangioma has shrunk quite a bit and his hematologist says this may be his last chemo treatment today. It hasn't quite sunk in yet. And after January's relapse, I'm not ready to believe that the chemo and steroids are over. Little T's hematologist showed me how his hemangioma appears smaller than before his relapse.

    As usual Little T smiled hugely at his hematologist and even cooed at her as she unwrapped his arm. She remarked that he'd never done that before. I agreed and added that he used to cry when someone unwrapped his arm, but never for her.

    He has gained weight(6452 g) and height (60.3 cm) though his head's the same size at 44.5 cm.

    Then we walked over to the GI(Gastroenterology) clinic. I had a much nicer interaction with the GI Nurse Practioner (NP) this time. I told her we were feeding him 150ml via bolus just before he goes to bed and then 450 over the night for a total of 600 calories. He eats 0-2 oz formula and 1-3 tsp baby food per day. She merely replied to do the best I can and that the nutrionist would talk to me. So I guess she'd decided to stay out of the whole calories issue that got her in trouble last time. Good.

    He's still not gaining weight at the rate of a normal baby his age. So the NP prescribed feeding therapy. And then she carefully introduced the topic of switching him from an NG tube the feeding tube that goes down his nose to g-tube, a feeding tube which requires surgery to insert a tube in his stomach. The G tube doesn't irritate the throat and esophagus and exacerbate reflux, which could be causes of his lack of eating. But she also held out the hope that his lack of appetite is due to low zinc. She said it will take three weeks to see if the zinc will increase his appetite. Otherwise his blood tests showed that he has no allergies and normal blood levels, except for very slightly elevated T40(thyroid levels). She said they'll check his T4 again in 2-3 months.

    Then I drove to Jenn's house and Jenn told me that Special K was very sweet and independent. I said thanks. Right now she's clinging to me on my lap and whining. But it's true that I'd rather she behave well for others than for me.

    Tuesday, June 07, 2005

    Prius envy

    It seems like everyone around us is buying a Prius! One of the mothers in my book group has the original one. But this round of Prius envy all started when my friend Andrea drove me in hers and showed it off to me. I had no idea the new Prius was a hatchback! I love riding hatchback. I've developed a serious case of Prius envy. Then my friend Jed blogged about his shiny new Prius complete with pictures. Our next door neighbours are buying one. Another friend talked to me about buying one.

    If the new Prius had been out in 2002 when it was time for us to buy a 4 door sedan, we'd have probably bought a Prius. But the old one was a little too small in girth for two car seats. We're waiting for the Toyota Sienna hybrid minivan "expected in 2007" according to Hybrid

    But of course on the Internet, you can always find folks more obssessed than you. A google search of "Prius envy" revealed a Prius fan site complete with videos, photos and a log book with over 200 pages, which asked the question. "Do Hybrids save money?" and as part of the answer, another question "Why must you be rewarded (save money) by using less resources and polluting less?". My answer is because we live in a capitalist society where things are valued according to money. The real question is: Why are gas and clean air so undervalued that owning a Prius is more expensive than owning a regular car? I believe gas and clean air and a lot of other enviromental "goods" are undervalued due to government subsidies to industries, and regulations that in reality require industries to pay only a fraction of the true cost of cleaning up their pollution.

    But we'll drive our Passat for many more days, because VW fixed the trunk latch under warranty. No more dinging!

    I'm a lactivist

    C send me this NY Time article about Lactivists Taking Their Cause, and Their Babies, to the Streets Sadly I don't currently breastfeed due to Little T's feeding issues. But I have breastfed Special K and Little T everywhere. You can't control when or where a baby's hungry. I never felt dirty or embarrassed breastfeeding. I've never received any comments or dirty looks or been asked to stop. Most of the time the world seemed oblivious to the fact that I was breastfeeding.

    Maybe it's where I live. Maybe it's because my Burmese mother taught me that breastfeeding was normal and natural and I watched both of my siblings breastfeed. Or maybe it's because I'm half-British and so used to doing things discreetly. But I'm a lactivist, because I believe that women should be allowed to breastfeed in public.

    One thing did bother me. The article states that some lactivists compare public breastfeeding to gays holding hands. Once when I held hands with a woman, I got a shocked look. So the reactions I've received personally are the same. And in some states both can put you in jail. However I've never heard of a woman being beaten up or had her life threatened for breastfeeding in public.

    Comment away!

    I just opened up my blog comments to anyone.

    Our Passat chimes ding!

    Our Passat chimes ding, a fairly pleasant high-pitched single electronic bell sound. Unfortunately it closely resembles the sound of the main monitors in the NICU where Little T spent his first 6 weeks. And it dings a lot, so it grates on our nerves. The trunk latch is broken, so when the car hits any kind of rough patch, the trunk opens slightly and the Passat chimes a warning.

    So this morning we took our Passat into our local dealership. There, I discovered there's yet another recall on our Passat -- three in three years. They're performing a software upgrade on the TCM, a computer module involved with the transmission. I'm never getting another Passat ever again.

    Monday, June 06, 2005

    I'm crushed, because we lost another nanny

    We've had a really hard time keeping a good nanny. When I tell friends my nanny stories, they say we've had really bad luck.

    Our previous nanny seemed great on paper and had wonderful references, but she hadn't worked as a nanny in a year and a half. And in that time, she worked in corporate America and probably developed a drug problem. She came to work all spacey and with dilated eyes. Sometimes she couldn't follow simple directions. C said he thought he smelled weed on her a couple times. The final straw was when she fell asleep in the middle of the floor while my daughter literally jumped next to her and exclaimed "I'm a kangaroo!".

    The nanny before that was a NICU nurse from Guatemala. She spoke very poor English, but had glowing references. I was apprehensive, but willing to work with her. Then a couple mornings after she started, C failed to turn off the stove properly and it leaked gas. After a few hours, the downstairs filled with gas and reeked of sulphur. Somehow the nanny failed to notice and when I tried to explain what happened, she didn't understand.

    Finally we found a wonderful nanny about two months ago. Now she's leaving, because she wants to clean houses instead. She says she's quitting all her nanny jobs. Cleaning houses pays more money than we can possibly pay her. We pay $15 an hour. And she needs more money.

    I'd just crawled out of my well of sadness and now I find myself getting sucked back in. I start to feel hopeless that we'll find a good nanny who'll stay with us.

    My daughter's a sweet, affectionate, talkative and outgoing 3 year old, and it's relatively easy for me to find babysitters, nannies, friends to look after her. She literally runs around a lot and likes to go for walks, so she needs someone with a bit of energy.

    It's Little T who's more challenging to find a nanny for. As I've written many times before, he smiles and laughs a lot. I also wrote how he won't eat. He also has reflux and his arm hurts sometimes, and then cries. Some people we interviewed were clearly put off by his medical issues. Now his feeding tube provides an easy visual cue that he's not your typical baby, and makes it easy to weed out people. However what I haven't written is that he's functionally a 4 month old. He can barely roll over, so he still likes to be held a lot. He's also slow to warm. He's been handled a lot by various doctors and nurses and he has separation anxiety. Therefore he cries a lot for anyone who looks after him the first few times. He cried for the first 4 times with our current nanny. Then he started smiling at her and now he's pretty content with her.

    So Little T needs someone with a lot of patience, usually found in an older person, while Special K needs someone with more energy, usually found in a younger person. So it's a challenge to find someone to look after both of them. I need that break a nanny provides. I don't know how I would have coped without a nanny when my hormones crashed after Little T abruptly stopped breastfeeding. I'm not sure how I'll cope now. I'll manage somehow. I just hope the universe will see fit to give us a good nanny who stays. Goodness knows that my human efforts have failed so far and I've tried my best. I'd really appreciate any good nanny vibes you can send my way.

    Saturday, June 04, 2005

    My advice: keep a notebook/journal of your child

    In case someone's reading this who has a child with medical issues, I'll sometimes share advice that I think might be helpful. Since the day Little T was born with complex medical issues, my husband started carrying around a notebook. We record when we meet with someone, an outline of our discussion and also any changes/observations about our son. Now that we're home more, I've switched to an online journal. For us, it's simply a matter of making sense of it all. We have a lot of information thrown at us, and at times we're incredibly sad and stressed. Without a written record, we literally couldn't remember what was said to us, or what happened a few days ago.

    In the beginning some of Little T's doctors and nurses commented on it, and it seemed to impress them. It helped us seem better prepared and more involved parents. I think this may have contributed to better treatment, since so far we're pretty happy with the level of care we've received.

    Also we now have a pretty good record of his history. Sometimes we go back and look at how bad things were to see how far we've come.

    I also use an electronic calendar with all his apts, reminders about following up on lab results, ordering medical supplies, taking regular photos etc.

    If your child has a physical condition, I also recommend taking photos or video at regular intervals. Many doctors don't do this as normal part of their practice, but we've found it really adds a lot of useful info. If understanding size is important in your photo or video, it also helps to take it with a reference object. In our case, we take a photo with our child next to a DVD case.

    Barbie's panties and parties

    Unfortunately C. redeemed Barbie in Special K's eyes by pointing out that Barbie's gray area isn't genitals, but panties. And when I looked closer, I had to admit Barbie shows a hint of a V in front, so I guess she has a vulva under her panties. As soon as Special K heard that, she started playing with Barbie again.

    Barbie loves parties, because Special K took her to both parties we went to this weekend. At both parties, Barbie has almost been left behind and I've had to find her. Then adults at the party ask me "Is that your Barbie?" Perhaps I look possessive of it. I reply "Yes, actually it is." and then tell the story of how I got it as a housewarming gift.

    Thursday, June 02, 2005

    Little T drank 2 oz today! And lunch with Special K

    Little T drank 2 oz! I jerked some, but he drank anyway. Our nanny also got him to eat about 3 tsp strained carrots! Hooray!

    I suggested we all go for a walk and that Special K and I would eat out. Special K insisted "Just us two. You and me, Mommy." So Special K and I walked together downtown in the lovely spring day, the sky a picturesque blue, the birds singing. Special K showed me flowers, the joy of stepping on rocks and wading through thick grass. I lived in the moment, grateful that I had a beautiful healthy happy daughter. At the nearby pub, I ordered two burgers. Special K was thrilled to have her own hamburger, though she didn't eat much of it. We chatted about preschool, Barbie and the other people in the restaurant.

    Especially when Little T was in the NICU, folks would say to us "It must be hard with two." I would often reply "No, Special K often lights up my day and reminds us to be joyful." Lunch with Special K made me happier than I've felt in days.

    Barbie's butt and vulva

    "What's wrong?" Special K asked worriedly as she showed me Barbie's butt. Barbie's butt is not flesh coloured. Instead it's grey with the letter B stamped all over. "Barbie's butt has the letter B stamped on it." I explained to her. "Where's her vulva?" she asked. I said "She doesn't have one." We both looked and there was no crease. "She has a butt crease, but not a vulva." I explained. She asked "Does Barbie wear big girl underpants?" I replied "I guess not." She immediately put Barbie aside and started to "read" a picture book.

    Special K loves Barbie and recycling

    I had a dirty little secret in my garage closet -- a Barbie doll that a 4 year old girl gave me years ago as a housewarming gift. The 4 year loved Barbies and thought it was the perfect gift. "Barbie!" Special K exclaimed when she saw the box or rather the Barbie logo. She couldn't see what was in it. She identified it solely by the Barbie logo. "It's for me?" she asked joyfully. Well, who else was I keeping it for? She immediately wanted to play with Barbie. "I love Barbie!" she declared. How the hell had she learned to love Barbie? Then she asked "Is Barbie married?" I said "No, but Barbie has a boyfriend named Ken." She frowned. "Barbie is married. She has children." And sure enough the package insert displayed a picture of Barbie dressed as a bride and another of Barbie holding a baby doll.

    Me: I don't like Barbie.
    SK: I like Barbie. You like Barbie.
    Me: No, I don't like Barbie. She has funny feet to wear high heels.
    SK: I like high heels.

    She looked over the package insert carefully.
    SK: What are these Barbies called?
    Me: They don't have names. They just have numbers.
    SK: Ohhhh, these are all the other Barbies. I'm taking Barbie on a picnic.

    Was that another idea from Mattel? I tried not to think about that one too much. She went to our backyard with Barbie and some yogurt. My job was to sweep the spiderwebs off her playhouse and chairs. Then I figured out that she could sweep them off herself. She swept off the remaining cobwebs then sat outside eating her yogurt with Barbie. After a few minutes, she walked back inside, saying "Barbie and me had a great time."

    Just as I was being to think she might be doomed to a life as a pawn of the patriarchal corporation, she asked me "Can I recycle this?" she asked pointing to her yogurt container. "Yes if you wash it." I replied. She carefully washed it in the sink, then asked me to help her put in the recycle bin. Funny how she can scare and stun me, sometimes at the same time.

    Wednesday, June 01, 2005

    OT, Hand and more hope

    Little T showed off his rolling at his OT apt. His OT said he's making good progress. He pushes down now with both feet. He exerts a little pressure with his left wrist. He sits up better.

    His OT suggested putting solid food into his cheek pouch. It takes more effort to spit it out. And it does help get more solids in him.

    Little T's hand doctor said he was doing so well that he didn't need to see Little T for 3 months.

    I bought more baby vitamin drops and small jars of baby food. I feel more hopeful today, because I can see tangible results from tube feeding.