This journal has moved to waterowl I prefer the name Water Owl. I didn't know you could change usernames.

Little T started screaming again just now. That reminded me of last night, which I had put out of my mind. Last night we figured out at least one reason Little T was screaming yesterday. Castor checked Little T's Broviac dressing and a nasty red rash and some fluid was underneath. It looked like some vomit had somehow gotten under the dressing and his skin was irritated from the acid. Of course we didn't know that for sure, and Castor didn't want to remove the dressing in case it was an infection. So we called the Hematologist on call. He told us to take him to the Day Hospital, which was open until 10. What a relief we didn't have to go to the ER, which would be $100 and is also a huge germ factory.

My mother's intuition was so sure that it was just vomit that I didn't even go with Castor, but instead stayed home with Special K so she could sleep. Of course she didn't sleep very well, and is very tired now. And it was just vomit. Though the vomit left on his skin must have been very painful. When he vomits on my skin, I have to wash it off right away or it burns terribly. And I don't have baby skin. Sweet easying guy that is, Little T wasn't screaming all the time, just now and then and he was soothed by his binky.

Anyway I checked his Broviac just now and it was fine. So there's another reason he screamed just now. Looks like he's just tired and very frustrated he can't put his Binky in his mouth himself.

This morning I got my first ever pedicure with my friend Jenny and it was wonderful!!! Perhaps the best thing was I got to sit down for an hour and have someone look after my poor neglected feet. I put my aching feet into a warm whirling foot bath or foot spa. I got a warm yogurt massage of my legs and then a nice rub with hot stones. And after a toe trim, my toenails were painted a nice bright plum. For the first time in my life, my toes look beautiful. I keep looking down at my feet in amazement. Jenny says my toes look like candy. It made me feel more beautiful. I feel like I'm slowly emerging from the cocoon of Little T's pregnancy and constant visits to Lucile Packard. Now I have a new dream!! I have a dream that one day I'll be able to get a manicure. My disability is weird. It doesn't affect my lower body at all, so a pedicure was no problem, but I jerk too much to get a manicure. But someday I'll find the right drug, so I can!

I just decided to reduce clutter in my life. Well the truth is I decided again. However this time I think I have a better system. Namely if I buy something that's going to stay in my house i.e. it's non-perishable, not immediately diposable like diapers or tp, and not a gift. I have to find three things to give away or put away until Little T gets older. When Little T gets older, I can bring those things out, but then I have to give away 3 baby things. I just had my first test today -- a trip to Target. And so far so good. It made me think about whether I really wanted or needed it, because I value my time more than money and it's a little bit of a pain to find three things. So I didn't buy some snack containers.

So here's what I bought and gave/put away:

a size 3 soccer ball for Special K to learn how to kick. She's going to a soccer class later this summer -

a wooden train she never plays with

an annoying Elmo car that ran out of its batteries

a sponge car she used to love, but now never plays with

a large water bottle with measuring lines and a wide mouth for mixing up Little T's formula -

a Haas water bottle with a hard straw that hurts my mouth

a KAWL plastic coffee holder with an opening in its lid so I can spill it if I jerk

a honey bear sippy cup that's incredibly annoying to clean

The irony is that as I was making up this list and feeling very pleased and proud of myself, a delivery man on behalf of Coram called to deliver -- yes you guessed it more stuff!! Well at least it's formula so I don't have to give away more stuff.

It's been a while since I updated this. A lot has happened and much of it has been very difficult to deal with, let alone write about, but it's time now. Maybe I'll go back and write some post-dated entries. Maybe not. We'll see. So what's going on right now? I'm sitting in my family room while little T is trying to sleep. Periodically he wakes up and screams. He struggles to find his binky. One of his new tricks is putting it back in his mouth. Sometimes he can put his binky back. Sometimes I put his binky back. I'm really glad he can scream now. For months he had a sort of raspy dying man wheeze. Earlier I called his eye doctor and gave him the number of our pharmacy, so he can get different antibiotic eye ointment. His left eye's infected with staph due to a blocked tear duct, one of his more minor medical issues. He snores really loudly. Special K's at preschool.

I dropped Special K off at Laurel and Sylvia's house and spent another exhausting chunk of time at the hospital. It's amazing to me how draining it can be when on the surface it appears that I'm just sitting around and sometimes talking. However as with almost anything to do with Little T, it's not that simple. He had 2 apts today. The first was with GI (gastroenterology) and the second with Hematology. Poor Little T fell asleep every time we waited, but only once protested when he got woken up.

Little T feel asleep in the car on the way over. He got woken up to be weighed. But he didn't protest much. Well, no more than he usually does at being weighed. Perhaps he was stunned at his weight gain of 6.3 kg. I thought this couldn't be right. He weighed 5.9 last Tuesday, and a 400 g increase would be incredible for a baby whose greatest weekly weight gain had been 150g. And I was partially right. More on that later. Little T was also measured at 58.5cm. He's grown an entire cm in a month. Better than no growth from the previous. His head has grown from 43.4 to 45cm. His head's always grown from month to month, giving me hope that the steroids haven't completely ruined his brain. Keep up that head growth!

Then I met with a GI nurse practioner. She immediately asked for little T to be reweighed. His new weight was 6.25kg. He peed in his diaper in the five minutes since he was last weighed. So I suppose that accounts for the .05 kg difference. Then I had to recount his entire medical history concerning GI issues. He's had reflux since birth. It's sad to think that this was Special K's biggest medical issue as a baby and for Little T, it's an issue so minor that it's taken us 8 months and it getting worse for us to be able to deal with it.

Here's his GI background in not so medical terms. We put an NG tube down him 6 weeks ago due to poor weight gain. A week after the NG tube, he started vomiting after every feeding. Being the cheerful guy he is, he only fusses a little, then you can hear his stomach heave and the liquid start to come up. He vomits then often smiles. What a relief! He doesn't seem to mind that his clothes are now drenched in vomit. But he's outraged that I change his outfit.

Unfortunately he also stopped eating and breastfeeding cold turkey. My hormones went crazy and I tried pumping for a while. But somehow even with everything we've been through, the vomiting and lack of eating is very upsetting to both Castor and me in a primal way. Baby vomit, no food, very bad, very bad. One day after he had vomited 3 times in a row and covered a sofa cushion, I started crying. I was so upset. I felt I just couldn't take anymore. And I felt so helpless and stupid that I couldn't feed my own baby. I've never felt like this when he gets chemo or any other time. I guess these are more abstract issues to deal with, but every animal knows that vomiting is bad. I was convinced that he was losing weight, but it turned out that he was in fact gaining weight, slowly at first, but then 50-100g per week. So we have a baby who gets all his nutrition via formula poured down a tube that goes through his nose into his stomach.

The NP then immediately put my back up by suggesting he was "overfed". She said his weight to height ratio was in the 91st percentile and that he looked fat. I pointed out to her that his weight today was one data point in time and that it was a different scale, different time of day, etc and it didn't seem right. She reacted like the scale had to be accurate. I didn't get into a debate about calibration and at little T's weight, the differences in scales can be greater than his weight. I did add that he had been on massive amounts of steroids and was only taken off them last week. As you may know (though hopefully not from personal experience) steroids linger for a long time and if you don't exercise like Barry Bonds, steroids can make you look fat. For months, Little T had the fattest little face, but his legs were like toothpicks. I added that Special K would get pretty fat and then start growing. And most importantly he had only just started gaining weight and growing and it was after we started trying to give him 600 calories a day with the help of the NG tube. And trying means that it's usually less than 600, but at least 500. She said 600 calories might be too much. I said the nutrionist had said he needed at least 600 calories per day. The NP said the nutritionist might have made a mistake.

Now I've only met three medical nutritionists, which is three too many, because I had met none before Little T was born. Not that they're bad, but it's better to have a child who doesn't need one. But anyway their official title is registered dietician. To me, the word registered (except with the word nurse) conjures up a little accountant with a calculator. And indeed they calculate precisely how many calories your child needs based on his weight and age. Grace the nutritionist he's had in Hematology calculated Little T needs 600 calories. She also calculated how many calories Little T was getting. PreNG tube, he was primarily breastfeeding. Even so she noted the number of times he breastfed, calories per oz in breastmilk and how many oz the average baby breastfeed. And she gave me a number. If I was an RD, perhaps I'd remember the number. What I do know is that it was 400 or so. I suppose showing a mother a number on a calculator is easier than saying "Your child isn't getting enough food." I was still heartbroken. As I said before feeding is such a primal thing. So we struggled to get him to breastfeed more, eat more solids. He wouldn't. So we put down the NG tube. It was very difficult to have it go down and I cried about it.

Now this crazy woman was telling me he was overfed. I knew it was wrong and I was upset. I tried not to let her know how upset I was, but I was definitely not going to agree to pull the NG tube. It's funny how I both love and hate that tube. If you'd told me before Little T was born that I'd be fighting to keep a little tube that goes into his nose, down the back of his throat and into his stomach, I'd said you were crazy. And I felt a little crazy. So the NP left the room and said she'd bring a nutritionist. I calmed down by playing with Little T who laughed and smiled at me.

No-one came for 20 minutes. Then the attending doctor, the NP and the nutritionist came. The nutritionist had her calculator. The attending went over 4 different options including removing the tube, but said he wouldn't recommend it. I think that was just to save face for the NP. The nutritionist said he needed 600-700 calories a day. So we talked more and decided that we'd increase the calories of his pumped night feeding to 400 calories and stop tube feeding Little T during the day to try to get him to eat again. Since he can only tolerate 40ml/hour on the pump and 10 hours is about how long he sleeps, that means he gets a maximum of about 400ml at night. So we'd have to increase the caloric value of formula to make 400 calories. So we'd gradually increase the value from 24 cal/oz to 26 cal/oz up to 30 cal/oz. Normal formula is 20cal/oz, so it's going to be pretty sludgy. In addition, we'd increase the amount of Prilosec he's getting. Then they'd see him again in 2-3 weeks to see how he was doing.

By this time I was pretty fried, so I had to ask a few times to get everything right. They gave a sheet for some blood test to look at his nutrition levels. I asked for an allergy test for milk since the increase of reflux also conincided with a huge increase in formula and it was included. The nutritionist and her calculator gave me precise numbers for exactly what Torin would need each night as we increased from 24 to 30.

Then I walked across the street to Hematology. It was a little surreal. The waiting room wasn't crowded with parents and grade school children. Instead the only other people were 5 teenagers, college teenager it turned out. They were sitting there waiting for their friend Krista who had just been diagnosed with cancer. One of them said "It's weird weird weird." meaning about her friend. They got tired of waiting and said so to each other. I thought if only you knew how long I have sat here in this room waiting. But they oohed and ahhed over Little T who soaked it all up and gave them big smiles.

Little T fell asleep. After the usual 20 minutes, Merian and a nurse in training came to draw his blood. I handed her the GI blood test sheet. She said she had to find the tubes for it. Wrong colour tube=wrong test. Merian and the training nurse pored over the book to find the tubes needed, then searched to find them. Another 20 minutes went by. Finally the training nurse drew what was a large amount of blood for a little guy. Little T smiled and laughed afterward.

Then I waited another 15 minutes for his hematologist Wendy to come, because she was in her office. I didn't mind, because she had kindly arranged to see him today instead of his usual time on Tuesday, so I didn't have to drive to the hospital twice in one week. She said his arm looked great. I told her about the 6.3 kg and she wanted to reweigh him. Little T adores Wendy. He just smiled at her on the scale. A nurse commented that he usually screams on the scale. Very true. Weight of angel baby =6218.

Wendy asked where Special K was and I said she was with a friend. I said Special K's easy to find babysitters for. It's Little T that's hard. She asked why. I said I think people are afraid because of his medical issues. She very sweetly said she'd babysit if she wasn't working. Did I immediately gush and say thank you thank you!!! No, I was exhausted and said the first thing that came into my head, which was "You're always working." It seems to be true, but not a good response. Anyway Wendy held Little T for a minute and oohed and ahhed over him. He gave her big grins.

Then it was time to go home. Only 4 hours, so quick in hospital time. Little T and I got to sit in rush hour traffic. Fortunately Little T was exhausted and slept through it. I picked up Little K and talked to Laurel a little bit about what happened. It was 6:45 by the time we got home. I had meant to get home earlier and bake the meatloaf for a hour. I put on the oven anyway. Then Castor came home and suggested we eat out and that's what we did.

Well, it's not the new year by Western standards, but it is by many Pagan standards, because we just had the shortest day of the year. So the days will get longer and longer until the wheel of the year turns again.

Last night I went to Mary Anne's lovely cookbook party and she asked me if I was writing. Castor asks me this all the time. And I had to say no, not really, but I felt more sheepish with her. So I started to tell her what little I had been doing. And then my main reason to myself for not writing ran off and so I chased after her. And then I talked more about motherhood and not writing. And Mary Anne said that now she'd decided not to be a mother, she felt this pressure to be a better writer, because she couldn't say to herself well I'll always be a good mother.

And at the same time at this party, I received lots of validation that I was at least for those few hours a good mother, because Kerensa was at her most mellow and charming. She talked a lot for the first time to a bunch of people she didn't know, even saying her first 3 syllable word, octopus. Usually in front of strangers, she confines herself to a few monosyllables and I look like an idiot for saying she talks a lot, which she does when we're alone. She stayed up for hours past her bedtime and was clearly tired, but enjoying having her proper place as the centre of the universe confirmed. Today she's tired and somewhat fractious, and she cried because Daddy went away while I held her. But I still remember last night.

And as I snuggled in bed with her this morning. I realised that while I have my doubts about my ability to raise another human being to adulthood without damaging them too much in the process, I think every mother does and on the whole I feel good about it. And it's when I do feel good about myself that Kerensa is at her best.

And so I realised that I was afraid that I might in fact be a crappy writer. I might not write a wonderful novel. And while I do think that some of the creative energies used to nurture a child are the same as writing, I think I do have at least some room for both. So I decided today to write more by giving myself a small but achievable goal of writing something here everyday.

So here you go. Castor and Kerensa just got back, so I must go. See you tomorrow.

Well, this was my first month TTC and charting, and boy was it a disappointment! My temps went up and stayed up for 18 days, I felt pregnant, and then I got AF! I think sperm met eggie, but it didn't stick. :^( Oh well, better then than later.

I offered flowers to Freya from the wedding we went to last week and prayed for a healthy baby at the right time. If you remember, Special K was a result of a prayer to Freya. I was kinda freaked out about it, and was considering taking this herb Vitex. I even took one dose yesterday. Castor said "Your cycle is fine. Don't mess with it." I didn't listen like I should have, but then I got this great tarot reading that basically told me to trust my gut and not to make any foolish moves.

I'm back from Hawaii. We had a FABULOUS time!!!!! Kerensa was pretty good on both flights, even though the one coming back was a red-eye. She enjoys sleeping on us, but next time we'll definitely get her a seat. The airplanes were very crowded.

Highlights of our trip included:

K watching the waves crashing in and clapping for really big ones.

Swimming with Kerensa in the ocean

Snorkeling and see tons of fish. It was like swimming in a living tropical aquarium.

Watching a green turtle swim in the water.

Hiking almost to see live lava flowing. We turned back when we met a ranger who was supposed to be at the lava flow. She had a gas mask, but was walking back because the air quality was too poor.

Listening to Hawaiian music on the radio while driving. K was screaming in the back but after a few minutes, fell asleep.

It's great to be back home.

Hang loose!

For the first time in my life, I put a sign on my lawn endorsing a candidate. It was for City Council. He actually came to my door and talked to me and DH. He was canvassing our town on his bike. He seemed really well-informed, earnest and had some great ideas. But I didn't think he'd win, because he's new, definitely not part of the party machine, and he wouldn't accept contributions of over $100. But he actually got elected! I'm so excited!