Belated and in no particular order
I'm thankful for

• baby Sam who shares the same birthday as me and is healthy and handsome.
• handsome Little T who allowed me to savor this past year as a baby and then suddenly lept into toddlerhood in August. I'm so proud of you and daily in awe of your determination and yet equanmity. It's a real privilege to watch you grow.
• Special K who tells me she's "not a princess". Already at age five, she's as one parent put it a very self-possessed girl. You lept into reading this year. I could say many other things, but you can already read so I'll just say that I'm very proud of you and you'll always be my little sunshine.
• C who has tried really hard this year to grow with me. Not always an easy thing.
• That we live where we do and can do what we like for the most part. For all that I complain about certain things like health insurance. I have health insurance and the freedom to complain. Luck especially when I think of how some of my relatives live and the millions here who just get by
• Our new mini van - a frivolous thing to be thankful for, but it has brought our children such simple joy and me the freedom to drive
• The daily hugs and cuddles I get from my kids.
  

Sorry gotta stop now.  Little T needs me.  

My boy will remain helmet free in the playground and be allowed to wander free.  I do have to write a note for my boy giving my permission. 

I do feel obligated to add his safety issues on playground equipment which a helmet won't help.  He still requires close adult supervision there.  Now if only my headache would let up so I could actually write decently.

Overall good. He got on and off the school bus like he's done it every day of his life. No tears or anything. He just sat there as he got strapped into the little vest. He was the last one on the bus.

When he got home he didn't want to talk about school at first. Typical. The bus was 20 minutes late due to a breakdown but the bus company did call me and his teacher.

His teacher said that he "didn't want to go along with the preschool routine at first but was persuaded." That's my boy. ;)

Later he said "I don't want to go anymore. I don't want to try." He denied meeting anyone including his teacher.

It means that preschool challenges him which is to be expected for one's first day of school. I was worried he'd cry or be bored. He clearly experienced neither feeling.

The neurologist in charge of his EEG study came by at 8:30pm last night after testifying in court somewhere 1.5 hours away. He said his preliminary finding is that [Little T's] EEG is "completely normal." Hooray for Little T! :)

I took Little T to his language evaluation and the SLP there pronounced him typical. He still has his problems but apparently he will just get over them with a little help from me and preschool.

As you may have noticed from past posts I had been coming to the same conclusion myself beginning right after I scheduled this eval. Little T suddenly decided to catch up a whole bunch on language especially in the last month after months of literally halting progress. I decided to keep the eval in case the problems turned out to be therapy worthy since my comparison point is Special K who started talking very early and very often. However my children ever delight in making me look silly.

I still remember my pediatrician asking me at one of Special K's first appointments. "Can she point?" "No" I replied since up until that time she never had. "Where's Elmo?" the ped asked and lo and behold Special K pointed to Elmo like she had been pointing her entire life. My jaw dropped. The pediatrician smiled and checked "Can Point" on her chart.

It's still sinking in to be honest. Right now he's quiet because he's watching tv. Yeah bad mom. TV clearly retards speech. But his speech/language is like his fine motor in his right arm. For a long time he had a depressing litany of delayed delayed in his tests "he needs therapy now(Mom run around and get him some)" and then after months of therapy suddenly he was typical typical typical "Don't worry mom". If his fine motor of his right arm is anything to go by he'll be singing complete songs soon enough. He loves songs and I have to say he can already carry a tune better than his sister. With the right help the healing and resilience of children is truly miraculous.

I have emerged with not one but two referrals from my insurance for Little T. This also while juggling my husband's Catbert HR director's switch to a new insurance company which of course switched over me and C just fine and left Special K and Little T with an unknown ped. Potential disaster averted by appearing in person the first business day of the switch.

I scheduled his speech evaluation appointment today and am on the waiting list for a neurology exam.

It's an odd world where you feel victorious for getting appointments where they tell you things that are wrong with your child just so he can get the same therapies he's always gotten that have helped him so much.

But as I tell myself often he remains the same bright social boy as ever. He can put together jigsaw puzzles with his right hand and feet. And with recently added features such as being able to briefly hold things in his left hand and to tell you in precise detail exactly what he wants and to say "I love you.". It's marvelous!

The details for why he needs these appointments are available in other entries. For now I'm going to celebrate my victories with a nice hot cup of tea.

I'm consciously trying to be less anxious about Little T's feeding. I realized that I was trying to make C feel the same level of anxiety as me. Of course if you're a parent you know this never works. And I realize that part of my anxiety is hormonal.

Last night we weighed Little T and he maintained the same weight despite the fact that last Monday we dropped his feeding by 30 calories and for 3 feedings this week he pulled the tube and didn't get his entire dosage. I am really very pleasantly surprised.

In the past few weeks he's started eating breakfast almost everyday and saying "I'm hungry." I haven't really acknowledged how he is a)increasing his total calories and b)recognizing hunger feelings. B is really really important to get off the tube.

I'm working on just offering him the most high calorie (and of course nutritious) food in a low key way. And trying remaining calm when he says "no". Like last night he only took one bite of C's salmon burger. Then later he asked for food and ate a 1/4 of a salmon burger on his own. His favorite food is "burger fries" though usually it's a beef burger. We go out and have one about once a week.

We've had a very difficult week and so I'm really happy that he maintained his weight despite all the stress and challenges to his caloric intake.

Yesterday Little expressed his first unique preference.  He has said "I like cars/trucks/dogs." but he was repeating exactly what I or his sister just said.  And it couldn't be more Silicon Valley -- "[Little T] cell phone love."

I just bought a new cell phone and Little T was utterly delighted.

So there you have it.  He's trying to prove me wrong.  :)

We switched to Resource 1.5 for Little T's feeding pump.  So far so good after three nights.  Little T will even drink the stuff from the little juice box it comes in.  Prayer to the feeding/emesis gods here.  I'd appreciate any good vibes that it keeps going well.

It's really great for C not to mix formula every night and to know the entire process will finish by 12:30 if all goes well.  And even if there are screwups with kinks in the line the latest has been 1am because the volume delivered is so much less.  

I've already noticed some changes in C and Little T.  C no comment.  Little T put on .2lb from a week ago.  His highest gain since last month when we bought an accurate scale and started weighing him at home every week.  Hooray!

Yesterday my husband and my two kids tried to go shopping but emerged with literally nothing after 3 stores.  My healing broken toe throbbed, and I was starving.  The kids were too cranky to be put back in the car, so I hobbled to a noodle place in the same mall.  And I discovered I lost my purse.  Horror. 

I walked back to Target, but I was too worried to think about my toe.  I wandered the circuitous route we had taken around Target.  I could not find my purse.  No one had turned it in.   

I hobbled back to the noodle place to eat.  I had ordered the wrong noodle dish.  I was very sad.  Everything was going wrong. 

I had to try once more.  So we drove to Target.   I stood in the long Customer Service line.  I felt forlorn, and lost too.  I thought about how long it would take to replace my driver's license, credits cards, etc.  Time I did not have. I felt very very tired.

Then like a miracle, I saw my purse sitting behind the counter.  Thank you kind and honest person who returned my purse with everything inside!!! 

I was too tired to cry "Praise be!" but I must have looked very relieved.  The person behind the counter said "We paged you." in a kind voice.  I believe in miracles and the kindness of strangers.   

Today my nanny found my library card (lost by my daughter for a few days) and the comma key on my keyboard missing for over a week is now back on my keyboard. I believe in miracles.

Little T is growing! Little T is growing!  He is now 26.3 lb and 85.5cm.  Okay he's almost 2.5 years old, but he's growing.  At our GI apt on Monday, we decided to start weaning him off the pump.  Cut it 20% to 500 calories.  We can also stick with formula. 

I had to ask about Pediasure.  We got a free sample.  Little T loved it.  I hated the smell, particularly after he spilled it all over himself.  OTOH I used to hate the smell of formula too.

Little T is eating more.  We need to wait a week to see if his eating will make up for the lost 100 calories.We'll measure him on Monday to see if he's still gaining weight.

My theory is he needs real food to grow.  The pump just give him enough to stay alive.  I know lots of heart patient kids grow on pumps.  However Little T's problem is his digestive system was destroyed by drugs.  So as his digestive system heals, he can eat more real food.

A couple nights ago I had this dream I was pregnant again. I woke up, not scared, just thinking I should pee on a stick, and find out for sure. Previously this would have been a nightmare for me. Of course I'm not. I am exhausted much of the time. I am, as the Catholics would say, Immaculate.

Nothing in my pregnancy/infants has gone according to any plan. I have to admit I haven't shared my story with anyone in its entirety, except for C. But today I want to. It's helpful for me, and may be helpful for someone else.

Before Special K, I had an unplanned pregnancy despite use of birth control pills. I continued to take them hoping that would result in a miscarriage. Thankfully it did. I wouldn't have been able to have an abortion, but once I was pregnant, I realised I didn't want a child with my boyfriend (who wasn't C), even though we had discussed getting married and having children together.

Special K was also unplanned despite condoms. C and I were already engaged. But for a time I was annoyed at the timing. I was working full-time, getting my MBA, and planning a wedding. Shouldn't stress prevent conception? Clearly not in my case.

After Special K was born, I wanted a particular timing between the kids -- 2-3 years. I started charting, and actually trying to have a baby. A novel concept for me. On our first try, I got pregnant. Unfortunately it was another miscarriage. Was it because I flew early on in the pregnancy or went to a volcano with nasty gases? Or just a bad egg?

I was pretty crushed. We took a break from trying for 3 months, though I continued to chart. Then we both felt ready and tried again. The result was Little T. The timing was perfect. Little T's health was castrophic. I have never regretted Little T for a second.

But I have learned that I can't plan anything to do with my pregnancies. I am content with two children. But I still have this feeling, we'll wind up with three. This thought used to fill me with terror.

The saying "abstinence is the only reliable method of birth control" is perfectly true in my case. Great for teens. Not great for a married couple.

C is supposed to get snipped at some point. However I have heard of women getting pregnant, despite the man getting one. Once in a great while, the snip repairs itself. I wouldn't put it past us to achieve such a feat. I'm not willing to undergo major surgery myself, given that I have enough to deal without adding major surgery to the mix. And as women sometimes have ectopic pregnancies after the procedure.

I'm very pleased that I have passed the milestone of no longer terrified of becoming pregnant again.

Thanks gconnor who very kindly gave me a year's subscription to LJ.

This is late (C is sick again and yesterday was a mixed blessing)

But this is what I'm thankful for this year:

* (I whisper this one quietly lest I jinx anything) I'm thankful this is Little T's first Thanksgiving where he's not on chemo and steroids.
* how Little T smiles hugely and exclaims "Mama!" whenever he sees me (even if I've only been gone for five minutes)
* the way that Little T and Special K make each other laugh and laugh
* Little T can finally talk enough to tell me what he wants and even occasionally say please, thank you and sorry
* Special K is now a reader
* the startling insights Special K offers on a range of subjects.
* how both kids and my husband love to cuddle and snuggle
* my extended family who are warm, funny and good to spend time with
* my dear RL friends who have come through for me time and again
* our nanny who both kids love and also drives us around and cleans the house. We're very lucky to have her.
* the online community here that has offered me support and friendship. My dialog with you has really enabled me to start taking better care of myself
* my first published work
* our good fortune to have enough money, C has a good job with good health insurance that we don't have to worry despite Little T's large medical expenses
* last but certainly not least that I can and do talk about everything with my best friend and husband C

We had a normal blood test on Tuesday, even including some extra tests for hormones like growth hormone, thyroid, tsh and anything that else would point to endocrinological reasons for his poor growth.

His hemo doctor said that his blood counts have been normal for several months now, so next visit she won't need to draw blood. Woot!

We took him off all steroids on Tuesday and aspirin today. Now he's just on Prilosec.

He gained a little weight up to 10.46kg or 23lb 1 oz. Still no height growth. In fact he supposedly shrank down to 75.8cm, but he wouldn't stand too well. But hey, he's walking now so he gets to stand on the big boy scale now and use the standing height measurement thing.

He also got tested for allergies today and has no discernable allergies. Hooray!

He's getting tested for Celiac disease and his stool will be tested for absorption to see if he has a problem absorbing nutrients.

He does seem to be eating a little more since we took him off the tiny dose of steroids he was on.

We went to koshkalet's lovely wedding yesterday. Others in my LJ friends have written more about the wedding itself. It was good to see my friends, but I didn't really get a chance to talk much, because it's always hard at wedddings and I was running after my kids. Even with C helping, Little T is one active little boy. Little T showed off his walking prowess by walking over the uneven tiles. He walked and walked and walked, wearing both his parents out. He also asked to be picked up a lot to the point where my wrists got hurt. I know I need to say no more often. Special K vanished for minutes at a time and emerged hugging some little boy or another, or holding his hand. She would have hugged little girls too, if there had been girls there to hug.

My ranch therapy thing was cancelled today.

We went to a charming birthday party. Today Little T said "more pizza" several times. It's the first time he's said two words together not in a speech therapy sessions and more than once. He also ate A LOT. To the point where other people were commenting at how much he ate. We skipped his feeding last night, because he went to bed too late last night. Clearly we need to take him to parties all the time, because he has his milestones at them.

He also says "mine." I guess I can't call him a baby anymore. He's a toddler now.

Thanks for your good thoughts. They helped. I think literally. Little T's fever went away in the morning and is still gone as of now.

I thought by staying up late I might ward whatever it was away. Previously I did my best to go to bed like a sensible mother, but slept poorly waiting for bad news. I have no idea if this magical thinking worked, or if Little T is just bigger and stronger. And I'm not saying I'll do it again. All I know is this. We didn't have to cancel his apt with the new neurologist we're seeing about his balance issues. This was a very good thing. I'll post more about the apt later.

Little T had an EMG study yesterday. I'm still processing it all and we don't have the actual report yet. An EMG study is to test nerve conduction i.e. how well the person's nerves carry a signal. They poke electrodes in your body and test the electric signal conducted. In an adult, you're awake and they ask you to contract your muscles. For a baby, they can't do the contraction part, because they must anethetize him. A friend who had it done on her arms assured me the needles don't hurt, but most of the articles I read say it hurts. For Little T, they poked his entire left and right arms to compare them.

Two things stand out in my mind:

1. The examining doctor said he had MODERATE nerve damage in his left arm and definitely doesn't need surgery.
He also said there didn't seem to be specific area that were more damaged than others. That's really good news. In layman's terms, he has a weak but complete signals going throughout his left arm. Previously his hand surgeon felt he had major nerve damage based on his arm function and had seriously been considering nerve grafts.

I think the study means the nerve damage is probably more due to nerve compression from the tumor which is great, because the tumor is still shrinking. But the examining doctor couldn't answer that question. I'll know more when we see the hand surgeon on Wednesday.

2. His little face screaming in terror squashed and muffled by the gas mask over his face.

I won $25 of groceries from Trader Joe's from the BYOB raffle they hold every Saturday. It made me very happy. Particularly because I worked a bit for it. Often the clerks would give me fewer raffle tickets than the bags I had filled, so I'd ask for more. Also do you know how long it take to fill out raffle tickets while two small children wait for you? I will be sure and buy some chocolate with part of the money.

Last night we went to a lovely party and my friend Tamara performed a feeding miracle with src's turkey chili.

Little T ate at least 30 kidney beans. He's never eaten that much in an entire day before! Tamara put each kidney bean on a spoon. He took the kidney bean between his finger and forefinger, put it in his mouth, chewed and swallowed it like a normal person. I was so shocked and amazed and happy.

He will sit and eat for fifteen minutes. But normally eating one tiny toddler bite of food literally consists of a one-minute inspection. It's a combination of a fine food taster, a royal food tester for poison, and toddler food masher. He twists and turns his morsel of food inspecting it from every angle. His eyes squint suspiciously. If the food fails some part of his test, he throws it on the floor. Next he delicately touches the food to his lips. Then he inspects it again and puts it whole in his mouth. He spits it out and inspects again. Then he chews it once, carefully extracts it from his mouth, and inspects again. It takes a very long time to eat a piece of food if you can only handle tiny pieces and take out the pieces between each bite. Therefore in fifteen minutes of eating he manages to eat only one to two tablespoons of food.

A couple days ago he ate half a sausage and we were also amazed. I think switching to Prilosec is really helping. Or his GI system is finally healing from the chemo and steroids. Or Tamara really is a miracle worker. But I hope for Little T's sake that he doesn't need Tamara to eat properly, because she lives in Vancouver.