Little T's first haircut

Check out my mullet!
My hair's in my eyes! I need a haircut!

I'm not too sure about this haircutting thing...

Hey! Where did my hair go?
Getting my hair cut is interesting


Ooh a mirror!


So handsome with my new haircut!

Sister and brother love

For Chookooloonks and Momster comes another Love Thursday. From the first day she saw him in the NICU, Special K has loved Little T. This photo was from the first day she was allowed to hold him. She was so thrilled she gave him a big kiss.


Special K and Little T laugh together every day. They share private jokes between them that I don't understand. Most are non-verbal since many of them began before my son could say a word.

Special K says about Little T "He's so handsome!" "He's so sweet!" "He's so annoying!" (when he pulls her hair)

At almost two years old, but only 30 inches and 22lb, my son's small but scrappy. Special K's quick to intervene if anyone gets in his face. She says "That's my brother!" If he does something wrong, she says apolegetically "That's my brother. He doesn't know any better cos he's a baby."

Technorati Tag: Love Thursday

I celebrate my son's half shoe size successes

My son has grown half a shoe size. I know for many parents this isn't a cause to jump up and down and celebrate, but for us with a child who didn't grow for months, we're so thrilled.

On Friday, we had my son's Individual Family Service Plan(IFSP) for Early Start. We discussed his progress for the past six months, or in our case the past nine months because his IFSP got delayed like everything else. ;) The report and the goals outline which services he receives.

His ISFP report outlines how my son had another relapse of his tumor, his third, and a secondary infection. After he started chemo and massive amounts of steroids, he stopped talking if one word a day counts as talking and he stopped pulling up. He started pulling up again a couple months later. He didn't meet his goals to walk or to be weaned off his g-tube, but he's worked hard.

He met these goals:

get up on his knees, cruise 90% of the time, reach up on his toes and walk with assistance of another parent or a walker - hooray

He can also stand independently if standing for 10 seconds counts. :) Okay it doesn't, but he's working on it.

He initiates conversations. He says these words all the time "go", "ball" "bubble" "bye" "yum" "uh oh" "wow" "yeah" and "mama". He says "backpack" "car" and "dada" maybe once a week. He'll say "mo" (more) "baba" (bottle) "fire truck" "bird" and "ca ca" (cracker) if you say the word first. He understands quite a bit, but other words he won't repeat.

I list these individual words, because now I'm a parent, I no longer believe the quote "The limits of your language are the limits of your world." But these words surely reflect his personality. He's a "yeah" guy not "yes" and "wow" is actually "wowwwwwww", a term of great approval. "go" tells me to go outside where he wants to play all the time and rush around. He's so active. Backpack reflects his and his sister's passion for Dora the Explorer.

He made some progress towards feeding. He eats like a typical toddler now instead of examining each bite like an inspector. He eats 3 tablespoons at each meal instead of 1-2. He drinks 3 oz of formula a day instead of 1.

His goals for the next six months are to walk, talk more and to eat more.

And to me, half a shoe size symbolizes where we are right now. It's not the full shoe size of typical kids. But when I think about where those little feet have been in the past nine months, I feel incredibly proud of what he's accomplished.

Crossposted to Silicon Valley Moms Blog

Little T makes a stand

Little T stood for the first time today. Being him, he wanted to look at a car. He's been trying to rise from his knees to standing for a couple weeks now. He bounced up and down, up and down. Today was a slow graceful rise.

But this also came at the exact same time as my neighbor came to tell us my cats have started pooing in her yard. She told us they have been for the past three weeks. C has put out for a litter box for them. Our neighbor tried cat repellent. I hope the litter box works, because if it doesn't I'm not sure what we'll do.

Technorati Tags: sons, milestone, parenting mom blog,mommy blogger, cats

Little T the talker

In the past week Little T has made a huge leap in his speech. He's started having conversations. I admit these conversations are on the level of Koko the gorilla and not typical conversation, but they charm me.
Mama mama, up up
I pick up my 23 pound baby. My wrists hurt.
He grins hugely at me.
Mama mama down.
I let him slide down my leg just the way he likes. He laughs and laughs.
Mama mama up up
I pick him up again. My wrists hurt even more.
Mama, down.
We repeat this game several times, even though my wrists are killing me.
Yes, he's learned "Mama will do whatever you want as long as you talk to her."

Little T's first steps

Not to be outdone by his sister, Little T took two steps yesterday from the couch to the coffee table. Go Little T!

Special K's first reading lesson

Special K has asked me several times to learn to read. Before we started, she could already read several words like "ok", "no", "on" and "Deeprun Tram".

As soon as the reading books arrived, Special K wanted to read them. She read the first two books of the first set of the Bob Books. Together we read the first book of the first set of Dora Phonics Together we read the first Dora book and book 9 of the Bob books. The Dora books are way too advanced for the absolute beginning reader, but she really loves Dora.

I taught my sister to read almost twenty years ago, and the Bob books are a lot easier and more interesting than the Peter and Jane books we read. However Special and I started to have the same frustrating problem where phonics didn't make sense to Special K. They never made much sense to my sister either. Sure Special K knows every letter sound and can sound out C A T, but to get from there to the word 'cat' is a huge leap.

In reality I don't read that way and my mom tells the story of how she tried to teach me to read. "r-a-t, what's that word?" I replied brightly "Mouse!" I remember a teacher taught me to read in preschool, but I forget quite how.

I've memorized thousands of words and word chunks. On the rare occasion I encounter an unfamilar word, I never sound out the word letter by letter, I process it as a chunks. With my sister, phonics only made sense after she had learned to read as tool to learn harder compound words, not as a tool for learning to read.

I was beginning to think the same might be true for my daughter, but the Bob books are much more clever than the books twenty years ago. They have words like Mac, and Mat and rhyming words like bags and rags. After she read bags, I told her rags was very similar to bags except it started with r, and she got it.

I've heard of some other movement like whole language or some such. If I had more time and patience, I might look it up. I took a brief look at this DISTAR book, and to be honest, it looked so tedious and difficult for the poor parent, not to mention the child. You had to move your hand in a certain way. A total nonstarter for a person with a movement disorder. And each lesson didn't seem to tell a story. What's the point in reading to a 4-year-old if you can't read a story? But then I'm afraid most reading theories make me want to beat my head against a wall. "Did you bother to make it fun and exciting?" as well as fit with your theory.

But if you have any fun and exciting recommendations, please let me know.

Booster seat dilemma

Little T has finally grown out of his infant car seat. C and I debated whether to graduate Special K to a booster seat. She weighs just over 30lb and is about 38 inches tall, so she just about qualifies for the Britax Parkway. It costs $89 while a car seat costs $230. Special K has more freedom to move around in a booster seat. However a booster seat is easier to install wrong and can be less safe.

In the end we decided to buy the booster seat and use it as the spare car seat. Our nanny uses this seat to take Special K to gym and for occasional other trips. Right now our spare car seat is a Britax Roundabout. We'll put Little T in the Roundabout. By the time Little T grows out of the Roundabout, we should be comfortable having Special K in a booster seat full-time.

It amazes me how stressed out I got making this decision. I'm the parent banned from a group of mothers for letting Special K eat sand. Yet I got scared when I read sites that "Children should be get in harness restraints as long as possible." and "children under 4 should not ride in booster seats." Also two years ago our car was rear-ended by two cars in a car pileup. Special K was just under 1. WS and I both had back injuries that required treatment while Special K escaped unharmed.

Milestones meeting

We reviewed Little T's goals on Tuesday. Little T exceeds expectations in all areas of review. He's made remarkable progress, considering he's been hospitalised five times during the review period (six months) Yes, Little T has goals written down on paper that the state government (Early Start) pays to have met. It's all written on our IFSP (Individual Family Service Plan), because every government program must have an acronynm.

When we completed this IFSP on 5/13/05, Little T literally just lay there. Five months of chemo had ravaged his body. He couldn't lift his head. He made no sounds. He gazed at you with bright intelligent eyes, but no-one but his family and a few doctors and nurses who knew him well had any indication he was anything other than "delayed".

A lot of the goals are devised in conjunction with the child development specialists, and like any speciality they have a syntax all their own.

For those who want to see your tax dollars at work, need to fill out an ISFP, or are just curious about Little T's progress, here are the details.

Outcome: Language Skills: [Little T] will say two to three words - met!
Criteria:

Little T will

• increase vocalizations, babble in response to parents interacting with their own voices. [sic] - met
• use "mama/dada" specifically - Sadly, no. He babbles "dadadada" and "mamamamama" and sometimes I think he might be calling me, but I've never heard him say "mama"
• wave or respond to bye-bye. - met
  

Outcome: Gross Motor Skills: LT will be mobile without assistance - met!
Criteria: Little T will

• demonstrate improved head control in all positions, turning head freely from side to side. - met
  
• play on stomach, bearing weight on right arm and left arm as able. - Needs improvement. His G-tube makes stomach play uncomfortable.
• roll from stomach to back and back to front - met
• maintain a sitting position using his arms to prop for balance as needed - met
• bear full weight on legs in supported standing - met
• with adult supervision, stand without adult support while holding onto or leaning on a small piece of furniture (couch or coffee table)- met

Outcome: Adaptive: Little T will feed himself enough so that he gets enough calories - Didn't meet goal at all, but did work towards goal. Feeding issues take a long time to resolve and the five hospitalizations set him back.

Criteria: Little T will

• Increase amount of feedings taken orally under supervision of physician. - Met. He now takes 8-10 oz a day up from 2-4 oz a day. Though to met his caloric needs he needs to take 32 oz a day.
• learn how to feed himself finger foods - met
• learn how to drink liquids by himself - met and just days before the ISFP meeting
• learn how to drink from an open cup - not met. He needed to meet the goal above first.

Thida will learn how to feed Little T solids. - met

Outcome: Little T will put objects in a container and take them out again. - met

Criteria: Little T will

• bring objects to midline and transfer them from hand to hand - not met
• work for a toy during play/retrieve an item using other materials - the first goal was met, but not the second
• uncover a hidden toy during play - met

Outcome: Little T will hold and manipulate an obiect with his left arm and hand. - not met

Criteria: Little T will

• move his left arm and hand voluntarily - not met -he can shrug his left shoulder and curl the fingers of his left hand, but that's about it.
• reach for an object with his left hand - not met
• grasp an object with his left hand - not met You can curl his left fingers around an object and make him hold something, but that's not really grasping an object.

The goals he didn't meet are continued on the new IFSP and he also has new goals for the next 6 months. The new language goals don't sound like English to me, because now he's getting speech therapy and his speech therapist outlined them. Actually, I'm not going to list the new goals. It feels like I'm pressuring him if I do. I know he can't read, but we can. In six months time, I'll report back how he's doing.

Minor milestone for Little T, major milestone for Mom

Little T has technically been able to hold his bottle for months, but on Tuesday he finally figured out how to tip his bottle, so he can actually drink from his bottle. Now yesterday he doesn't want me to hold his bottle anymore. Woo hoo! He can drink on his own. His OT has been pushing me to put him on a sippy cup. Now we can finally start.

Yesterday also for the first time I saw him move his left fingers in response to what his right fingers were doing. His right hand was grasping something and his left fingers also curled. Everyone is always amazed that his fingers can curl. He can now also shrug and rotate his shoulder.

Yet even as I present this latest marvel, each time various doctors tell us his arm will never gain any more function. He has missed several milestones like bending his elbow. Supposedly when he misses these milestones, it means he has missed the window of time for the neural pathways to develop. But he can't bend his elbow right now, because his tumor is in the way. He can't lift his arm much, because his arm is so heavy. Eventually he'll figure out that he can use his right arm to help his left arm.

I think the brain is more plastic than doctors realize. I just watched the "Secret Life of the Brain" where they showed how doctors can now train stroke patients to regain use of paralysed limbs. Much the problem is Little T doesn't realise what he can do and his arm is too heavy for us to easily move it for him. Once he's older and we can tell him, I believe he will fight to gain his left arm's full function. Right now he just has a dim awareness that his left arm and hand should do more. Sometimes he tugs on it and cries in frustration. He plays with his left hand sometimes. He likes to throw things with his right hand. I think he'll amaze the doctors by throwing a ball with his left hand. He's a tough little guy.

Year In Review Meme

Take the first line of the first entry from each month for the last year. (Gaked from luvmoose, owlmoose and madlori)

I didn't have any blog entries this year before May.

May: The Water owl is a rare strange bird, so I provide you with this field guide to the medical issues that form a background to her daily life.
June: Little T showed off his rolling at his OT apt.
July: I'm amazed at how much progress Little T has made with his legs.
August: It mentions sex, so be warned, if some reason, you don't want to be exposed to sex.
September: I'm amused that I'm Sparrow as she was the only Asian American character for a long time.
October: I think it actually says a lot more about the quiz makers than me.
November: Yesterday Little T seemed quite recovered from his illness.
December: I caught up with my writing quota and am now even a day ahead.

Conclusion: I've had a tumultuous year, hopefully one of the worst of my life, but you'd never know reading this. Bad stuff doesn't happen on the first entry of the first month, at least not this year.

Running monologue

Special K has entered the running monologue stage of development. For example today she told me that my slippers were black, but they could be green like leaves a frog or red like a fire engine or brown like a bear. And many different things about the colours it could be. It went on for a couple minutes. I can't remember it all. Then as we were walking along to the library, she told me about climbing trees and how you need a long ladder to climb trees.

It's really pretty neat to see inside her mind. Though still sometimes when I ask her a question usually related to matters of time, she replies "I don't know the words." Time appears to be relatively fluid to her. A lot of things happen last year including things that happened yesterday.

Little T's platelets were 90 today and his fibronogen was 120. We were disappointed, because we hoped his platelets would be better instead of about the same as last week. We'll continue his steroids at the same dose and hope that next week will be better.

We go on Wednesday next week instead of Tuesday. The hematologists are going to a conference in Atlanta. I asked, "Don't doctors usually have conferences in more of a vacation destination?" Little T's hematologist answered "The conference was originally going to be held last week in New Orleans." Ouch.

Stretching

I spent some time today writing a letter to my insurance justifying physical therapy with UCSF instead of the local PT company who has no clue what to do with me and my myoclonic dystonia. I've not been nearly as good dealing with this issue as I have dealing with Little T's numerous medical issues.

With some nudging from C, I've gotten better at doing some of the exercises in the handout the PT gave me. The handout says to take an hour a day. I don't see that as attainable right now. I can manage 15 minutes twice a day. I also think it's more sustainable for me to repeat the same set of exercises twice a day. I'm supposed to be stretching and relaxing tense muscles. I find it difficult to learn new things. If I have too many things to remember, I focus on thinking rather than doing, and I jerk a lot more. So I'm continuing my ankle exercises until Dec 15 making it two months of exercises. And I just added exercises to stretch my neck, back and pectoral muscles and one exercise to stretch my arms.

Little T has stretched too. He's started cruising again. He lets me walk him holding his arms again.

I wrote more today, so my manuscript is now 30,764 words.

I also managed to prepare and roast a chicken. All in a productive day.

Yesterday I posted Special K's birth story.

Little T's speech evaluation

Little T had his speech evaluation on Sunday. Both of his OTs suggested it at the end of September. We knew he was somewhat delayed, because he spent January to May on Vincristine a chemotherapy drug, which paralyzed his vocal cords. For months he could make no sounds at all. Before Vincristine, he was starting to babble. After Vincristine and until he was 11 months old, all he said was "gah." Then he started saying other syllables like "bah" and "mah". Then finally earlier this month at 13.5 months he said "bye" his first word. Now he says "hi", "yeah yeah yeah yeah" a lot and "uh oh" once. I thought that four words was good enough, but apparently not. None of his words label a person or object.

He points. He reads books for about two minutes. He occasionally answers questions with yes. All good. However he doesn't repeat any sounds. He doesn't respond to no. He doesn't follow any directions.

The thing that worries me the most is not repeating sounds. He stares at you intently with furrowed brow and then tries to do something, but he just can't do it. So he laughs or says "gah". Even if you say something he can already say. Something seems broken there.

Now I'll have to say what his speech therapist said, which is there's a huge variation amongst kids, so if you have a normal kid who doesn't have any medical issues and is like Little T, then I probably wouldn't worry about it.

The speech therapist will recommend therapy obviously through Early Start. We'll see what happens.

I've been talking and reading to him everyday, and asking him to do things. That's how I always treat him, but it's apparently also good speech therapy. The therapist also suggested giving him a choice of two objects and asking him to point to one.

Little T's slow rise

I guessed Little T's platelets would be 95. They were 97. That's not normal, but also not dangerous. If his platelets continue to remain at this level or above, he's going to continue on the same high dose of steroids for another month, then gradually wean down.

He's finally started gaining weight again up to 9256g, though the steroids are definitely stunting his growth, because he hasn't grown at all since he last measured on 11/16 when he measured 69.7 cm.

We had to wait over half an hour for his blood draw, but we had Sean again, so once again he got it smoothly on one try.

We're going down to once a week appointments now. Phew!

Despite the high dose of steroids, Little T is still laughing, scooting, and babbling most of the time. He only flies in rages about twice a day. His arm continues to shrink and his elbow now bends ever so slightly as the tumor slowly shrinks milimeter by milimeter. Though I am concerned that with the steroids, he seems to have lost his desire to walk or cruise. When I try to walk him, he won't hold his legs straight. However he pulls up on C and me all the time. Go figure.