swing!

last week i took coco to a park. i realized
that i had only brought her to a park maybe...
4 times. so sad! all this time i've gotten used
to NOT taking her out when its bright. but
things are different now! she can keep her hat
and sunglasses on much better than before, and
its like a whole new world for me! (and her)
of course i still avoid the sun between 11-4
if i can help it, i like to take her to the park
after 4. she loves swinging... she's on to me
now, everyday she says park? park?


20 months

at 20 months coco is a sparkly little girl, her
gemini spirit showing through. she loves music
and dancing, even listens to my awful singing all
day long. she's speaking and understanding both
english and japanese, her little voice talking jibber
jabber is hilarious! she's a bit reckless and fearless,
her favorite game is jumping off tables and couches
so you will catch her. she still HAS to put everything
in her mouth which drives me insane. and she is quite
an affectionate sweetheart, if she takes to you,
you will get a ton of hi's and hugs. if anything has
gotten me through these difficult times, its coco's
silliness and that happy smile of hers.


9 months later...

i can't believe it. another 9 months have gone by. but
this time i have a really good excuse. separation, pending
divorce/bankruptcy, moving in with my parents, letting tai
live with his dad. a lot of heartache. thankfully coco is the
least affected by all the emotions and changes in the past
4 months. she is still her happy, mischievous self and maybe
has gained the most out of the situation, my full time attention
as well as extended family to be with...her grandparents, her
favorite aunt and uncle and baby cousin.

3 months later...

i have so much catching up to do! its ridiculous.
every week (for 3 months!) i have it in mind to update
the blog. so much has happened since february,
i don't know where to start. from getting settled/unpacked
in a new city, our home visits with coco's vision teacher,
playdates with friends, big brother tai starting school,
another appointment with the ophthalmologist, a new
baby cousin, crawling, standing, cruising... well, i will
try not to berate myself too much, because every
week seems to get busier and crazier and i get less
and less sleep. but here i am! time to get caught up,
hopefully before coco turns one. i have to say, i am as
captivated by coco as i ever have been, and that seems
to be a good excuse for the lull.

2-10-09

tai has been having a difficult time adjusting to coco. at first
he didn't pay much attention to her. but in the past few months,
his frustrations of having to share attention with his baby sister
is obvious. i make sure i spend alone time with him every day
when coco is napping, and i am careful of being overly affectionate
with her in front of tai. it saddens me to see him so angry with
coco, especially since she is so captivated by him! when tai
comes into the room she screams with excitement and practically
jumps out of my arms to try to get to him. its so cute! i think
that i am doing everything i can to encourage tai to have a
positive experience with coco... hopefully he will get over this
phase soon! meanwhile, he does have moments of sweetness...


8 months old

coco and grandpa

my dad has a really hard time accepting coco's albinism.
to him, it means there is something wrong with her. he is
a very traditional japanese man, and image is very
important to him. telling people that she is albino would
be a stigma he doesn't want to deal with. he tunes out
when i talk about NOAH or meeting other parents. but
he is very concerned about her vision, and always asks me
about her progress. its funny to me, how he responds
when i tell him she is doing good.. 'see? she's fine now' he
says. or, 'don't worry, it will fix itself'. the other day, i was
explaining to him how her nystagmus will possibly slow down,
and he asked me if she will always have it. 'until she dies?' he said
and he shook his head, mumbling about her being teased
in school. i don't mind his behavior.. its just the way my dad
is. he is so wonderful with coco and tai. and seeing him with
coco makes me think of how he probably was with me and
my sister, when we were little. i feel like there has always been
a language barrier/cultural difference between my dad and i.
now that i have my own daughter, i feel closer to him. i know
he just wants the best for her, and for her not to suffer from
being different. i will continue to do my best to explain albinism
to him, and hopefully over time he will come to see it as a
positive thing, something special, like i do. meanwhile, my
dad is very devoted to coco..he is her biggest fan


noah cutie!

noah (the national organization for albinism and
hypopigmentation) puts out a quarterly magazine for its
members and they published coco's birth announcement
in the winter edition. i was so excited! it was very cool
they put in a picture of her big brother too! they also recently
sent out their 'annual appeal' letter for donations, and asked
if i would share what noah meant to me. it is such a wonderful
organization, i feel so lucky to have the support, and the
resources they provide, and to have met the people that we
have. if anyone would like to make a tax deductible contribution
to noah on behalf of coco..

NOAH
PO box 959
East Hampstead, NH 03826-0959




12-16-08

coco still doesn't focus on me. i thought that by now,
at 6 months, she would. it makes me a little sad and
worried, but i'm also used to it. and even though
she looks above me, or just past me, and doesn't make
direct eye contact..its so apparent that she knows i am
there. she knows my voice, and when i am close by, she
reaches out her arms to me.

IFSP meeting

today was coco's IFSP meeting! it means individualized
family service plan. basically it is a written plan stating what
my expectations are for coco, what goals we can hope to
achieve, in regards to her vision and development. i'm sure i'm
not explaining it quite right! present was ellen her vision teacher,
and sandra the nurse, who did a health evaluation on coco, and
mary ann, who is the coordinator for the early start program.
they all came over, and went through a lot of paperwork.
coco helped too!

toys

i ordered coco a few things from playworks.net.. they
specialize in developmental toys, and also offer toys
that are good for low vision. she's especially fascinated
with the 'meteor storm'.. so is her brother, i have to
use it when he isn't around to grab it from us!



giggles

thank you baby banz!

shari from baby banz sent coco a gift.. a 2 piece
swimsuit she can wear this summer and a cute
UV sunhat. thank you so much!!

6 months old

weight - 16.9 lb
height - 27"
at her checkup, the nurse had to measure her twice, coco has
grown so much in 2 months! she is in the 90th percentile for height,
75th for weight, only 10th for head circumference.. she has
such a flat head! she can sit on her own for a few seconds now,
but its hard to make her sit, she just wants to stand on her legs
all the time. she is very alert and curious.. and the wiggliest baby ever!


12-1-08 home visit

ellen our TVI ( teacher of the visually impaired) will be coming
once a week now. she spent 2 visits doing an assessment,
to see where coco is in her development. she did pretty good,
ellen says that her tracking is excellent. coco loves to play with ellen..
she brings a boxful of toys for her. she is drawn to the ones that play
music, and she loves the ones that light up.



albino playdate!

today coco and i drove down to the mission viejo area, to visit
some new friends. kara has a 4 yr old son, landon, and a daughter
alyssa, who has albinism. amanda and aaron have a son adam,
who has albinism. alyssa and adam are both around 17 months
old. it was wonderful to meet them all today! we all had stories
to share.






sunglasses

here is coco's sunglass collection so far.
the pink ones are custom ones from the
opthamologist's office.. i was totally
guilted into buying them. they are polarized,
which i'm told is necessary to block the glare,
and the other sunglasses i got for her apparently
are not, since they cost like 8 times less! they
should come with a gucci logo!! she will have
to grow into them, they are way too big. the blue
ones are by julbo, and i'm so mad because it says
0-18 months but they are way too tight... i think
coco has a big head? my favorite are the green
ones, by baby banz, because they seem the most
comfortable, and stay on her face. well, until she
tries to pull them off. (which is immediately)



eyes

i realized that coco looks like 2 different babies. during the
day she is usually squinty eyed with her face all pinched up,
but after the sun sets, her big eyes are wide open and she is
quite beautiful. it bothers me that she is so sensitive to the
sun.. but of course it bothers her even more. when its bright
outside i feel reluctant to take her out unless i really need or
want to.. in la, that means pretty much every day! when i
wake up and its gloomy outside, i'm in such a good mood.
it seems that other babies/kids with albinism have different
levels of tolerance with photophobia.. i really hope that coco's
sensitivity gets better as she gets older.

5 months old

11-3-08

this is ellen, she will be coco's vision teacher!
she came over today to introduce herself and to begin
an assessment for coco. i'm just waiting on coco's birth
certificate, so i can get the paperwork done.. i'm so
excited to start!