coco's albinism

swing!

2010-02-18T01:26:00.000-08:00

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

2010-02-17T23:52:00.000-08:00

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...

2010-02-17T21:49:00.000-08:00

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...

2009-05-15T02:29:00.000-07:00

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

2009-03-06T00:57:00.000-08:00

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

2009-03-06T00:50:00.001-08:00

coco and grandpa

2009-02-24T22:26:00.000-08:00

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!

2008-12-28T07:55:00.000-08:00

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

2008-12-28T07:13:00.000-08:00

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

2008-12-19T00:02:00.000-08:00

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

2008-12-15T23:07:00.000-08:00

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

2008-12-15T23:06:00.000-08:00

thank you baby banz!

2008-12-15T14:04:00.000-08:00

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

2008-12-08T03:57:00.001-08:00

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

2008-12-03T01:07:00.001-08:00

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!

2008-11-27T02:24:00.000-08:00

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

2008-11-17T21:01:00.001-08:00

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

2008-11-17T20:43:00.001-08:00

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

2008-11-05T21:54:00.000-08:00

11-3-08

2008-11-05T21:29:00.000-08:00

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!

early intervention

2008-10-20T21:41:00.000-07:00

today i made some phone calls, to find out what i
needed to do to start the ball rolling for coco's
early intervention. early intervention applies to
children who have special needs that may affect their
development. albinism falls under the category
for visual impairment, so coco will qualify for
these services.

its a bit confusing, there is a lot of terminology
that i'm not familiar with. (not yet, anyway) and
there are all these long titles that everyone has.
so i started off with the Special Education Family
Resource Center (see!) which is a non-profit
organization that provides resources and services..
and they directed me to the torrance unified school
district. i will need to bring in a report from coco's
eye dr, immunization records, birth certificate and
some proof of residency.

once we are registered, they will refer me to get
an assessment for coco, and assign a vision teacher
who will help with her vision therapy.. not sure what
this involves yet. i think the early intervention will
be great, so i know that i am doing everything i can
for coco's development.

red eyes

2008-10-20T21:34:00.001-07:00

this is how coco's eyes look, in certain lighting.
it reminds me of red flame seedless grapes!

eye doctor visit 10-13-08

2008-10-16T01:46:00.001-07:00

dr. simon was very pleased with coco's progress!
she thought the nystagmus had slowed down a bit, and
was impressed with her alertness and her good nature. : )
we don't have to go back for 4 months..

10-09-08

2008-10-16T01:41:00.000-07:00

coco's first foward facing outing! the baby banz sunglasses
stay on ok.. i have to keep making sure they are on right.
of course she likes to pull them down..

10-08-08

2008-10-16T01:38:00.000-07:00

happy girl!

9-24-08

2008-10-16T01:31:00.000-07:00

getting stronger..

9-13-08

2008-10-16T01:29:00.001-07:00

still not focusing or tracking me, but
it does seem like she sees things sometimes..

family!

2008-10-15T22:31:00.000-07:00

grandpa roy

ojii-chan

obaa-chan

daddy

grandma irene

uncle eric

auntie miho

coco's big brother

2008-10-15T22:20:00.000-07:00

tai is exactly 2 years and 3 days older than coco.
he is very sweet towards her.. but he gets mad
sometimes when she cries. he likes to play with
her feet and gives her kisses.. and doesn't
complain too much that she takes up our attention.
i think he will be protective of her and be her hero..

3 months old

2008-10-15T22:19:00.000-07:00

8-30-08

2008-10-15T22:18:00.001-07:00

all of coco's adorable clothes are courtesy of
dana, chloe and josie..

sun

2008-10-15T14:56:00.000-07:00

coco has photophobia.. she is seriously
sensitive to light. well, mostly outdoor light.
so far, this is the hardest part for me to deal
with. it was easy the first few months, since
she slept so much and i just kept her covered
up in her infant car seat.

tai loves to be outdoors. and all of a sudden
i felt a bit trapped at home with the blinds drawn.
i could see how even light from the window could make coco
fussy and uncomfortable. i looked with envy
at other people's babies, blinking in bright
sunlight with no problems.

but then i saw pictures of other kids with
albinism.. at the beach, swimming, playing
soccer, at disneyland. that made me feel
better.. we just have to have the right gear!
sunglasses, hats, sunblock!

i love taking her out for walks after the sun
goes down.. i call her my little vampire. ; )

eye doctor visit 8-11-08

2008-10-15T14:32:00.001-07:00

this was coco's first time back to see dr. simon
after the clogged tear duct visit. i was much more
composed this time, having had time to absorb
a lot of information and emotions.

my main concern at this appointment, was that
coco was not looking at me, or tracking anything
right in front of her. dr. simon informed me that
at our first visit she had dilated coco's eyes and
found her prescription to be fine.. meaning she didn't
need glasses to improve her vision at this point.

she said that her nystagmus wasn't bad at all, and
that she would give her a few more months on
the focusing thing. i have learned since, from
other parents, that their babies didn't focus on
them til around 6 months old. since coco is still a
baby, we won't know the extent of her vision problems
until she is older. meanwhile i will hope for the best!

dr. simon stressed the importance of sunglasses,
because of photophobia, which is sun sensitivity.
and sunblock, of course. i feel confident in dr. simon..
she also has other patients with albinism. our next
appointment would be in 2 months.

eyes

2008-10-15T13:59:00.001-07:00

coco's eyes look like they have pigment in them.. they are a
kind of brownish gray. sometimes they look like a gray blue.
dr. simon thinks they will end up blue..

oh.. i should mention that it is a myth that albinos
have red eyes! unless u take a flash picture!

7-28-08

2008-10-15T13:52:00.000-07:00

4 weeks old

2008-10-15T13:47:00.000-07:00

nystagmus

2008-10-15T12:45:00.000-07:00

nystagmus is rapid involuntary movement of the eyes.
the involuntary eye movements of nystagmus are caused by abnormal
function in the areas of the brain that control eye movement. this
is one of the conditions that albinism may cause, from the eye
not having enough pigment to protect it from excess light.

i noticed coco's nystagmus at around 3 weeks. at first i thought
she was just looking at her surroundings. we were like wow, look
how she looks at everything! but then i realized that it was the
nystagmus. to my understanding, it will slow down as she gets older.

albino?

2008-10-10T23:53:00.000-07:00

no parent wants to accept that there is something wrong
with their child. i'm no exception. to think that coco may have
a hard time growing up, being different from other kids, is
really hard to swallow.

after the initial shock i embraced coco's situation
whole heartedly, but it took roy a little longer.
he asked me, 'can't we just focus on
our daughter, and not the albinism?' and my reply was,
that albinism IS a big part of who she is, and i want
her to be proud of it.

i hope to be able to instill in her confidence, first and
foremost. to know that being different is a gift. how she
uses it will be up to her, but i will do my best to
encourage her to have a strong self esteem.

i know its not very correct, to use the word albino.
but i don't have any issues with that word. of course,
it can be hurtful when it is used in an derogatory way..
but i don't believe in tip-toeing around the fact.
coco has albinism, she is also albino. it won't take
away from the fact that she is a happy, giggly,
beautiful baby girl. i hope that no one will take
offense that i occasionally use that word. : )

albinism

2008-10-10T20:11:00.000-07:00

at first i was pretty confused about the whole
genetic thing. ( i'm still confused! ) both parents
must carry the albinism gene to have an albino baby.
so, does that mean that somewhere
in my family in japan, someone had albinism?
i read that 1 in 70 people carry the albinism
gene. and when 2 of those people, like me and roy carry it,
you have a 1 in 4 chance of having a baby
with albinism. the fancy name for it is 'autosomal recessive'
inheritance. the part that confuses me, is
HOW someone has the albinism gene.

we will eventually get genetic testing done, and
hopefully that will tell us what kind of albinism coco
has. because there are several different types.
but, according to what i read on the mayo clinic site,

*Oculocutaneous albinism 4, caused by a gene mutation on
chromosome 5, is a rare form of the disorder generally
presenting signs and symptoms similar to those of type 2.
Studies suggest that this type may be one of the most
common forms of albinism among people of Japanese
and Korean descent.

( mutation? oooh that doesn't sound nice )

it took me a few weeks to really accept coco's condition.
part of me kept thinking, maybe its not albinism,
maybe its from roy's side of the family... after all,
his dad's side is danish/irish!! having light hair and light skin
wouldn't be bad at all.. its the possible vision problems
that had me so worried.

when you have little or no pigment in your eyes, it causes all
sorts of complications. at first i had a hard time believing that
nothing could be done about this. wasn't there some
kind of surgery, to make your eyes have more pigment??

when coco was about 2 weeks old, i was standing in the
kitchen under an overhead light. she opened her eyes
and they turned a fuchsia color.. since she has little pigment
in her eyes, you just see right thru them. i knew then without
a doubt, that she had albinism.

NOAH

2008-10-10T15:46:00.000-07:00

NOAH is the national organization for albinism
and hypopigmentation. they offer many resources and
amazing support for people with albinism.. and
parents with children with albinism, like myself.
i do not know what i would of done, without a
support system, such as NOAH. as luck would have
it, they also came out with a book called
'raising a child with albinism,
a guide to the early years',
soon after coco was born. this book gave me
great peace of mind. NOAH also has an online
community where you can get in touch with other
parents all over the world.. its very cool to be
able to post questions and concerns and have other
parents share their expertise.

purpose

2008-10-10T15:10:00.000-07:00

this blog is for coco.. and for friends and family, to keep up on
her progress. i hope that you can learn something new,
as i have, about albinism.
they say that 1 in 20,000 are born with albinism worldwide,
so its not the most common thing to know someone with albinism.
and maybe this can be helpful to other parents, the way mashawna's
blog was for me, to see that a child with albinism isn't so different from
other children, that there may be challenges, but that the love you have
for them is really all that matters.

june 5, 2008

2008-09-30T12:55:00.000-07:00

coco midori
born at 1:33 pm
weight 7 lb 11 oz
length 19 "

coco was born with blonde hair, much to our surprise.
dr. mckindsey speculated whether she was albino or not..
but after consulting with 2 pediatricians, they decided she
had enough pigment in her skin and hair.
i am full japanese, and roy is half mexican, half caucasian. we
attributed it to roy's dad's genes.. he is very fair and blonde.

after coco's first dr's appointment a few days later, we had to
take her to see a pediatric ophthalmologist because of a clogged
tear duct. dr. simon looked into her eyes and said to me,
'i think she has albinism'

of course she knew.. shining a light into her eyes would
immediately show her lack of pigment. dr. simon was being
tactful at that point.. i was totally emotional and in tears,
post partum hormones going crazy, and traumatized from
watching her pushing on coco's eye area hard enough to crush
her skull (thats what it looked like!) dr. simon handled me
very well.. she is matter of fact and doesn't mince words, and
has a calming demeanor.

i remember freaking out and asking her, 'what does that mean?'
but i was more concerned that coco might have to have surgery
to unclog her tear duct. thankfully, after a few more tries
dr. simon was able to clear it by putting pressure on it. she
told me to bring coco back in 2 months.

i didn't know anything about albinism.. just that you have white
hair and white skin. i thought mostly caucasian people had it,
and i knew that some african american people had it. i didn't
know about it being a genetic condition, i didn't know that there
were asian people with albinism. i was upset and overwhelmed,
because i didn't understand it.

i started researching albinism online and came across NOAH,
the national organization for albinism and hypopigmentation.
i also came across one parent's blog that helped me more than
anything else. it is one mother's story about her daughter, who
is the same age as my son tai. she talks about her personal experience
with albinism and documents everything her daughter went through.
she's inspired me to have a blog for coco.. to document her journey
with albinism.

and so it begins!