november 11, 2007

IMAGES

1:40pm

i think i like to say lili has trisomy 21 rather than down syndrome.
down syndrome just sounds so...well...down.
and mr. down was a superintendent who worked in an asylum who called humans with trisomy 21 "mongoloids".
do i really want to invoke this guy's name all the time? not really. he isn't a very important person to me.
and "syndrome" just sounds so...negative. and i'm not sure syndrome is entirely accurate.

however trisomy 21 is just what it is. the 21st chromosome tripled. which is all that "happened" in lili's case.

so from now on i think i will try to just say that lili has T21.
a tripled 21st chromosome.

it's not something that is disabled, diseased, disordered or wrong.
it's just different and extra.

i'm not trying to be all happy and fluffy about it.
i'm just trying to see it how it really truly is.
a tripled chromosome.
no more and no less.

 

1:36am

i've been making 25 ounces of breastmilk a day :) (today 28!)
so i've totally been able to feed lili :)
her poos are changing over nicer smelling breastmilkpoos and her farts are WAY less ghastly.
it feels sooooo goooood to be able to feed her 100% breastmilk now.

my nipples are sore from the pumps.
i ordered some extra large breast shield thingies for the pump in hopes this will be a better fit for me and make my nipples less sore.
i hope they get here SOON!
and i ordered some more glass bottles that are bigger since she drinks more than 4 ounces at a time now a lot (sometimes she'll drink 8 ounces!)

last night m and i were saying "i love youuuuuuu" to lili, and there is NO doubt in either of our minds that she absolutely was trying to mimick it and say it back to us! and when she said it she'd look straight into our eyes and smile. we'd do this back and forth.
it was so amazing my eyes watered and i got goosebumps all over :)
and my heart swelled and melted and swooned.

all these little connections going off in her brain.
language!

she is growing out of all her hats! hats she used to swim in.
she's has had a huge growth spurt lately.
things that were so big on her just a bit ago are not going to fit her next week.

she has been in such a good mood lately. super duper smiley and giggly.
really vocal and social. it's been the most wonderful thing EVER.

she grabs things more and more. i gave her a little silk scarf today for her to hold and she loved to hold it and rub it on her face.

she holds her head up better now too, when we hold her in a sitting position.
she still doesn't hold her head up for too long at tummy time but she'll do it for a few seconds here and there
i really should do more tummy time with her but she doesn't like it.

her legs are super strong. when she finally gets to crawling she is going to be off like a rocket.

i'm making chicken soup with dumplings (making the broth now , i always make the broth from scratch, never use boullion)
and also i making saurkraut for this 1st time. i hope it turns out!

time to get a little more sleep....


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