[tri-med] Re: Introducing Keren Elyse


>>>>>>My husband Kraig and I have been lurking on the listserve for about a
month now, planning to jump in at some point and introduce
ourselves--figured Christmas was as good a time as any :) .<<<<<<

Welcome and glad you found us, I am so Happy that Keren is doing so well. my
reason for being here is my daughter Rebecca who is 11 1/2 yrs old and has
Trisomy 18 moasaic.  we did not know of her problems until she was born.


>>>>>.  She also has a contracted hand>>>>>>

the hands being clenched are a classic t18 thing, Rebecca's were very tight
when she was born and they did loosen up well, not "normal" but very
functional


>>>>.  Recently, Keren's been
fighting just about every bottle, squirming, batting, crying--and it's
been a struggle to make sure she gets her minimum daily requirement>>>>>.


Rebecca came home with a NG tube ( through the nose) we did bottle her and
then tube the remainder for the first 3 months, it was a constant battle to
get her to take much from the bottle she would fight it the whole way. at 3
months she had a swallow study done and it showed that she was aspirating
liquids into her lungs, so we stopped trying to bottle her and relied on the
tube, we did feed her solids when it was time as it was only thin liquids
that were the problem.( not that we had much success with them)  when she
was 15 mo old she had her first G-tube and we love it.  we gave up trying to
feed her baby food when she was 6 as it was such a battle and she would
never take much anyway ( I knew we would never get her off the g-tube)


.
?>>>>>>>She does get hungry, but is satisfied after about 20 cc's (and she
should be taking about 3 oz per feeding)<<<<<<<

sometimes they stop feeding because its very tiring esp. if they are having
trouble breathing due to congestion ( I can't really remember how much of a
problem congestion was for Rebecca but we did run the humidifier in her room
all winter)

>>>>>.Usually, though, she's very quiet and content when she's not
eating--alert, or sleeping.<<<<<<

that's great!!!!!! so many T18 kids are very cranky the first year, Rebecca
cried for her first year, we called her "little miss misery"

>>>>>So that's where we're at today.  And I guess we're partly putting this
out, both as a greetings and introduction, and a plea for any
experience and advice that you all can provide<<<<<<,

so glad to meet you and so glad you found us, you will certainly get lots of
advice here!


Don't fight with dragons for you are crunchy and good with ketchup


Susan mom to Rebecca T18 M age 11 1/2 and Mark ADD/LD age 10 1/2

Ontario Canada





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