[tri-med] Re: Karen-apnea (Fawna)

----- Original Message ----- 
From: "Fawna" <fawna33@xxxxxxxxxxxxxx>

> >He said we may lose some speech....but Mari only has a couple of
> >sounds right now;  one of them is da-da though.
>
> Chris,
> And of course da-da is the exact word that Miss P lost the ability to
> say when we removed her adenoids at age 4.  Those gutteral sounds
> really need a firm surface to push the tongue against.  But she did
> suddenly regain the ability at like age 20.
>
> Fawna, mom to Philina 21 yrs (PT6p & Moya Moya Syndrome)

Fawna,

It's such a struggle, isn't it?  I don't want Mari to lose anything she's
worked to hard to gain.  Her sounds all seem to be guttural at the
moment.  She loves to growl.

When we quit gavage feeding & began using the feeding pump, we lost the
automatic
pottying trigger.  We haven't figured out her "schedule" to get pottying
everytime....
but we'll still keep putting her up there.  She loves to be the "big girl."

Chris mama to Mari full T18 (3  yrs.)
Tipp City, OH
http://photos.yahoo.com/MissTippCity
http://home.earthlink.net/~loganfamily/index.html

                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
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