[tri-med] Re: Just Have To Share Alex is eating apples!!!

----- Original Message ----- 
From: "Karen" <karens@xxxxxxxxxxxxxxxx>
Subject: [tri-med] Re: Just Have To Share Alex is eating apples!!!


> I guess I look at it a different way - a swallow study is what an hour? in
> his life and while its horrid tasting stuff its not exactly invasive. Why
> subject him to a lifetime of thickened liquids and restrictive foods if he
> doesn't need it? Health and safety come first of course - but if he's 
> safe??

I agree Karen...I asked his doctor because I was thinking "gee wouldn't it 
be nice if he didn't have to have his liquids thickened??"...I really 
believe it was completely related to insurance. I may very well get a 
different answer now that he's straight medicaid. But then that particular 
doctor told me he would "most  likely always have dysphagia to a certain 
degree." My usual reaction to someone making a blanket statement without 
anything to back it up is to do the opposite of what they're telling me :o) 
Soooo....it ain't over...I WILL be asking again :o) The same thing happened 
with the ABR. Hearing doesn't get better and the medical profession doesn't 
make those kind of mistakes (I heard both those things)...after all, he DOES 
have T13 and don't ALL T13 kids have hearing issues???....WRONG!!!!! In 
other words, either the medical professionals were wrong with their original 
Dx with regard to Devon's hearing or his hearing improved...which it was is 
up for debate...but in either case SOMEONE was wrong. The best outcome for 
Devon was going through the test (even though it was a tough one for all of 
us)...now he doesn't have to be bothered with people trying to force him to 
wear hearing aids he doesn't need :o)Bottom line...I WILL be speaking to a 
doctor about his Dysphagia again :o


Love,
Penny...loving & devoted wife to Joe, the best husband in the world...mom to 
Nick (14 yrs old...lover of Fishing, Dragons, Turtles, Yu Gi Oh, 
RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (10 
yrs...lover of Barney, Blue, Nappy ol' Bear w/dreadlocks, Elmo, & food in 
general...Full trisomy 13 w/balanced translocation 5 and 13) , and Trooper 
the Wonder Dog...our 9 ? year old yellow lab adopted from FL Lab Rescue 
12/13/02 :o)
Please visit the webpage my wonderful friend Karen made for me on our 
trisomy listserv at...
http://www.trisomyonline.org/victor.htm
AND...Devon's moment of glory in Exceptional Parent Magazine...
http://www.eparent.com/familiarfaces/ffaces_4_01.htm
AND...see our 3 boys on FL Lab Rescue's website at:
http://www.labradorrescue.net/success/index.html (Look for the name Trooper)
AND :o) http://livingwithtrisomy13.org/album9.htm

AND http://web.coehs.siu.edu/Grants/TRIS/
"The stone that the builders did not want became the cornerstone." (Psalms 
118:22)


                  Building ___ooOOoo__ Rainbows
                       www.trisomyonline.org
                  Families Helping Families On-line

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