[tri-med] Re: pneumonia/intubation/futility/penny

Hello again Barb :o)
Yep I really DO understand...and I totally agree that we should all be on
our guard when our kids are sick and in the care of "strangers".
Today...while we were at the neurology clinic and Dr. Dinkla (yeah I
know...don't say it :o) was in talking to us I asked him out of curiosity if
he'd ever met another child with t13. He said no...never. I was impressed
though because he had an open mind...probably not easy to do when he's read
in medical texts what t13 is in the most clinical sense. To back
track...during the time before this appointment I have been both dreading it
AND looking forward to it. Dreading it because I figured he'd take one look
at Devon...see his DX...also see that he doesn't have seizures or anything
as yet. I just KNEW he'd look at him and ask..."so why are you
here...there's nothing to be done for him." Looking forward to it though
because I can't give up hope that there's help and someone who actually can
and wants to try and help...even knowing that there are no guarantees :o)

I think you're right...there are some that do not see our children as human
and it infuriates me and saddens me so much! I AM on my guard because I've
learned the hard way that not everyone loves and believes in my child and
his right to every thing a typical child is offered as I do and they don't
all keep an open mind :o( Kind of scary to think about all the close minded
individuals out there...
Keep on keeping on....I will if you will :o)

Love,
Penny...loving & devoted wife to Joe, the best husband in the world...mom to
Nick (16 yrs old...lover of Fishing, Dragons, Turtles, Blue Collar Comedy
Tour, RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon (11
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 10? 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.html      
AND...Devon's moment of glory in Exceptional Parent Magazine...
http://www.eparent.com/familiarfaces/ffaces_4_01.htm
AND...see our Trooper 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/
"Normal people worry me"
 


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

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