[tri-med] Re: Hello

Hi Callie :o)
Nick is our oldest son (16) and Devon is our 12 yr little guy with T13 :o)
S'ok...I mixem' up all the time....heck I even call Trooper Devon and vice
versa :o)
I don't know the geneticists at Nemours...Devon's geneticist is Dr. Charlie
Williams...he's out of Shands and we see him through Children's Medical
Services. Our genetics counselor is Heather or Melissa (Heather has been
with us since the beginning...Melissa is a newbie :o) Dr. Williams and Dr.
Zori were very clinical (lets face it they're doctors) and not optimistic at
all in the beginning. Be prepared for that just in case. BUT...there's
hope...they're now more optimistic and among Devon's biggest fans and they
back us up with regard to treatment when other doctors don't want to treat
(and yes we still run into that mindset). Dr. Andrea Thorpe is Devon's
pediatrician and she's in Daytona...she's wonderful and very proactive!!!! I
don't like their PA their but her nurse Carol is great and so is Dr. Thorpe
:o) I'll try and remember to get you their contact info before I go in
tomorrow morning for surgery...gotta go...Devon needs his drink and his
shoes on, and his eye drops before the bus comes :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 (12
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...see our Trooper on FL Lab Rescue's website at:
http://www.labradorrescue.net/success/index.html (Look for the name
Trooper...page 4 or 5 right now) AND :o)
http://livingwithtrisomy13.org/album9.htm
AND http://web.coehs.siu.edu/Grants/TRIS/
"Faith sees the invisible, believes  the incredible & receives the
impossible"

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

Other related posts: