Penny, I'm so sorry I got your two boys confused! I must admit that I am having trouble keeping all the new names and stories straight! I imagine in a short time you all will become so familiar to me that you will be like a second family. My apologies again! We saw our pediatrician today for Maiya's 6mo check up and discussed our experience with the geneticist. She is going to do some research for us and recommend another one. It will be interesting to see if she comes up with the group at Shands where you guys go. Take Care, Callie Mom to Cade 5yrs and Maiya T8M 6 months Sebastian, FL -------------- Original message from "Penny Victor" <pvictor@xxxxxxxxxx>: -------------- > 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 > Building ___ooOOoo__ Rainbows www.trisomyonline.org Families Helping Families On-line