[tri-med] Re: Penny - I have a trisomy 8 son

----- Original Message ----- 
From: "Cindy Steele" <craftwork360@xxxxxxxxx>
Subject: [tri-med] Penny - I have a trisomy 8 son


> Penny, Gina in Michigan said that you live in Florida and might have some 
> doctor contacts that we may contact regarding my trisomy 8 son, Charlie.
>
>  My son is 8yrs old, we live in Clearwater Florida. If you have any 
> suggestions about where we might go to have Charlie more fully evaluated, 
> please let us know.
>

Hi Cindy...Ginger...Charlie :o)
Yes...we live in DeLand Florida...about 15 miles inland from Daytona Beach 
:o) How far is Clearwater?? I can tell you who Devon's doctors are and you 
can take it from there :O)

Devon's Geneticist is Dr. Charles (Charlie) Williams at Shands in 
Gainseville...I'm thinkin he may not have other T8 kids...and will be veru 
interested to know about him :o)

Devon's/Ours Genetics Counselor since birth is Heather Stalker...she may be 
able to point you to more docs...or you can ask her if Dr Williams can 
recommend some specialists in your area (her email address) 
stalkhj@xxxxxxxxxxxx You can ask her to foward your query to Dr Williams and 
she will :o) He also has a very nice Fellow/Resident assisting him these 
days...we met her last week at Devon's yearly followup. You'd have to ask 
Heather what her name is...she is Indian I believe and she was introduced to 
me but Devon was in butthead mode and I didn't get it :o)

Dr. Brent Seigle was his Plastic Surgeon when he had his Cleft Palate fixed 
at age 2...also at Shands

Dr. Kosko at Nemours in Orlando is Devon's ENT

Dr. Gruenburg is his current Opthalmologist in Altamonte Springs

Dr Blumenfeld was his Opthalmologist before (He WAS in Orlando...but not 
sure where he is now?) not sure if he's through CMS or Nemours anymore???

He sees a Pulmonologist through CMS in DeLand and to be honest I can't 
remeber what his name is this second??

He also sees an Orthopedic doc through CMS in DeLand...but he sees him so 
seldom I don't know who he is??

OK...think think think...who else?????

Dr Chaet in Orlando did abdominal surgey on Devon once...inguenal hernia 
repair. He was great :o)

If any of these interest you just ask and I'll see if I can find addresses 
and phone numbers :o) I also have a friend in Lake Helen who's 1 1/2 year 
old son Colton has more and different issues then Devon. If you'd like their 
email addy just ask :o) I also have a contact near Tampa...actually the 
Csontos near Tampa could give you some contacts too I'm sure :O)

Hope this helps at least a little???

Love,
Penny...loving & devoted wife to Joe, the best husband in the world...mom to 
Nick (15 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, Pooh, 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 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/
"We love the things we love for what they are"
Robert Frost





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

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