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

thanks penny i thought that you or someone around there could help
gina son taylor triosmy 8 mosaic

---- Original Message ----
From: plugginalongpv@bellsouth=2Enet
To: tri-med@freelists=2Eorg
Subject: RE: [tri-med] Re: Penny - I have a trisomy 8 son
Date: Sun, 30 Jul 2006 10:10:04 -0400

>
>----- Original Message -----=20
>From: "Cindy Steele" <craftwork360@yahoo=2Ecom>
>Subject: [tri-med] Penny - I have a trisomy 8 son
>
>
>> Penny, Gina in Michigan said that you live in Florida and might
>have some=20
>> doctor contacts that we may contact regarding my trisomy 8 son,
>Charlie
>>  My son is 8yrs old, we live in Clearwater Florida=2E If you have any
>
>> suggestions about where we might go to have Charlie more fully
>evaluated,=20
>> please let us know=2E
>>
>
>Hi Cindy=2E=2E=2EGinger=2E=2E=2ECharlie :o)
>Yes=2E=2E=2Ewe live in DeLand Florida=2E=2E=2Eabout 15 miles inland from =
Daytona
>Beach=20
>:o) How far is Clearwater=3F=3F I can tell you who Devon's doctors are
>and you=20
>can take it from there :O)
>
>Devon's Geneticist is Dr=2E Charles (Charlie) Williams at Shands in=20
>Gainseville=2E=2E=2EI'm thinkin he may not have other T8 kids=2E=2E=2Eand=
 will be
>veru=20
>interested to know about him :o)
>
>Devon's/Ours Genetics Counselor since birth is Heather Stalker=2E=2E=2Esh=
e
>may be=20
>able to point you to more docs=2E=2E=2Eor you can ask her if Dr Williams
>can=20
>recommend some specialists in your area (her email address)=20
>stalkhj@peds=2Eufl=2Eedu You can ask her to foward your query to Dr
>Williams and=20
>she will :o) He also has a very nice Fellow/Resident assisting him
>these=20
>days=2E=2E=2Ewe met her last week at Devon's yearly followup=2E You'd hav=
e to
>ask=20
>Heather what her name is=2E=2E=2Eshe is Indian I believe and she was
>introduced to=20
>me but Devon was in butthead mode and I didn't get it :o)
>
>Dr=2E Brent Seigle was his Plastic Surgeon when he had his Cleft Palate
>fixed=20
>at age 2=2E=2E=2Ealso at Shands
>
>Dr=2E Kosko at Nemours in Orlando is Devon's ENT
>
>Dr=2E Gruenburg is his current Opthalmologist in Altamonte Springs
>
>Dr Blumenfeld was his Opthalmologist before (He WAS in Orlando=2E=2E=2Ebu=
t
>not=20
>sure where he is now=3F) not sure if he's through CMS or Nemours
>anymore=3F=3F=3F
>
>He sees a Pulmonologist through CMS in DeLand and to be honest I
>can't=20
>remeber what his name is this second=3F=3F
>
>He also sees an Orthopedic doc through CMS in DeLand=2E=2E=2Ebut he sees
>him so=20
>seldom I don't know who he is=3F=3F
>
>OK=2E=2E=2Ethink think think=2E=2E=2Ewho else=3F=3F=3F=3F=3F
>
>Dr Chaet in Orlando did abdominal surgey on Devon once=2E=2E=2Einguenal
>hernia=20
>repair=2E He was great :o)
>
>If any of these interest you just ask and I'll see if I can find
>addresses=20
>and phone numbers :o) I also have a friend in Lake Helen who's 1 1/2
>year=20
>old son Colton has more and different issues then Devon=2E If you'd
>like their=20
>email addy just ask :o) I also have a contact near Tampa=2E=2E=2Eactually=

>the=20
>Csontos near Tampa could give you some contacts too I'm sure :O)
>
>Hope this helps at least a little=3F=3F=3F
>
>Love,
>Penny=2E=2E=2Eloving & devoted wife to Joe, the best husband in the
>world=2E=2E=2Emom to=20
>Nick (15 yrs old=2E=2E=2Elover of Fishing, Dragons, Turtles, Blue Collar
>Comedy=20
>Tour, RollerCoasters, Chocolate Icecream w/ Ovaltine sprinkles, Devon
>(11=20
>yrs=2E=2E=2Elover of Barney, Blue, Nappy ol' Bear w/dreadlocks, Pooh, Elm=
o,
>& food=20
>in general=2E Full trisomy 13 w/balanced translocation 5 and 13) , and
>Trooper=20
>the Wonder Dog=2E=2E=2Eour 9 =3F year old yellow lab adopted from FL Lab
>Rescue=20
>12/13/02 :o)
>Please visit the webpage my wonderful friend Karen made for me on our
>
>trisomy listserv at:
>http://www=2Etrisomyonline=2Eorg/victor=2Ehtm
>AND=2E=2E=2EDevon's moment of glory in Exceptional Parent Magazine=2E=2E=2E=

>http://www=2Eeparent=2Ecom/familiarfaces/ffaces=5F4=5F01=2Ehtm
>AND=2E=2E=2Esee our Trooper on FL Lab Rescue's website at:
>http://www=2Elabradorrescue=2Enet/success/index=2Ehtml (Look for the name=

>Trooper)
>AND :o) http://livingwithtrisomy13=2Eorg/album9=2Ehtm
>AND http://web=2Ecoehs=2Esiu=2Eedu/Grants/TRIS/
>"We love the things we love for what they are"
>Robert Frost
>
>
>
>
>
>                  Building =5F=5F=5FooOOoo=5F=5F Rainbows
>                       www=2Etrisomyonline=2Eorg
>                  Families Helping Families On-line
>


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

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