Re: new sign on, baby w/ ChArGE.

[Guest guest]

Hi Tina,

Welcome to the list. Brittney sounds like a doll That first smile is so

important. I can remember Jack's as if it were yesterday.

I look forward to hearing more about your little girl.

Elaine mum to Elise (9 yrs) & Jack (4 yrs) CHaRGE

Dumfries, Scotland

[Guest guest]

Tina,

Welcome to the group. Your family sounds so sweet. I am glad you were able to

find the group. It can be somewhat lonely when you have no one to talk to who

has been through the same as you. But you will find so many hearts here to

share your story. I am happy to meet you. My name is Kris and I live in

Phoenix Arizona. I have three beautiful teenage daughters, - 16,

ie - 14, - 13. All healthy and without CHARGE. And my little

Angel, Austin who was born August 23, 1999, with CHARGE, he passed away

September 22, 1999. He had all the CHARGE defects. I belong to this group

and Chagre_Angels here in yahoo. They are both a wonderful source of help and

support. You will love it. Well, if you need anything don't hesitate to

ask. Take care.

Hugs

Kris - Mommy to (Austin - Aug 23, 1999 - Sept 22, 1999 CHARGE) - 16,

ie - 14, - 13

[Guest guest]

Tina,

Welcome (officially) to the list, I'm so glad you decided to sign on when I

mentioned it to you! We can't wait to hear more about Brittney, and don't be

shy about asking questions! I know F is from Virginia, but I'm not sure

if she's on the list right now. I'll forward this email to her, maybe you 2 can

hook up. I think Debra is also in Virginia if I'm not mistaken as well.

I'll see if I can get you connected.

Mom to Kennedy 3.5yr old CHARGEr, 12, 10, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

new sign on, baby w/ ChArGE.

It is great to know that there is something like this to where we all

can learn about each others CHARGE children. Brittney is 4 months old

and she was diagnosed with ChArGE when she was only 1 month old. She

has a g-tube and they just changed her Zantac to prilosec, it seems

to help her alot more than the zantac ever did, plus they increased

her reglan to 1cc. She learned to smile a couple of weekd ago and I

will tell you it really made my day, actually I just cried when she

did it. We are from Bristol, Va. and we really do not know anyone

near us that is or has gone through the same thing.

Tina (mom), (dad), Cody (18months),

and Brittney (ChArGE)4 months.

From Bristol, Va.

Membership of this email support groups does not constitute membership in the

CHARGE Syndrome Foundation.

For information about the CHARGE Syndrome

Foundation or to become a member (and get the newsletter)

please contact marion@... or visit

the CHARGE Syndrome Foundation web page

at http://www.chargesyndrome.org

6th International CHARGE Syndrome Conference, Cleveland, Ohio,

July 25-27, 2003. Information will be available at our website

www.chargesyndrome.org or by calling 1-.

[Guest guest]

tina, welcome to the group, those little things are so great aren't they?

we are in new jersey, I believe there is a family near you, but they aren't

on line now. hope you keep getting those smiles!!

maria, mom to timmy 6 ChARGE, keegan 3.5, and liam 1 wife to pat

new sign on, baby w/ ChArGE.

> It is great to know that there is something like this to where we all

> can learn about each others CHARGE children. Brittney is 4 months old

> and she was diagnosed with ChArGE when she was only 1 month old. She

> has a g-tube and they just changed her Zantac to prilosec, it seems

> to help her alot more than the zantac ever did, plus they increased

> her reglan to 1cc. She learned to smile a couple of weekd ago and I

> will tell you it really made my day, actually I just cried when she

> did it. We are from Bristol, Va. and we really do not know anyone

> near us that is or has gone through the same thing.

> Tina (mom), (dad), Cody (18months),

> and Brittney (ChArGE)4 months.

> From Bristol, Va.

>

>

>

> Membership of this email support groups does not constitute membership in

the CHARGE Syndrome Foundation.

> For information about the CHARGE Syndrome

> Foundation or to become a member (and get the newsletter)

> please contact marion@... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

> www.chargesyndrome.org or by calling 1-.

>

>

>

[Guest guest]

Tina,

My daughter was diagnosed with CHaRgE one day after

birth. I have two other children. One is 6 and the other is 3

months old ( is 17 months). I bet you have your hands full with

the two little ones, I know I do. Do you have a lot of follow up

visits with your little girl? What features does she have? I am

glad you mentioned the zantac-prilosec thing. got her g-tube

back in July, and she still gags and tries to throw up. Does your

daughter eat anything by mouth, or have they told you not to feed her

anything?

,

mother to Tyler(6),

(17 mo.)-CHaRgE, and Austin(3 mo.)

[Guest guest]

Tina,

Hello and welcome to the family. You will make a lot of friends here and get

any help you need with any questions you may have. We also live in VA

(Virginia Beach) and I have 2 CHARGEr's (Tryny is 7 and Zak is 2). I'm not

sure where Bristol, VA is (we only moved to VA in May) but if I can be of any

help, please don't hesitate to write. Both of my boys see doctors at

Children of the Kings Daughters Hospital.

Again, welcome and we are all here to help.

Debra

[Guest guest]

sarah,

Brittney watches scooby and the disney chipmunks, most of the time she

watches toon disney.

Tina

mom of Cody 18months, Brittney ChArgE 4months, Fiance to

[Guest guest]

Tina:

My daughter Ally is 3 years old and has CHARGE - we live in Bristol VA also.

There are 3 " charge families " in the tri-cities that I am aware of - you are

not alone.

There is a little girl in City and a little boy in Kingsport who are

both " high functioning " chargers. My little girl Ally has neurological

problems and her development has been much slower, BUT she has just started

home-bound preschool and is doing pool and horse therapy. Fell free to

contact me anytime.

Robin mom to Ally 3 CHARGE and Carson 13 mths

[Guest guest]

Hi Eve,

I don't know if Tyler loves music as much as

does, but they have Veggie Tales video tapes of just

the Silly Songs, and those are the ones she likes the

best at her age (2). The others have stories involved

that gets bored in. I got two of the tapes in a

2-pack at Sam's Club with my mother-in-law for about

$10.

Merry Christams Shopping!

--- Cammy Eve wrote:

> Hi all;

> Excellent Xmas gift idea for Tyler! I think he'd

> like the Veggie Tales.

> Thanks so much, I needed some cool thoughts!

> Take care, Eve

>

>

> >

> >Reply-To: CHARGE

> >To: CHARGE

> >Subject: Re: new sign on, baby w/ ChArGE.

> >Date: Thu, 15 Nov 2001 16:15:11 -0000

> >

> >I love veggi tales! (ok I relize im WAY to old for

> these videos but

> >they are good anyways) I am not relegious, but I

> still love it! I

> >love junour asparigus (sp?) He is sooooo cute hehe.

> Oh a good friend

> >of my family helped to make one of the veggi tales

> movies (the lie

> >from outer space)

> >

> > its nice to see im not the only person who knows

> about veggi

> >tales

> >

> >

> >Chantelle

> >

> >

> >

> > > Tina,

> > >

> > > loves Scooby, too. All my kids do. But

> 's

> > > very favorite is Larry the Cucumber from the

> Veggie

> > > Tales videos. In fact, " Larry " was one of her

> first

> > > words.

> > >

> > >

> >

> >

>

>

>

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> Get your FREE download of MSN Explorer at

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>

>

__________________________________________________

[Guest guest]

Tina welcome

I unfortunately do not get the chance to check my emails as frequently

as I would like. I just wanted to say welcome and let you know that this is

a great place to share info and ask questions. My family lives in

Pittsburgh, PA not to close to you but not far either. Please contact with

questions. Best of luck to you and your family. And let us know how

Brittany, you and your family are doing.

Chris(mom), Steve(dad) and Vicky(CHARGER age 2)