My son was recently diagnose with Charge

[Guest guest]

Hello, everyone, my name is , my son was recently diagnose

with Charge. was born with many little things that needed

fixing. He underwent open heart surgery when he was 7 days old. He

also had gastroesophagal reflux, cleft lip and palette, Graded 5

reflux on the right kidney. He spent many months in the NICU at

UCLA. He underwent many tests among all of them a three genetic tests

which came back negative. is a beautiful one year old now, full

of life and who has given me a lot of joy. It was until now that he

has been diagnosed and I just need some help to help be the best

he can be. I thank you in advance for any tips and information.

Thank you.

[Guest guest]

Welcome to the family ,

Congrats on . You'll find someone here that probably knows something on

any questions you ask, or knows where to find an answer.

We are also here to brag, complain, vent and just be here for anything. and the

kids ranges in age from lil infants to adults. We have quite a few adults on the

list that have CHARGE who help us parents immensely understand our children.

My son is 15 and a half, facial palsy,typical CHARGE ears, hearing loss, cleft

lip and palate, slight vocal cord paralysis, heart murmur, pulmonary problems,

genital malformations, on growth hormone therapy and testosterone.... and is a

sophmore in HS in reg ed carrying a B average

Casey

Mom to Dawn 28 HH, Ken 18 ADHD and 15 CHARGE

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[Guest guest]

Hi, casey thank you for your e-mail. Sometimes I just feel overwhelmed because

I don't know what is going to happen next. However, is doing great, he

had to undergo hip surgery because he had hip dysplacia. He is now wearing a

cast from his nipples down to his ankles. He is such a good sport and the light

of my eyes. Once again thank you.

Casey Fisher aarididdle@...> wrote: Welcome to the family ,

Congrats on . You'll find someone here that probably knows something on any

questions you ask, or knows where to find an answer.

We are also here to brag, complain, vent and just be here for anything. and the

kids ranges in age from lil infants to adults. We have quite a few adults on the

list that have CHARGE who help us parents immensely understand our children.

My son is 15 and a half, facial palsy,typical CHARGE ears, hearing loss, cleft

lip and palate, slight vocal cord paralysis, heart murmur, pulmonary problems,

genital malformations, on growth hormone therapy and testosterone.... and is a

sophmore in HS in reg ed carrying a B average

Casey

Mom to Dawn 28 HH, Ken 18 ADHD and 15 CHARGE

-

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[Guest guest]

Hi , welcome to the listserv and congrats on the birth of . I

look forward to hearing many more stories about him. It sounds like he is

doing great, feel free to ask any questions you have or just vent and share.

There's also a picture page where many of the kids are featured - if you

want to add , send me a picture of him privately to

kawfolks@... I'll add him. The address for the pictures is:

http://www.imagestation.com/album/?id=2117043995

Cheers,

--

Weir

Personal Web Site:

http://chargesyndrome.info

The Adventures of Kennedy Blog:

http://chargesyndrome.blogspot.com

Secretary, CHARGE Syndrome Foundation Inc:

http://www.chargesyndrome.org

Email:

lisa@...

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

[Guest guest]

welcome to the group I have a almost 12 yr old ChARGER. he is blind in his left

eye mild to moderate loss left ear severe/profound rt. developmental delays

fine gross motor delays but smart as a whip, cute as can be and I wouldn't have

him any other way---he does have some ocd and anxiety issues--and a few behavior

but not bad. he goes to a school for the deaf and hard of hearing.

mom to timmy almost 12 ChARGE, keegan 9, liam 6 wife to pat

My son was recently diagnose with Charge

Hello, everyone, my name is , my son was recently diagnose

with Charge. was born with many little things that needed

fixing. He underwent open heart surgery when he was 7 days old. He

also had gastroesophagal reflux, cleft lip and palette, Graded 5

reflux on the right kidney. He spent many months in the NICU at

UCLA. He underwent many tests among all of them a three genetic tests

which came back negative. is a beautiful one year old now, full

of life and who has given me a lot of joy. It was until now that he

has been diagnosed and I just need some help to help be the best

he can be. I thank you in advance for any tips and information.

Thank you.

[Guest guest]

-

My daughter had hip surgery a few years ago and had the same kind of cast.

It wasn’t as awful as I anticipated. I hope things go smoothly for you as

well.

Glad to have you in our CHARGE “family”!

My daughter, Aubrie, is 9 yrs old. She had heart surgery (coarctation of

the aorta and PDA) at 8 days. Later she had a G-tube which was removed when

she was about 1 ½ yrs. She had GE reflux but outgrew it. She had surgery

for a submucous cleft palate a few years ago. She has hearing loss, had

middle ear reconstruction and a BAHA implant last year. She’s had many eye

surgeries – for glaucoma, strabismus, and a few others minor things. She

has decent vision in her right eye but very limited vision in her left. She

runs, jumps, dances, plays, cooks, rides horses, and loves music, Broadway,

and babies. She’s entering 4th grade. She went to regular school with an

aide until last year. Last year, she went to our school for the deaf. For

4th grade, she’ll go to the deaf school in the morning and our local school

in the afternoon. We’re lucky to live close enough for that option.

I look forward to getting to know more about your family and .

Michele W

mom to Aubrie 9 yrs CHaRgE and 15 yrs, wife to DJ

[Guest guest]

--Good evening . I am the father of Sierra, 5 years old.

Kainan, 2 years of old, does not have CHARGE. We also live here in

Los Angeles. Sierra has most of her doctors at CHLA (Children's

Hospital Los Angeles), where she was immediately transported to after

birth. Recently she has been seen by a few doctors at Cedar Sinai as

well. Our story is too long to list here on the list. I'm quite bias

but I highly refer you to my wife, Eloisa. She is Sierra's primary

advocate and caretaker as I work. She is quite aware of the 'good

fight', is full of tips, advice and resources in the LA area.

Furthermore the CHARGE conference is coming to Costa Mesa in two

weeks. We are going and have went to one in the past in Ohio. They

are a wealth of information. Please contact my private email and I

will get you in contact with Elo and the conference if she doesn't

get in touch with you before. - In

CHARGE , " Weir " wrote:

>

> Hi , welcome to the listserv and congrats on the birth of

. I

> look forward to hearing many more stories about him. It sounds

like he is

> doing great, feel free to ask any questions you have or just vent

and share.

> There's also a picture page where many of the kids are featured -

if you

> want to add , send me a picture of him privately to

> kawfolks@... I'll add him. The address for the pictures is:

> http://www.imagestation.com/album/?id=2117043995

> Cheers,

>

>

> --

> Weir

>

> Personal Web Site:

> http://chargesyndrome.info

>

> The Adventures of Kennedy Blog:

> http://chargesyndrome.blogspot.com

>

> Secretary, CHARGE Syndrome Foundation Inc:

> http://www.chargesyndrome.org

>

> Email:

> lisa@...

>

> " It is far better to grasp the universe as it really is than to

persist in

> delusion, however satisfying and reassuring. " --Carl Sagan

>

>

>

[Guest guest]

Welcome ,

My name is Crystal and I have a 2 year old daughter with CHARGE her

name is Eva. She had and ASD and PDA of the heart (2 heart sugeries),

facial paralysis, hearing loss, colubomas of the eyes, one kidney, and

feeding issues. It sounds like is doing pretty well, Eva is not

walking or sitting up yet, but I just take it one day at a time.

I hope you can make yourself at home here and feel free to ask anything

you have questions on.

Crystal and Eva

>

> Hello, everyone, my name is , my son was recently diagnose

> with Charge. was born with many little things that needed

> fixing. He underwent open heart surgery when he was 7 days old. He

> also had gastroesophagal reflux, cleft lip and palette, Graded 5

> reflux on the right kidney. He spent many months in the NICU at

> UCLA. He underwent many tests among all of them a three genetic

tests

> which came back negative. is a beautiful one year old now,

full

> of life and who has given me a lot of joy. It was until now that he

> has been diagnosed and I just need some help to help be the

best

> he can be. I thank you in advance for any tips and information.

> Thank you.

>