New here

[Guest guest]

Hello Sue

My name is my daughter Vicky, 21/2 yr old CHARGEr also has coloboma of

both eyes the right is far more significant. She was born with Tetrology of

Fallot, a heart condition which required surgery when she was 8 mos of age

and esophageal atresia ( which meant that her stomach and esphagus were not

connected but her esophagus and trachea were) which required surgery at 18

hrs of age. She also has a funny shaped right ear and is prone to ear

infections, but the tubes helped a lot.

She was born one month early and I had some problems during the pregnancy.

She spent 3 mos in the hospital. Required an aorta pexy ( sutured her

trachea to her breastbone) so her trachea wouldn't continue to collapse

cutting off her airway. Now she is doing very well. Walking, talking and

getting into all kinds of toddler trouble.

I understand how your DIL is feeling and if is very hard to talk about at

first. All you can do is be patient with her.

Please keep us posted on how everyone is doing.

And hang in there.

Huff - PA

Vicky 21/2 yr old CHARGEr

[Guest guest]

Hello Sue

My name is my daughter Vicky, 21/2 yr old CHARGEr also has coloboma of

both eyes the right is far more significant. She was born with Tetrology of

Fallot, a heart condition which required surgery when she was 8 mos of age

and esophageal atresia ( which meant that her stomach and esphagus were not

connected but her esophagus and trachea were) which required surgery at 18

hrs of age. She also has a funny shaped right ear and is prone to ear

infections, but the tubes helped a lot.

She was born one month early and I had some problems during the pregnancy.

She spent 3 mos in the hospital. Required an aorta pexy ( sutured her

trachea to her breastbone) so her trachea wouldn't continue to collapse

cutting off her airway. Now she is doing very well. Walking, talking and

getting into all kinds of toddler trouble.

I understand how your DIL is feeling and if is very hard to talk about at

first. All you can do is be patient with her.

Please keep us posted on how everyone is doing.

And hang in there.

Huff - PA

Vicky 21/2 yr old CHARGEr

[Guest guest]

Janet:

Thanks for the encouragement.

Re: New Here

Hi Sue,

Welcome. My charger turned 10 years old on May 7th. Those early days are a

blur now, but I do recall that they were very stressful and I didn't want to

*deal* with it. Once your DIL gets past that stage, she'll reach out for

help.

Janet

Mom to 10, 10 (CHaRGEr), nne 5

Mom to Debi 17, Brittany 16

Weymouth, Massachusetts

[Guest guest]

Janet:

Thanks for the encouragement.

Re: New Here

Hi Sue,

Welcome. My charger turned 10 years old on May 7th. Those early days are a

blur now, but I do recall that they were very stressful and I didn't want to

*deal* with it. Once your DIL gets past that stage, she'll reach out for

help.

Janet

Mom to 10, 10 (CHaRGEr), nne 5

Mom to Debi 17, Brittany 16

Weymouth, Massachusetts

[Guest guest]

Dear Sue,

I have an almost 1 year old CHARGEr (born 5/30/01). She also had bilateral

choanal atresia. Jillyan was fed via a gavage (spelling?) fed for 3 weeks

(she had heart surgery after the nose surgery). We experimented with

different nipples to find the one that was easiest for her. We still use

the NUK nipple by Playtex. They are shaped like a pacifier with a hole on

the top. Since the nipple goes further back into the throat and with the

hole on top it was easier for her to take her breast milk/formula. With the

other nipples the formula just ran out of her mouth and she got choked

easier. Within about 1 week of switching to this nipple she was on full

feeds and she was able to come home. Jillyan also had narrow passages in

her nose so it was a lot of work for her to use a bottle -- in other words

she was fed a bit more often than most kids because she would get so tired

from sucking on the bottle. We have had two additional laser surgeries to

reopen her nose and after the one this past December she started to put on

the pounds and now it is nothing for her to take in an 8 oz. bottle.

The NICU was very helpful in trying different nipples to see what worked

best for her. We were lucky in that she did not have any reflux once the

heart was repaired. Just wanted to pass on what worked for us and best of

luck to your family.

Huggins

Wife to Robin, Mom to Hailey (5) and Jillyan (11 mos)

New Here

Hello:

My name is Sue and I am the grandmother of Sierra who has just been

recently

diagnosed with charge. She is 19 days old today and still in the

hospital.

She has Choanal Atresia (she was operated on 10 days ago and is now off

the

ventilator. Her parents and I had a conference with the doctors last

Thursday and they told us their diagnosis. Needless to say we are still

in

a fog about the whole thing. But I am so very happy that you have a

website

where we can get information and talk to other parents that are going

through the same things.

My daughter in law is not ready to talk to all of you yet but I know

eventually she will be so grateful you all are here to talk to. My son

is

just dealing with all the paper work and working with the hospital to get

the baby set up with a regional center and all the specialists she will

have

to have. They have found that Sierra has one eye with slight Coloboma,

she

has 4 holes in her heart (which at least 2 they are hoping will close up

on

their own), She seems to have good elimination (urinary) so far. Plus her

left ear is a little deformed they haven't tested her hearing yet. I might

say also my DIL had a troublesome pregnancy thru the whole time plus

Sierra

was born 7 weeks early. she started sucking on a pacifier Friday and

doing

quite well with that but they went to feed her by bottle yesterday and she

didn't suck hard enough to get the milk out. They will try again today.

I

know that is normal for premie babies.

Thanks again for being here.

Sue Meckley

Boeing, Huntington Beach, Ca.

714 372-5128

[Guest guest]

Dear Sue,

I have an almost 1 year old CHARGEr (born 5/30/01). She also had bilateral

choanal atresia. Jillyan was fed via a gavage (spelling?) fed for 3 weeks

(she had heart surgery after the nose surgery). We experimented with

different nipples to find the one that was easiest for her. We still use

the NUK nipple by Playtex. They are shaped like a pacifier with a hole on

the top. Since the nipple goes further back into the throat and with the

hole on top it was easier for her to take her breast milk/formula. With the

other nipples the formula just ran out of her mouth and she got choked

easier. Within about 1 week of switching to this nipple she was on full

feeds and she was able to come home. Jillyan also had narrow passages in

her nose so it was a lot of work for her to use a bottle -- in other words

she was fed a bit more often than most kids because she would get so tired

from sucking on the bottle. We have had two additional laser surgeries to

reopen her nose and after the one this past December she started to put on

the pounds and now it is nothing for her to take in an 8 oz. bottle.

The NICU was very helpful in trying different nipples to see what worked

best for her. We were lucky in that she did not have any reflux once the

heart was repaired. Just wanted to pass on what worked for us and best of

luck to your family.

Huggins

Wife to Robin, Mom to Hailey (5) and Jillyan (11 mos)

New Here

Hello:

My name is Sue and I am the grandmother of Sierra who has just been

recently

diagnosed with charge. She is 19 days old today and still in the

hospital.

She has Choanal Atresia (she was operated on 10 days ago and is now off

the

ventilator. Her parents and I had a conference with the doctors last

Thursday and they told us their diagnosis. Needless to say we are still

in

a fog about the whole thing. But I am so very happy that you have a

website

where we can get information and talk to other parents that are going

through the same things.

My daughter in law is not ready to talk to all of you yet but I know

eventually she will be so grateful you all are here to talk to. My son

is

just dealing with all the paper work and working with the hospital to get

the baby set up with a regional center and all the specialists she will

have

to have. They have found that Sierra has one eye with slight Coloboma,

she

has 4 holes in her heart (which at least 2 they are hoping will close up

on

their own), She seems to have good elimination (urinary) so far. Plus her

left ear is a little deformed they haven't tested her hearing yet. I might

say also my DIL had a troublesome pregnancy thru the whole time plus

Sierra

was born 7 weeks early. she started sucking on a pacifier Friday and

doing

quite well with that but they went to feed her by bottle yesterday and she

didn't suck hard enough to get the milk out. They will try again today.

I

know that is normal for premie babies.

Thanks again for being here.

Sue Meckley

Boeing, Huntington Beach, Ca.

714 372-5128

[Guest guest]

welcome to the CHARGE list. My son is 6, and also had choanal atresia, a

hearing loss in both ears, blind in the left eye and developmentally delayed

fine and gross motor, and micro penis. It is so scary at first because of

all the what ifs and unknowns. But I think almost everyone here will agree,

no matter what the degree of disability these kids are strong and fight to

be the best they can be!!! The best thing they or you can do is keep in

contact with this group--they are my best friends and most of them I haven't

met, some I was lucky enough to meet at the last charge conference, but

whether I have met them or not, they have helped me through some rough

times,!!! I only wish I had found them sooner!!!

Timmy also had a nuk nipple the slow flow, and loved his binky---he was 7

days old before he had his first bottle, and we tried several nipples before

we got the right one, and it took FOREVER, just to get 2 oz down him. but he

did it quite well after a short while.

good luck to you all and big hugs and kisses to your new little sweetie, I

hope she sontinues to improve and is home quickly. Any and all questions or

concerns are welcome here, so ask away.

mom to Timmy 6 ChARGE, keegan 4, liam 19 mo. wife to pat

New Here

> Hello:

>

> My name is Sue and I am the grandmother of Sierra who has just been

recently

> diagnosed with charge. She is 19 days old today and still in the

hospital.

> She has Choanal Atresia (she was operated on 10 days ago and is now off

the

> ventilator. Her parents and I had a conference with the doctors last

> Thursday and they told us their diagnosis. Needless to say we are still

in

> a fog about the whole thing. But I am so very happy that you have a

website

> where we can get information and talk to other parents that are going

> through the same things.

>

> My daughter in law is not ready to talk to all of you yet but I know

> eventually she will be so grateful you all are here to talk to. My son

is

> just dealing with all the paper work and working with the hospital to get

> the baby set up with a regional center and all the specialists she will

have

> to have. They have found that Sierra has one eye with slight Coloboma,

she

> has 4 holes in her heart (which at least 2 they are hoping will close up

on

> their own), She seems to have good elimination (urinary) so far. Plus her

> left ear is a little deformed they haven't tested her hearing yet. I might

> say also my DIL had a troublesome pregnancy thru the whole time plus

Sierra

> was born 7 weeks early. she started sucking on a pacifier Friday and

doing

> quite well with that but they went to feed her by bottle yesterday and she

> didn't suck hard enough to get the milk out. They will try again today.

I

> know that is normal for premie babies.

>

> Thanks again for being here.

>

> Sue Meckley

> Boeing, Huntington Beach, Ca.

> 714 372-5128

>

>

>

> 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]

welcome to the CHARGE list. My son is 6, and also had choanal atresia, a

hearing loss in both ears, blind in the left eye and developmentally delayed

fine and gross motor, and micro penis. It is so scary at first because of

all the what ifs and unknowns. But I think almost everyone here will agree,

no matter what the degree of disability these kids are strong and fight to

be the best they can be!!! The best thing they or you can do is keep in

contact with this group--they are my best friends and most of them I haven't

met, some I was lucky enough to meet at the last charge conference, but

whether I have met them or not, they have helped me through some rough

times,!!! I only wish I had found them sooner!!!

Timmy also had a nuk nipple the slow flow, and loved his binky---he was 7

days old before he had his first bottle, and we tried several nipples before

we got the right one, and it took FOREVER, just to get 2 oz down him. but he

did it quite well after a short while.

good luck to you all and big hugs and kisses to your new little sweetie, I

hope she sontinues to improve and is home quickly. Any and all questions or

concerns are welcome here, so ask away.

mom to Timmy 6 ChARGE, keegan 4, liam 19 mo. wife to pat

New Here

> Hello:

>

> My name is Sue and I am the grandmother of Sierra who has just been

recently

> diagnosed with charge. She is 19 days old today and still in the

hospital.

> She has Choanal Atresia (she was operated on 10 days ago and is now off

the

> ventilator. Her parents and I had a conference with the doctors last

> Thursday and they told us their diagnosis. Needless to say we are still

in

> a fog about the whole thing. But I am so very happy that you have a

website

> where we can get information and talk to other parents that are going

> through the same things.

>

> My daughter in law is not ready to talk to all of you yet but I know

> eventually she will be so grateful you all are here to talk to. My son

is

> just dealing with all the paper work and working with the hospital to get

> the baby set up with a regional center and all the specialists she will

have

> to have. They have found that Sierra has one eye with slight Coloboma,

she

> has 4 holes in her heart (which at least 2 they are hoping will close up

on

> their own), She seems to have good elimination (urinary) so far. Plus her

> left ear is a little deformed they haven't tested her hearing yet. I might

> say also my DIL had a troublesome pregnancy thru the whole time plus

Sierra

> was born 7 weeks early. she started sucking on a pacifier Friday and

doing

> quite well with that but they went to feed her by bottle yesterday and she

> didn't suck hard enough to get the milk out. They will try again today.

I

> know that is normal for premie babies.

>

> Thanks again for being here.

>

> Sue Meckley

> Boeing, Huntington Beach, Ca.

> 714 372-5128

>

>

>

> 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]

Sue,

Welcome to the list, and congratulations on your new granddaughter. I am

so pleased you are able to gather information for your daughter in law & son at

such a difficult time. Things do eventually calm down although you are in for a

rough ride for awhile. It is very difficult to get the diagnosis of CHARGE and

then have them go through the list of " yep, she's got this, this this and maybe

this " ...it's very tough to deal with.

Kennedy is my daughter and she was born with bilateral choanal atresia, 4

heart defects, and every other letter of CHARGE as well and she is a happy 4 yr

old who spent half the morning running around the playground & climbing up

everywhere going down slides and laughing her head off. So, even though things

may seem very dim right now, it does eventually get better....(if you want to

see pictures of her, read about her " history " with CHARGE, etc, feel free to

visit our website listed below my signature)

Please give our best to your son & daughter in law and give little Sierra a hug

from our family...

~ Weir

Mom to Kennedy 4yr old CHARGEr, 12, 10, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at: http://personal.nbnet.nb.ca/gweir

ICQ #1426476

" In three words I can sum up everything I've learned about life: it goes on. "

- Frost

New Here

Hello:

My name is Sue and I am the grandmother of Sierra who has just been recently

diagnosed with charge. She is 19 days old today and still in the hospital.

She has Choanal Atresia (she was operated on 10 days ago and is now off the

ventilator. Her parents and I had a conference with the doctors last

Thursday and they told us their diagnosis. Needless to say we are still in

a fog about the whole thing. But I am so very happy that you have a website

where we can get information and talk to other parents that are going

through the same things.

My daughter in law is not ready to talk to all of you yet but I know

eventually she will be so grateful you all are here to talk to. My son is

just dealing with all the paper work and working with the hospital to get

the baby set up with a regional center and all the specialists she will have

to have. They have found that Sierra has one eye with slight Coloboma, she

has 4 holes in her heart (which at least 2 they are hoping will close up on

their own), She seems to have good elimination (urinary) so far. Plus her

left ear is a little deformed they haven't tested her hearing yet. I might

say also my DIL had a troublesome pregnancy thru the whole time plus Sierra

was born 7 weeks early. she started sucking on a pacifier Friday and doing

quite well with that but they went to feed her by bottle yesterday and she

didn't suck hard enough to get the milk out. They will try again today. I

know that is normal for premie babies.

Thanks again for being here.

Sue Meckley

Boeing, Huntington Beach, Ca.

714 372-5128

[Guest guest]

Sue,

Welcome to the list, and congratulations on your new granddaughter. I am

so pleased you are able to gather information for your daughter in law & son at

such a difficult time. Things do eventually calm down although you are in for a

rough ride for awhile. It is very difficult to get the diagnosis of CHARGE and

then have them go through the list of " yep, she's got this, this this and maybe

this " ...it's very tough to deal with.

Kennedy is my daughter and she was born with bilateral choanal atresia, 4

heart defects, and every other letter of CHARGE as well and she is a happy 4 yr

old who spent half the morning running around the playground & climbing up

everywhere going down slides and laughing her head off. So, even though things

may seem very dim right now, it does eventually get better....(if you want to

see pictures of her, read about her " history " with CHARGE, etc, feel free to

visit our website listed below my signature)

Please give our best to your son & daughter in law and give little Sierra a hug

from our family...

~ Weir

Mom to Kennedy 4yr old CHARGEr, 12, 10, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at: http://personal.nbnet.nb.ca/gweir

ICQ #1426476

" In three words I can sum up everything I've learned about life: it goes on. "

- Frost

New Here

Hello:

My name is Sue and I am the grandmother of Sierra who has just been recently

diagnosed with charge. She is 19 days old today and still in the hospital.

She has Choanal Atresia (she was operated on 10 days ago and is now off the

ventilator. Her parents and I had a conference with the doctors last

Thursday and they told us their diagnosis. Needless to say we are still in

a fog about the whole thing. But I am so very happy that you have a website

where we can get information and talk to other parents that are going

through the same things.

My daughter in law is not ready to talk to all of you yet but I know

eventually she will be so grateful you all are here to talk to. My son is

just dealing with all the paper work and working with the hospital to get

the baby set up with a regional center and all the specialists she will have

to have. They have found that Sierra has one eye with slight Coloboma, she

has 4 holes in her heart (which at least 2 they are hoping will close up on

their own), She seems to have good elimination (urinary) so far. Plus her

left ear is a little deformed they haven't tested her hearing yet. I might

say also my DIL had a troublesome pregnancy thru the whole time plus Sierra

was born 7 weeks early. she started sucking on a pacifier Friday and doing

quite well with that but they went to feed her by bottle yesterday and she

didn't suck hard enough to get the milk out. They will try again today. I

know that is normal for premie babies.

Thanks again for being here.

Sue Meckley

Boeing, Huntington Beach, Ca.

714 372-5128

[Guest guest]

Welcome Sue,

It is so nice to hear from you. My name is Roxanne and I have a 5 yr

old daughter(CHaRgEr)Her name is Katelyn. I also know that it is a

scary feeling for your DIL. I think that every one on this list has

been through the same feelings at one time or another. Your grand-

daughter sounds almost exactly like my daughter in the beginning.

The one difference is that Katelyn was born right on time! You can

visit Katelyn's web page, see her pics and read her story. I'll add

the address at the bottom after my name. To give your daughter some

hope... These children are remarkable. Every single one of them.

It takes a lot more courage from the parents...the children push us!

The adapt and keep us going with their triumphs. Katelyn is now 5

and goes to regular preschool and does everything that she wants to

do! There is no holding these special children back. She will take

you through a long journey, full of trials, errors, laughs and

complete triumphs and yes some tears, but through it all, just look

at that beautiful face and it will lead the way!

Roxanne mother to Katelyn 5(CHaRgEr),Kristopher 3 and wife to Don!

Please take a look at Katelyn's web site..

www.angelfire.com/pa5/katelyncharge

> Hello:

>

> My name is Sue and I am the grandmother of Sierra who has just been

recently

> diagnosed with charge. She is 19 days old today and still in the

hospital.

> She has Choanal Atresia (she was operated on 10 days ago and is now

off the

> ventilator. Her parents and I had a conference with the doctors

last

> Thursday and they told us their diagnosis. Needless to say we are

still in

> a fog about the whole thing. But I am so very happy that you have

a website

> where we can get information and talk to other parents that are

going

> through the same things.

>

> My daughter in law is not ready to talk to all of you yet but I know

> eventually she will be so grateful you all are here to talk to.

My son is

> just dealing with all the paper work and working with the hospital

to get

> the baby set up with a regional center and all the specialists she

will have

> to have. They have found that Sierra has one eye with slight

Coloboma, she

> has 4 holes in her heart (which at least 2 they are hoping will

close up on

> their own), She seems to have good elimination (urinary) so far.

Plus her

> left ear is a little deformed they haven't tested her hearing yet.

I might

> say also my DIL had a troublesome pregnancy thru the whole time

plus Sierra

> was born 7 weeks early. she started sucking on a pacifier Friday

and doing

> quite well with that but they went to feed her by bottle yesterday

and she

> didn't suck hard enough to get the milk out. They will try again

today. I

> know that is normal for premie babies.

>

> Thanks again for being here.

>

> Sue Meckley

> Boeing, Huntington Beach, Ca.

> 714 372-5128

[Guest guest]

Welcome Sue,

It is so nice to hear from you. My name is Roxanne and I have a 5 yr

old daughter(CHaRgEr)Her name is Katelyn. I also know that it is a

scary feeling for your DIL. I think that every one on this list has

been through the same feelings at one time or another. Your grand-

daughter sounds almost exactly like my daughter in the beginning.

The one difference is that Katelyn was born right on time! You can

visit Katelyn's web page, see her pics and read her story. I'll add

the address at the bottom after my name. To give your daughter some

hope... These children are remarkable. Every single one of them.

It takes a lot more courage from the parents...the children push us!

The adapt and keep us going with their triumphs. Katelyn is now 5

and goes to regular preschool and does everything that she wants to

do! There is no holding these special children back. She will take

you through a long journey, full of trials, errors, laughs and

complete triumphs and yes some tears, but through it all, just look

at that beautiful face and it will lead the way!

Roxanne mother to Katelyn 5(CHaRgEr),Kristopher 3 and wife to Don!

Please take a look at Katelyn's web site..

www.angelfire.com/pa5/katelyncharge

> Hello:

>

> My name is Sue and I am the grandmother of Sierra who has just been

recently

> diagnosed with charge. She is 19 days old today and still in the

hospital.

> She has Choanal Atresia (she was operated on 10 days ago and is now

off the

> ventilator. Her parents and I had a conference with the doctors

last

> Thursday and they told us their diagnosis. Needless to say we are

still in

> a fog about the whole thing. But I am so very happy that you have

a website

> where we can get information and talk to other parents that are

going

> through the same things.

>

> My daughter in law is not ready to talk to all of you yet but I know

> eventually she will be so grateful you all are here to talk to.

My son is

> just dealing with all the paper work and working with the hospital

to get

> the baby set up with a regional center and all the specialists she

will have

> to have. They have found that Sierra has one eye with slight

Coloboma, she

> has 4 holes in her heart (which at least 2 they are hoping will

close up on

> their own), She seems to have good elimination (urinary) so far.

Plus her

> left ear is a little deformed they haven't tested her hearing yet.

I might

> say also my DIL had a troublesome pregnancy thru the whole time

plus Sierra

> was born 7 weeks early. she started sucking on a pacifier Friday

and doing

> quite well with that but they went to feed her by bottle yesterday

and she

> didn't suck hard enough to get the milk out. They will try again

today. I

> know that is normal for premie babies.

>

> Thanks again for being here.

>

> Sue Meckley

> Boeing, Huntington Beach, Ca.

> 714 372-5128

[Guest guest]

Hello Sue.

Welcome to the list, I first want to say I love the name of Sierra I was going

to name that if he was not a boy.

My name is I have a 8year old son() who does not have a diagnosis of

charge but has many symptoms of charge and many other medical issues. He has a

coloboma in one eye and he has a abnormal kidney and bladder. He had his other

kidney taken out before he was 2 years old.

He had trouble with sucking the first 5 days after birth but they found a nipple

that he took fairly well. He has a under developed ear canal and hearing loss

in both ears. He is developmentaly delayed, He has trouble with swallowing food

and liquids so he is on a puree diet and thickened liquids. has had many

surgeries for different things but is doing very well. We do not have a

diagnosis at this time as for what excatally he has but I have been welcomed in

this group with open arms and have gotton alot of support from everone.

is my pride and joy I could not dream of a life with out him. I also had a

VERY BAD pregnance. I wish you the best of luck and congratulations on your

granddaughter.

mom to 8years.

New Here

Hello:

My name is Sue and I am the grandmother of Sierra who has just been recently

diagnosed with charge. She is 19 days old today and still in the hospital.

She has Choanal Atresia (she was operated on 10 days ago and is now off the

ventilator. Her parents and I had a conference with the doctors last

Thursday and they told us their diagnosis. Needless to say we are still in

a fog about the whole thing. But I am so very happy that you have a website

where we can get information and talk to other parents that are going

through the same things.

My daughter in law is not ready to talk to all of you yet but I know

eventually she will be so grateful you all are here to talk to. My son is

just dealing with all the paper work and working with the hospital to get

the baby set up with a regional center and all the specialists she will have

to have. They have found that Sierra has one eye with slight Coloboma, she

has 4 holes in her heart (which at least 2 they are hoping will close up on

their own), She seems to have good elimination (urinary) so far. Plus her

left ear is a little deformed they haven't tested her hearing yet. I might

say also my DIL had a troublesome pregnancy thru the whole time plus Sierra

was born 7 weeks early. she started sucking on a pacifier Friday and doing

quite well with that but they went to feed her by bottle yesterday and she

didn't suck hard enough to get the milk out. They will try again today. I

know that is normal for premie babies.

Thanks again for being here.

Sue Meckley

Boeing, Huntington Beach, Ca.

714 372-5128

[Guest guest]

Sue, this is from one grandmother to another, my son and his wife are in

Toronto and Iam in India, my grandson Aman was born in Vancouver,

and in April they have moved to Toronto, he is 7 months old, he just came

back form the hospital few days back. He was diagnosed as charge at 7 days.

My children have moved to Canada last April

and hence did not know too many people, they have been through all this on

their own, with only the emotional support we could give over the phone and

through emails..

Somehow while searching for information on charge I discovered this group,

and it is the best thing that has happened to us. You will get unlimited

support, information, love and care from this charge family. My children

also are coping with too much, so Iam on this list to gather information on

whatever they need to know and mail it to them regularly.

Initially one has a numb feeling till one learns to accept reality, perhaps

that is what your daughter in law is feeling right now. At this point of

time it will be hard for you to believe that you will feel better after

sometime, but it does happen.

My grandson has a G Tube and a J Tube, has had 2 laser surgeries, intubated

several times, he has choanal stenosis, undescended testes, one enlarged

kidney, colobama of the eyes, one malformed ear, cranial nerve problem, and

hypotonia.You can check out his photographs on

http://photos.yahoo.com/p_mehta71, as his website is still incomplete.

Time is a great healer so hold on and all will be fine, and dont forget that

Sierra has come into your family as God has confidence that she will get

utmost love and care.

Pushpa grandma to Aman 7 months

[Guest guest]

Sue, this is from one grandmother to another, my son and his wife are in

Toronto and Iam in India, my grandson Aman was born in Vancouver,

and in April they have moved to Toronto, he is 7 months old, he just came

back form the hospital few days back. He was diagnosed as charge at 7 days.

My children have moved to Canada last April

and hence did not know too many people, they have been through all this on

their own, with only the emotional support we could give over the phone and

through emails..

Somehow while searching for information on charge I discovered this group,

and it is the best thing that has happened to us. You will get unlimited

support, information, love and care from this charge family. My children

also are coping with too much, so Iam on this list to gather information on

whatever they need to know and mail it to them regularly.

Initially one has a numb feeling till one learns to accept reality, perhaps

that is what your daughter in law is feeling right now. At this point of

time it will be hard for you to believe that you will feel better after

sometime, but it does happen.

My grandson has a G Tube and a J Tube, has had 2 laser surgeries, intubated

several times, he has choanal stenosis, undescended testes, one enlarged

kidney, colobama of the eyes, one malformed ear, cranial nerve problem, and

hypotonia.You can check out his photographs on

http://photos.yahoo.com/p_mehta71, as his website is still incomplete.

Time is a great healer so hold on and all will be fine, and dont forget that

Sierra has come into your family as God has confidence that she will get

utmost love and care.

Pushpa grandma to Aman 7 months

[Guest guest]

Sue, I know how your DIL feels. I was told 8 yrs ago that my son should have

never been born. Then i was told that he wouldn't make it to age one. He just

tune 8 back in February.He is very healthy but has had his problems. He has

colabomas,heart problem,developmentaly delayed,atresia of cheaona,was born w/a

micro penis, & profoundly deaf with offset ears. He was born with a bilateral

cleft lip and palet. I have two other children 1 older & one younger.

Staci mother of Onya 10,Nicolas 8 (CHARGE), & 6, wife of .

---------------------------------

[Guest guest]

Sue, I know how your DIL feels. I was told 8 yrs ago that my son should have

never been born. Then i was told that he wouldn't make it to age one. He just

tune 8 back in February.He is very healthy but has had his problems. He has

colabomas,heart problem,developmentaly delayed,atresia of cheaona,was born w/a

micro penis, & profoundly deaf with offset ears. He was born with a bilateral

cleft lip and palet. I have two other children 1 older & one younger.

Staci mother of Onya 10,Nicolas 8 (CHARGE), & 6, wife of .

---------------------------------

[Guest guest]

Hi Sue,

My name is Kim. My son Dylan is almost 6. On the scale of things his

sensory issues are on the heavy end, and his medical issues on the light end

for CHARGE. He has no hearing and limited vision in one eye. Regardless he

thinks and learns and explores and communicates and is one joyful person.

Medically the nerve involvement is the most severe. He is still fed through

a g-tube, which doesn't bother him a bit. His balance is poor, but still he

walks independently. He was expected to have heart surgery, but the ASD (no

wall) completely closed on it's own. He has narrow canals everywhere, but

no atresia.

We were fortunate in that Dylan had most of his diagnoses in the span of one

week, with a diagnosis of CHARGE at the end of it at age 3 weeks. It was

one rough week with diagnosis after diagnosis. The worst for me was finding

out that he had only one kidney. Not because that was going to be his

biggest challenge (so far the easiest), but because there were no external

clues that would warn us that something was up. The ultrasound was done

solely because he had CHARGE, and they wanted to check out everything.

For me knowing was better than wondering. At least now I could learn, and

take care of Dylan as he needed to be cared for. Those first 2 weeks when

everyone kept trying to reassure me that everything was okay when I knew it

wasn't were very hard for me. Easy for the mommy in me to slip into denial,

but my nursing background kept screaming that something was major wrong.

Having a diagnosis was a relief.

For each of us those early days were so hard and filled with so much

learning and concern. On the list we offer hope that things do settle down,

and that life can still be good.

Kim

Mother of Dylan 6, Kayla 11, Tyler 14, wife of Roy

----------

>

>To: " CHARGE " <charge >

>Subject: Re: New Here

>Date: Tue, May 21, 2002, 7:27 AM

>

> Sue, this is from one grandmother to another, my son and his wife are in

> Toronto and Iam in India, my grandson Aman was born in Vancouver,

> and in April they have moved to Toronto, he is 7 months old, he just came

> back form the hospital few days back. He was diagnosed as charge at 7 days.

> My children have moved to Canada last April

> and hence did not know too many people, they have been through all this on

> their own, with only the emotional support we could give over the phone and

> through emails..

> Somehow while searching for information on charge I discovered this group,

> and it is the best thing that has happened to us. You will get unlimited

> support, information, love and care from this charge family. My children

> also are coping with too much, so Iam on this list to gather information on

> whatever they need to know and mail it to them regularly.

> Initially one has a numb feeling till one learns to accept reality, perhaps

> that is what your daughter in law is feeling right now. At this point of

> time it will be hard for you to believe that you will feel better after

> sometime, but it does happen.

> My grandson has a G Tube and a J Tube, has had 2 laser surgeries, intubated

> several times, he has choanal stenosis, undescended testes, one enlarged

> kidney, colobama of the eyes, one malformed ear, cranial nerve problem, and

> hypotonia.You can check out his photographs on

> http://photos.yahoo.com/p_mehta71, as his website is still incomplete.

> Time is a great healer so hold on and all will be fine, and dont forget that

> Sierra has come into your family as God has confidence that she will get

> utmost love and care.

> Pushpa grandma to Aman 7 months

>

>

>

>

>

>

> 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]

Hi Sue,

My name is Kim. My son Dylan is almost 6. On the scale of things his

sensory issues are on the heavy end, and his medical issues on the light end

for CHARGE. He has no hearing and limited vision in one eye. Regardless he

thinks and learns and explores and communicates and is one joyful person.

Medically the nerve involvement is the most severe. He is still fed through

a g-tube, which doesn't bother him a bit. His balance is poor, but still he

walks independently. He was expected to have heart surgery, but the ASD (no

wall) completely closed on it's own. He has narrow canals everywhere, but

no atresia.

We were fortunate in that Dylan had most of his diagnoses in the span of one

week, with a diagnosis of CHARGE at the end of it at age 3 weeks. It was

one rough week with diagnosis after diagnosis. The worst for me was finding

out that he had only one kidney. Not because that was going to be his

biggest challenge (so far the easiest), but because there were no external

clues that would warn us that something was up. The ultrasound was done

solely because he had CHARGE, and they wanted to check out everything.

For me knowing was better than wondering. At least now I could learn, and

take care of Dylan as he needed to be cared for. Those first 2 weeks when

everyone kept trying to reassure me that everything was okay when I knew it

wasn't were very hard for me. Easy for the mommy in me to slip into denial,

but my nursing background kept screaming that something was major wrong.

Having a diagnosis was a relief.

For each of us those early days were so hard and filled with so much

learning and concern. On the list we offer hope that things do settle down,

and that life can still be good.

Kim

Mother of Dylan 6, Kayla 11, Tyler 14, wife of Roy

----------

>

>To: " CHARGE " <charge >

>Subject: Re: New Here

>Date: Tue, May 21, 2002, 7:27 AM

>

> Sue, this is from one grandmother to another, my son and his wife are in

> Toronto and Iam in India, my grandson Aman was born in Vancouver,

> and in April they have moved to Toronto, he is 7 months old, he just came

> back form the hospital few days back. He was diagnosed as charge at 7 days.

> My children have moved to Canada last April

> and hence did not know too many people, they have been through all this on

> their own, with only the emotional support we could give over the phone and

> through emails..

> Somehow while searching for information on charge I discovered this group,

> and it is the best thing that has happened to us. You will get unlimited

> support, information, love and care from this charge family. My children

> also are coping with too much, so Iam on this list to gather information on

> whatever they need to know and mail it to them regularly.

> Initially one has a numb feeling till one learns to accept reality, perhaps

> that is what your daughter in law is feeling right now. At this point of

> time it will be hard for you to believe that you will feel better after

> sometime, but it does happen.

> My grandson has a G Tube and a J Tube, has had 2 laser surgeries, intubated

> several times, he has choanal stenosis, undescended testes, one enlarged

> kidney, colobama of the eyes, one malformed ear, cranial nerve problem, and

> hypotonia.You can check out his photographs on

> http://photos.yahoo.com/p_mehta71, as his website is still incomplete.

> Time is a great healer so hold on and all will be fine, and dont forget that

> Sierra has come into your family as God has confidence that she will get

> utmost love and care.

> Pushpa grandma to Aman 7 months

>

>

>

>

>

>

> 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]

Hi Sue,

My name is Kim. My son Dylan is almost 6. On the scale of things his

sensory issues are on the heavy end, and his medical issues on the light end

for CHARGE. He has no hearing and limited vision in one eye. Regardless he

thinks and learns and explores and communicates and is one joyful person.

Medically the nerve involvement is the most severe. He is still fed through

a g-tube, which doesn't bother him a bit. His balance is poor, but still he

walks independently. He was expected to have heart surgery, but the ASD (no

wall) completely closed on it's own. He has narrow canals everywhere, but

no atresia.

We were fortunate in that Dylan had most of his diagnoses in the span of one

week, with a diagnosis of CHARGE at the end of it at age 3 weeks. It was

one rough week with diagnosis after diagnosis. The worst for me was finding

out that he had only one kidney. Not because that was going to be his

biggest challenge (so far the easiest), but because there were no external

clues that would warn us that something was up. The ultrasound was done

solely because he had CHARGE, and they wanted to check out everything.

For me knowing was better than wondering. At least now I could learn, and

take care of Dylan as he needed to be cared for. Those first 2 weeks when

everyone kept trying to reassure me that everything was okay when I knew it

wasn't were very hard for me. Easy for the mommy in me to slip into denial,

but my nursing background kept screaming that something was major wrong.

Having a diagnosis was a relief.

For each of us those early days were so hard and filled with so much

learning and concern. On the list we offer hope that things do settle down,

and that life can still be good.

Kim

Mother of Dylan 6, Kayla 11, Tyler 14, wife of Roy

----------

>

>To: " CHARGE " <charge >

>Subject: Re: New Here

>Date: Tue, May 21, 2002, 7:27 AM

>

> Sue, this is from one grandmother to another, my son and his wife are in

> Toronto and Iam in India, my grandson Aman was born in Vancouver,

> and in April they have moved to Toronto, he is 7 months old, he just came

> back form the hospital few days back. He was diagnosed as charge at 7 days.

> My children have moved to Canada last April

> and hence did not know too many people, they have been through all this on

> their own, with only the emotional support we could give over the phone and

> through emails..

> Somehow while searching for information on charge I discovered this group,

> and it is the best thing that has happened to us. You will get unlimited

> support, information, love and care from this charge family. My children

> also are coping with too much, so Iam on this list to gather information on

> whatever they need to know and mail it to them regularly.

> Initially one has a numb feeling till one learns to accept reality, perhaps

> that is what your daughter in law is feeling right now. At this point of

> time it will be hard for you to believe that you will feel better after

> sometime, but it does happen.

> My grandson has a G Tube and a J Tube, has had 2 laser surgeries, intubated

> several times, he has choanal stenosis, undescended testes, one enlarged

> kidney, colobama of the eyes, one malformed ear, cranial nerve problem, and

> hypotonia.You can check out his photographs on

> http://photos.yahoo.com/p_mehta71, as his website is still incomplete.

> Time is a great healer so hold on and all will be fine, and dont forget that

> Sierra has come into your family as God has confidence that she will get

> utmost love and care.

> Pushpa grandma to Aman 7 months

>

>

>

>

>

>

> 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]

Hi Nicci and welcome to the group!

Hopefully you'll find some information here that will help you deal with the hashi's more. :-) And I know you've found a group of friendly people who are willing to listen and chat.

in LA

> >Reply-To: The_Thyroid_Support_Group >To: The_Thyroid_Support_Group >Subject: new here >Date: Sat, 14 Aug 2004 07:09:12 -0000 > >i hav ejust been dxed with hashimotos and am exhausted. i just >started thyrpoid treatment. think i just wanted to say hello an di am >here. >nicci

Don’t just search. Find. Check out the new MSN Search!

[Guest guest]

Hi Nicci and welcome to the group!

Hopefully you'll find some information here that will help you deal with the hashi's more. :-) And I know you've found a group of friendly people who are willing to listen and chat.

in LA

> >Reply-To: The_Thyroid_Support_Group >To: The_Thyroid_Support_Group >Subject: new here >Date: Sat, 14 Aug 2004 07:09:12 -0000 > >i hav ejust been dxed with hashimotos and am exhausted. i just >started thyrpoid treatment. think i just wanted to say hello an di am >here. >nicci

Don’t just search. Find. Check out the new MSN Search!

[Guest guest]

Hi Nicci and welcome to the group!

Hopefully you'll find some information here that will help you deal with the hashi's more. :-) And I know you've found a group of friendly people who are willing to listen and chat.

in LA

> >Reply-To: The_Thyroid_Support_Group >To: The_Thyroid_Support_Group >Subject: new here >Date: Sat, 14 Aug 2004 07:09:12 -0000 > >i hav ejust been dxed with hashimotos and am exhausted. i just >started thyrpoid treatment. think i just wanted to say hello an di am >here. >nicci

Don’t just search. Find. Check out the new MSN Search!

[Guest guest]

Welcome to the group! I have had hashi's for years now. I just had surgery 2

weeks ago to remove have of my thyroid. You can learn so much here and yes

things can get better.

" Dreams are the touchstones of our character. " Henry Thoreau

new here

> i hav ejust been dxed with hashimotos and am exhausted. i just

> started thyrpoid treatment. think i just wanted to say hello an di am

> here.

> nicci

>

>

>

>

>

>

[Guest guest]

Hi Nicci,

And welcome to the board. Hang around, you'll learn a lot. What medications are you taking?

Blessings,

Debbie K.

-----Original Message-----From: rainbowsliders Sent: Saturday, August 14, 2004 2:09 AMTo: The_Thyroid_Support_Group Subject: new herei hav ejust been dxed with hashimotos and am exhausted. i just started thyrpoid treatment. think i just wanted to say hello an di am here.nicci