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Hi and welcome to the listserv. I'm so glad you found us. Have you found a

geneticist familiar with CHARGE? There is a test they can do now (they found a

genetic causation just last year). You might be interested in having your son

tested. Is it the eye symptoms you're wondering about? What exactly does your

son have? My daughter, who is seven has bilateral colobomas on her optic nerves.

She does have some vision loss & issues. It sounds like you might be talking

about micropthalmia. I'm looking forward to hearing more about your little

sweetheart. If you need someone to chat to, my phone number is below..

Weir

Home: lisaweir@...

Work: lisa.weir@...

Phone:

Web Site: http://ca.geocities.com/weirfamilyrogers

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it's not just the eye problem but because it's the most outwardly noticeable of

all his symptoms at the moment it's just the one thats bothering me, I already

get people give him strange looks when they coo over him i mean to me it';s not

a problem.

As to what degre it is i'm not really up on medical terms and what i was told

about Tyrese's eye is that it never developed that the seem of the eye never

formed.

in regards to the test he did have a chromosomes test which came back normal but

his pedertriction does want to refer us to geneticist but has not done so as

yet, but he seems quite fimiliar with charge.

Weir wrote:

Hi and welcome to the listserv. I'm so glad you found us. Have you found a

geneticist familiar with CHARGE? There is a test they can do now (they found a

genetic causation just last year). You might be interested in having your son

tested. Is it the eye symptoms you're wondering about? What exactly does your

son have? My daughter, who is seven has bilateral colobomas on her optic nerves.

She does have some vision loss & issues. It sounds like you might be talking

about micropthalmia. I'm looking forward to hearing more about your little

sweetheart. If you need someone to chat to, my phone number is below..

Weir

Home: lisaweir@...

Work: lisa.weir@...

Phone:

Web Site: http://ca.geocities.com/weirfamilyrogers

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welcome its good you have someone whos familiar with charge ive got the

colibomas and did have a heart murmer which has gone by now im doing well

now im nineteen and very hapy i am very prominat member of this list hugs

and talk soon ellen

>

> it's not just the eye problem but because it's the most outwardly

> noticeable of all his symptoms at the moment it's just the one thats

> bothering me, I already get people give him strange looks when they coo over

> him i mean to me it';s not a problem.

> As to what degre it is i'm not really up on medical terms and what i was

> told about Tyrese's eye is that it never developed that the seem of the eye

> never formed.

> in regards to the test he did have a chromosomes test which came back

> normal but his pedertriction does want to refer us to geneticist but has not

> done so as yet, but he seems quite fimiliar with charge.

>

> Weir wrote:

> Hi and welcome to the listserv. I'm so glad you found us. Have you found a

> geneticist familiar with CHARGE? There is a test they can do now (they found

> a genetic causation just last year). You might be interested in having your

> son tested. Is it the eye symptoms you're wondering about? What exactly does

> your son have? My daughter, who is seven has bilateral colobomas on her

> optic nerves. She does have some vision loss & issues. It sounds like you

> might be talking about micropthalmia. I'm looking forward to hearing more

> about your little sweetheart. If you need someone to chat to, my phone

> number is below..

>

>

> Weir

> Home: lisaweir@...

> Work: lisa.weir@...

> Phone:

> Web Site: http://ca.geocities.com/weirfamilyrogers

>

>

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Guest guest

Hi and welcome. This is a great place to be. In reading Alissa's post I

was reminded to tell all the new CHARGE parents that although this is a great

place to be there's more! I really recomend getting the CHARGE Manual. Go to

the CHARGE Foundation website and scroll down. As Alissa said keeping notes

on all the medical visits are important but there is an area in the manual

for that-in one spot! It also provides tons of information about everything

and it is right there at your hands. It only costs 25 dollars but it is worth

it's weight in gold. I have used it so often I think I need another one!

Bonnie, Mom to Kris 22, Patty CHARGE 20, and wife to

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Guest guest

Hi and I'm glad you found this group so soon. It will make a difference.

My son is 2.5 yrs and has coloboma of his retina which gives him a

field of vision

loss, like a big spot in the center of his eye. This only effects his left eye,

but that eye is

much smaller than the " normal " eye. It also travels in a little because it's not

a healthy eye.

He's far sighted and has worn glasses since he was 9mths. Yes, they can check

and an

Optomologist is someone your child should probably see.

I think it's most important right now for you to focus on the health related

stuff. I know

your mind is spinning with what the future holds for your son, but you can only

take in so

much at one time. I had a hard time with this myself, but I wish someone had

told me this.

The first year and a half was the hardest. Just trying to keep my

breathing.

Having said that, get him to an Audiologist as soon as he's well enough. I

waited because I

was just so medically focused and he didn't get his hearing aids until 18 mths.

I know a

little boy (not CHARGE) who got his aids at 8 weeks and he's had really no delay

in speech.

I think another thing you should be aware of is the swallowing and reflux

problems that so

often seem to go along with CHARGE. I wouldn't hesitate to ask questions about

this.

It's great that your doctor knows about CHARGE I've had to educate many doctors.

I would

still go see a Geneticist, ours had so much information that I hadn't found

anywhere else.

We had so much going on that first year or so I kept I binder with me to keep

everything

in. All the new vocabulary was overwhelming and we had to go to a different

appointment

everyday. I called that binder " my sanity " .

now signs and is starting to speak. He started walking at two years and

now

runs/wobbles/runs everywhere. He knows all his colors and counts to 10 and signs

his

abc's. Oh and he knows all the moves to all the Wiggles songs. He'll be 3 in

August.

You will make it through this with the help of these wonderful people in this

group.

I never post, just read, and know I feel I've given you a novel. I just felt so

alone in the

beginning and I never want anyone else to feel that way.

Good luck

I will pray for you as a pray for all those affected by CHARGE.

Alissa

mom to many including my ChARGEr

> hi i have a one month old son who i have just been told has charge.

> i'd never heard of this syndrome before and dispite much research am

> ffindin it difficult to fully understand what charge is.

> I know the dr's have come to this diagnosis beacuse of several birth

> defects my son has but am still struggling to understand the rest of

> the implications the syndrome can have.

> My son's symptons are a heart mumour (this is still under

> investigation), hearing loss (not yet sure of how much hearin he

> does/doesn't have, small genetals and an under developed eye which he

> is blind in.

> if there is anyone else out there that is older or has an older child

> with the last of my son's symptons i would like to hear from you to

> know how it effects them/your child.

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Guest guest

Thank you so much for your insight how you felt is how I felt till i found this

wondeful group.

My son's eye problem is also in his left eye and like your son his eye is very

much smaller the only difference is that he is completly blind in it.

My son is already under a dr for his eye's. ear's and heart and a dr to keep an

eye on him and all his other dr's (well that's the way it fells and I suppose

that' a good thing!)

I like to be informed of what could happen so I can prepare myself for it Tyrese

is my 1st child and it's all quite scary been a new mom let alone havin to take

his condition into account as well.

Again thank you for making me feel like I'm not the only one who's felt this way

Alisss Corti wrote:

Hi and I'm glad you found this group so soon. It will make a difference.

My son is 2.5 yrs and has coloboma of his retina which gives him a

field of vision

loss, like a big spot in the center of his eye. This only effects his left eye,

but that eye is

much smaller than the " normal " eye. It also travels in a little because it's not

a healthy eye.

He's far sighted and has worn glasses since he was 9mths. Yes, they can check

and an

Optomologist is someone your child should probably see.

I think it's most important right now for you to focus on the health related

stuff. I know

your mind is spinning with what the future holds for your son, but you can only

take in so

much at one time. I had a hard time with this myself, but I wish someone had

told me this.

The first year and a half was the hardest. Just trying to keep my

breathing.

Having said that, get him to an Audiologist as soon as he's well enough. I

waited because I

was just so medically focused and he didn't get his hearing aids until 18 mths.

I know a

little boy (not CHARGE) who got his aids at 8 weeks and he's had really no delay

in speech.

I think another thing you should be aware of is the swallowing and reflux

problems that so

often seem to go along with CHARGE. I wouldn't hesitate to ask questions about

this.

It's great that your doctor knows about CHARGE I've had to educate many doctors.

I would

still go see a Geneticist, ours had so much information that I hadn't found

anywhere else.

We had so much going on that first year or so I kept I binder with me to keep

everything

in. All the new vocabulary was overwhelming and we had to go to a different

appointment

everyday. I called that binder " my sanity " .

now signs and is starting to speak. He started walking at two years and

now

runs/wobbles/runs everywhere. He knows all his colors and counts to 10 and signs

his

abc's. Oh and he knows all the moves to all the Wiggles songs. He'll be 3 in

August.

You will make it through this with the help of these wonderful people in this

group.

I never post, just read, and know I feel I've given you a novel. I just felt so

alone in the

beginning and I never want anyone else to feel that way.

Good luck

I will pray for you as a pray for all those affected by CHARGE.

Alissa

mom to many including my ChARGEr

> hi i have a one month old son who i have just been told has charge.

> i'd never heard of this syndrome before and dispite much research am

> ffindin it difficult to fully understand what charge is.

> I know the dr's have come to this diagnosis beacuse of several birth

> defects my son has but am still struggling to understand the rest of

> the implications the syndrome can have.

> My son's symptons are a heart mumour (this is still under

> investigation), hearing loss (not yet sure of how much hearin he

> does/doesn't have, small genetals and an under developed eye which he

> is blind in.

> if there is anyone else out there that is older or has an older child

> with the last of my son's symptons i would like to hear from you to

> know how it effects them/your child.

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

CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

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

please contact marion@... or visit

the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca, or email

info@....

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information

will be available at www.chargesyndrome.org or by calling 1-.

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

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Hi ,

My son is 7 and has some of the issues your son has...smaller eye that doctors

felt would be blind however now we know he sees differently through it..high and

to the side...but his other eye compensates quite well,many thought he would be

profoundly deaf ...again he is not profoundly deaf in both ears...one ear is

moderate sloping to mild..so he using his good ear to hear..he is aided ..he was

give to testerone shots at 3 months for a month and his genitals are of " normal

size " ...he does have Tetrology of Fallot a severe heart defect...he was repaired

at 10 days old and has a loud murmer being followed by a

cardiologist...expecting another heart surgery in the near future....there are

many other issues that impact daily however it does not keep him down...he

is in the top 1/3 of his typical first garde class...he participates

fully...Physical education,art, music( is in a school play)...I can say

that it would seem that the only barriers our children have are the ones

others place them...

Hope this helps you

Ellen mom to 7

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Guest guest

Hi , congratulations on the birth of your son and welcome to the

group. On here, you can ask anything, nothing is too small or too silly

because chances are that a great number of people here have experienced the

same or similar.

I am sure you are still in a great state of shock about all that is being

thrown at you about your son's medical and other issues. was also

our first daughter so the newness of parenting and the medical stuff was a

lot to deal with all at the same time, plus you can always ask advise from

your family, neighbours, friends etc about what to do if at a loss as a new

parent but who the hell do you ask if you have a child with a condition most

people have never even heard of? The good news is it does get easier, you

do become familiar with the terms being used and it actually feels quite

normal parenting your child (it was such a shock when number 2 came along

and I realised that I had great skills at parenting a newborn through an

incubator and negotiating lots of wires etc, but what do you do with one

with no issues, no wires, home at less than 3 months old etc? I had more

visits from the health visitor for number 2 than for number one because I

was actually more nervous! This is one for another time though).

My daughter will be 5 in 3 weeks' time. She has colobomas (most

likely the eye condition you refer to) in both eyes. She is also blind in

one eye and that eye is much smaller. , however, makes really good

use of the vision she has in that one eye. She has quite a lot of

independence skills - eg she is an oral feeder and feeds herself, being

very clear about which pieces of food are what and in which order she will

eat them; she is very active in her self-care and largely dresses herself

with prompting; she currently loves books and identifying objects from

pictures; she loves trampolining, riding her tricycle, running, climbing etc

etc. All these are just a few examples of her use of the vision she has.

She is also profoundly deaf so we British Sign Language to communicate with

her (she understands way more than she signs). She also had a variety of

heart issues which were repaired by 7 months old.

Every child with CHARGE is very different from the next one. At your stage,

I know I was desperate to have positive images of where my daughter might be

going and we were very lucky to meet a mum at one of the hospitals when

was 2 months old who gave us such hope at a horribly critical time.

We then met a whole load of parents and children when she was 3 months old

(scary but great), which I guess is probably the closest to having this

group.

I will avoid giving you too much advise, but most important (or at least it

was to us - apart from just loving our daughter), if you don't understand

anything the doctors are telling you, ask them to explain more clearly to

you. 's paediatrician in the neonatal unit used to draw almost

" idiot guide " pictures to explain things to us and we really appreciated

this. The more you understand about what is happening, being proposed etc,

the more in control and involved you feel. As Bonnie suggested, get a copy

of the CHARGE manual and make use of it. It will fill the gaps left by the

verbal explanations and give you ideas for questions to ask when you next

see the specialists. If in doubt(or not as the case might be), always feel

free to ask questions here.

One last point before I forget. Easier said than done I know, but try not

to get too upset by people peering at your son because he looks different.

There is a great deal of ignorance out there and it mostly comes from

adults. Children have the innocence and grace to just ask. I remember when

had nasal stents after her choanal atresia repair and the looks she

and I used to get. If someone asks " what " or " why " at least you can tell

them. I am always more than happy to tell people the very abridged version

if they ask. The staring I find downright rude. I do try to ignore people

but on one occassion not that long ago, a woman stared at because of

her " CHARGE walk " so I just stared right back at her and she averted her

gaze before I did and at least had the good grace to look ashamed. Again,

the good news is that you do become more oblivious to it because you are

focused on your child.

I too look forward to hearing more about you and your son and your and his

progress. It is great that he is already linked with a number of

specialists. This alone can feel quite overwhelming but as I said, it does

get easier. Good luck with the journey.

Flo

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Guest guest

,

Congrats on your little boy. I have a little girl, 10 months old

with CHARGE. She is my 2nd child, and has a smaller left eye. She

has some vision in it, but we aren't sure how much. My advice to you

is to become a member of the CHARGE Syndrome Foundation, and to get

the parents manual which can be purchased by calling or faxing in

your order. The manual is intimidating, but it really educates you

on the things that could be, even though not all will effect your

son. The other thing that may be running through your mind is the

future for your son. I can tell you that looking through the

pictures of all the kids posted on this site has helped me

immensely. Whenever I get worried about Carmen's future, I just look

at all the older kids pics on this group site and it gives me hope

that she too will be a happy little girl, past all the " worst of it "

stuff. When Carmen was first born I really worried about how she

might be cognitively. I'm happy to say that she is a very happy,

social, and affectionate little girl who is a joy to my family

(especially her big brother). You will get through this, but it is

toughest in the beginning. Just educate yourself, use all the

support you can, and LOVE your baby. I was told to treat Carmen as

if she had no problem until she showed me otherwise. I try to give

her all the experiences my son had and I think she has done well as a

result. Don't shelter your son from others--let him enjoy all the

senses he can, and let others experience him!

God bless you and always feel free to contact me or anyone on this

site if you need someone. It is really a great family!!

, mom to Zach 3.5 and Carmen 10 months (CHARGE)

> > hi i have a one month old son who i have just been told has

charge.

> > i'd never heard of this syndrome before and dispite much research

am

> > ffindin it difficult to fully understand what charge is.

> > I know the dr's have come to this diagnosis beacuse of several

birth

> > defects my son has but am still struggling to understand the rest

of

> > the implications the syndrome can have.

> > My son's symptons are a heart mumour (this is still under

> > investigation), hearing loss (not yet sure of how much hearin he

> > does/doesn't have, small genetals and an under developed eye

which he

> > is blind in.

> > if there is anyone else out there that is older or has an older

child

> > with the last of my son's symptons i would like to hear from you

to

> > know how it effects them/your child.

>

>

>

>

>

> Membership of this email support groups does not constitute

membership in the CHARGE Syndrome Foundation or CHARGE Syndrome

Canada.

> For information about the CHARGE Syndrome

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

> please contact marion@c... or visit

> the web site at http://www.chargesyndrome.org. For CHARGE Syndrome

Canada information and membership, please visit

http://www.chargesyndrome.ca, or email info@c...

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at www.chargesyndrome.org or by calling

1-.

>

>

>

> ---------------------------------

>

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Guest guest

Hi

I have just read your posting (I am a little behind with my emails) and see

you have a UK email address. As others on the listserve know I am vice chair

of CHARGE Family Suppport Group here in the UK. We also have a website

www.widerworld.co.uk/charge and a forum (although not half as active as

here) which is run by parents of a boy with CHARGE. There is a quarterly

newsletter that I produce, would you like to receive this - the latest issue

is seriously late but will ready very soon.

You will have read my partner's (Flo) posting about our daughter .

Feel free to telephone us - 020 8265 3604 as we are the first point of

contact for the group. Where do you live in the UK because there are

families right across the UK?

Finally congratulations on the birth of your boy.

Simon

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Guest guest

yes I would be intrested in reciving the news letter as at the moment i'm

looking for all the information i can possiable gather.

we live in Birmingham right near the city center so have good accses to the

childrens hospital where we have been refered to for Tyrese's heart murmur I'm

told the Dr is very good but I won't know for myself till 2 weeks. I will take a

look at the web site you pointed me in the direction of.

Thank you

Simon wrote:

Hi

I have just read your posting (I am a little behind with my emails) and see

you have a UK email address. As others on the listserve know I am vice chair

of CHARGE Family Suppport Group here in the UK. We also have a website

www.widerworld.co.uk/charge and a forum (although not half as active as

here) which is run by parents of a boy with CHARGE. There is a quarterly

newsletter that I produce, would you like to receive this - the latest issue

is seriously late but will ready very soon.

You will have read my partner's (Flo) posting about our daughter .

Feel free to telephone us - 020 8265 3604 as we are the first point of

contact for the group. Where do you live in the UK because there are

families right across the UK?

Finally congratulations on the birth of your boy.

Simon

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

CHARGE Syndrome Foundation or CHARGE Syndrome Canada.

For information about the CHARGE Syndrome

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

please contact marion@... or visit

the web site at http://www.chargesyndrome.org. For CHARGE Syndrome Canada

information and membership, please visit http://www.chargesyndrome.ca, or email

info@....

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005. Information

will be available at www.chargesyndrome.org or by calling 1-.

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

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  • 7 months later...

Welcome Janet...........Happy New Year to You in Norway!! Please keep us posted

when you get a date for surgery. Hope you enjoy our group.

Take care Barb :)

janelimor wrote:

Hello Everyone and Happy New Year!

Figured this would be as good a time as any to introduce myself. My

name in Janet and I am living in Norway. Im orriginally from Canada

but have married a wonderful Norwegian man and we live here with our

two girls.

I am going to have my surgery here in Norway and they have lots of

suport options but unfortunalty they are mostly in norwegian. I

found your group and have been only taking part the last week in

reading what goes on here.

It is great I have already learned alot and find out interesting

things everyday. I haven't yet recieved a date for my surgery but I

should know within the next month. Before I came here to this group

I was a little usure but by just reading the posts good and bad I

have a better understanding and I am so much more ready.

So keep posting. I am always here but you might find I am in the

back ground. I will try to post more.

Here is to a new year with many promising new things and adventures.

Big Hugs

Janet

We are a very active support group.

If the email becomes overwhelming,

please change your setting to NO EMAIL!

Please contact Group Creator

Robyn@...

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WELCOME Janet!!!!!!!!!

Hugs!!

>

> Hello Everyone and Happy New Year!

>

> Figured this would be as good a time as any to introduce myself.

My

> name in Janet and I am living in Norway. Im orriginally from

Canada

> but have married a wonderful Norwegian man and we live here with

our

> two girls.

>

> I am going to have my surgery here in Norway and they have lots of

> suport options but unfortunalty they are mostly in norwegian. I

> found your group and have been only taking part the last week in

> reading what goes on here.

>

> It is great I have already learned alot and find out interesting

> things everyday. I haven't yet recieved a date for my surgery but

I

> should know within the next month. Before I came here to this

group

> I was a little usure but by just reading the posts good and bad I

> have a better understanding and I am so much more ready.

>

> So keep posting. I am always here but you might find I am in the

> back ground. I will try to post more.

>

> Here is to a new year with many promising new things and

adventures.

>

> Big Hugs

>

> Janet

>

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  • 2 weeks later...

i just got home yesterday also form having my surgery on monday

celeste

Newbie

I just had gastric bypass on monday 1/9 and just came home yesterday.

I wanted to say hi and let you know theres a newbie.

Shay

We are a very active support group.

If the email becomes overwhelming,

please change your setting to NO EMAIL!

Please contact Group Creator

Robyn@...

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Celeste,

I hope you are doing ok. You are in my thoughts and prayers.

Love,

Newbie

>

>

> I just had gastric bypass on monday 1/9 and just came home

> yesterday.

> I wanted to say hi and let you know theres a newbie.

> Shay

>

>

>

>

>

>

> We are a very active support group.

> If the email becomes overwhelming,

> please change your setting to NO EMAIL!

> Please contact Group Creator

> Robyn@...

>

>

>

>

>

>

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Hi Shay.....Welcome to the group & welcome to the losing side!!

Congratulations on your surgery! Nice way to start the New Year off by making a

healthier new life style for yourself...........Take care & keep us posted of

your progress. Barb :)

Shayna wrote: I just had gastric bypass on monday 1/9

and just came home yesterday.

I wanted to say hi and let you know theres a newbie.

Shay

We are a very active support group.

If the email becomes overwhelming,

please change your setting to NO EMAIL!

Please contact Group Creator

Robyn@...

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congrats on your surgery and welcome to the group

Ruth Ann

Shayna wrote:

I just had gastric bypass on monday 1/9 and just came home yesterday.

I wanted to say hi and let you know theres a newbie.

Shay

We are a very active support group.

If the email becomes overwhelming,

please change your setting to NO EMAIL!

Please contact Group Creator

Robyn@...

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  • 3 weeks later...

Hi Everyone,

I am relatively new to this group thing.. so it may take awhile for me

to get the hang of it.

I am in the process of getting qualified through insurance for the

gastric bypass surgery. Just waiting for an ok . I'm really excited

but also scared. Any suggestions on keeping myself calm?

Glad to have found this group :)

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,

There is no real trick to keeping calm. The best advice I could give

you is stay busy with your kids and come here to vent!! :) Hang in

there I know it is hard!! I was physically sick 2 weeks before my

surgery from the stress and excitement. I would throw up and I had the

runs...... yeah I know gross!!! :)

LOL WELCOME to the group!!!!!!! Come and vent, say hi or cry and time!!

HUGS!!

>

> Hi Everyone,

>

> I am relatively new to this group thing.. so it may take awhile for

me

> to get the hang of it.

>

> I am in the process of getting qualified through insurance for the

> gastric bypass surgery. Just waiting for an ok . I'm really excited

> but also scared. Any suggestions on keeping myself calm?

>

> Glad to have found this group :)

>

>

>

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Thank you Shauna - I really appreciate the support. I find myself

alternating between total elation and sheer terror. For some

reason, I am super emotional and cry at the smallest thing. I can't

wait to start losing this weight but I am also scared. Is that

crazy? I've never been thin in my life so I have a hard time

picturing myself..

> Hi Everyone,

>

> I am relatively new to this group thing.. so it may take awhile

for me

> to get the hang of it.

>

> I am in the process of getting qualified through insurance for the

> gastric bypass surgery. Just waiting for an ok . I'm really

excited

> but also scared. Any suggestions on keeping myself calm?

>

> Glad to have found this group :)

>

>

>

>

>

>

>

> We are a very active support group.

> If the email becomes overwhelming,

> please change your setting to NO EMAIL!

> Please contact Group Creator

> Robyn@G...

>

>

>

>

>

>

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