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Yes, yes, and yes.

You are doing the right thing..research repositioning and finding a ped who will help you. You are lucky to notice it so early. Will your insurance let you see a neuro without a referral? If so- go to the cranial tech web site and see if there is a neuro listed there close to you that you could consult. where do you live?

my son turns 3 months tomorrow and has back right flatness and front bossing. feel free to email me personally at bbbhand@...

beck

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I'm sure every mother feels this way when her concerns are dismissed!

After all, We are going on our instincts!! I would jump on

http://www.plagiocephaly.org to see if you can find a Doctor who will

diagnose Plagiocephaly. It's worth a try!! I know how frustrating

this must be for you! The good news is your son is 3 months!! Also

check out the Cranial Tech site for a listing of Specialist.

http://www.cranialtech.com

Keep up updated!

Sierra 07/99

11/97

Redford, MI

> Hi! I'm new to all this, as my son is only 3 months old today. At

> his two month visit, I was told his head was flat and if it didn't

> fix itself, he would need a helmet. My pediatrician offered no

other

> solutions or options on repositioning or anything. I felt like he

> was saying my son was a freak. I have done all the research on my

> own to even find out out about this problem. My family is really

no

> help either because they say " he's fine, " but I know he's not. I

get

> so upset about this and I don't know if I'm over reacting or what.

I

> am seeing a new pediatrician next month for his four month check up

> because of the attitude of the other doctor. I just don't know

what

> to do. I tried repositioning him on my own, but it hasn't seem to

> help. I am just so upset. I don't want him to be different and to

> have people stare at him because he is wearing a helmet. Is that

> horrible for me to say? I just want to cry. Has anyone else ever

> felt like this?

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Hello and welcome! I'm glad you found this group. In answer to your

questions, " Has anyone else felt like this " I can tell you YES!!!!! Probably

almost all of us. Your baby is very young and if he does need helmet or band

treatment you will be starting at the perfect age! My family also tried to

comfort me and tell me there was nothing wrong, but I knew in my heart of

hearts that they were wrong. Our ped did NOT point out the flatness. We

pointed it out to him at 4 month check and he said not to worry it would

round out on its own. At the 7 month check it was not any better and we

convinced him to send us to a pediatric neurosurgeon. The specialist

diagnosed her immediately and we began the process of getting the helmet. I

was so very relieved that someone finally believed me that the flatness was

not right that I was actually looking forward to getting the helmet and

starting on the road to recovery. Plagio is now my crusade - I want to spread

the word as much as possible so when people comment on her helmet I use it as

a chance to educate! I'm not saying I don't miss her little head or get

bugged when people stare - it does bother me sometimes and believe me it

doesn't make you a bad person - it makes you human! I would suggest really

pressing your new ped to give you a referral to a specialist ASAP so you can

get him checked for torticollis and to make sure the sutures in his head are

still open. You have come to the right place for support and answers. This

group is AWESOME!!!

Please keep us posted!

Marci (Mom to )

Oklahoma

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http://www.plagiocephaly.org/support/repositioning_techniques.htm

here is a link with some repositioning ideas.

No, you are not alone by not wanting to see your sweet little baby in a helmet. I think we all felt that way at one point! For me, I did everything I could to reposition Hanna to avoid a helmet, but after 4 1/2 months, we got one (she was 5 1/2 months at her casting, and 6 months when she got her band). We had to wait this long to see a specialist anyway, otherwise I may have done it earlier. All I know is that I tried VERY hard to fix her on our own, with no success. There have been others who have had success with repositioning, so give it a try!

Make sure you take photos of your son's head (front, sides, back, and especially from the top) today, so you can compare in a few weeks time to see if there has been any improvement.

Welcome to the group, and keep us up to date with how things are going!

Kendra in CanadaFor more plagio info, visitwww.plagiocephaly.org/support...

----- Original Message -----

From: edh909@...

Plagiocephaly

Sent: Wednesday, March 07, 2001 12:52 PM

Subject: Help!

Hi! I'm new to all this, as my son is only 3 months old today. At his two month visit, I was told his head was flat and if it didn't fix itself, he would need a helmet. My pediatrician offered no other solutions or options on repositioning or anything. I felt like he was saying my son was a freak. I have done all the research on my own to even find out out about this problem. My family is really no help either because they say "he's fine," but I know he's not. I get so upset about this and I don't know if I'm over reacting or what. I am seeing a new pediatrician next month for his four month check up because of the attitude of the other doctor. I just don't know what to do. I tried repositioning him on my own, but it hasn't seem to help. I am just so upset. I don't want him to be different and to have people stare at him because he is wearing a helmet. Is that horrible for me to say? I just want to cry. Has anyone else ever felt like this?

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ABSOLUTELY FELT LIKE THAT!!!!

we had a really rough start with feeling lousy about the stares and

people making us feel like we had big problems. but i can tell u for

sure you do get to a point where u just dont care any more. i posted

awhile ago (a lot) about some horrible experiences and i got over it

fast when i remembered it was for his good.

i am not going to stand on a pedestool and " preach " because when other

people said it gets easier to me, i still felt quite lousy. but with

time u will see it truely doesnt end up effecting u. AND>>>at 3/4

months old, u may only need it for a month or so. u r getting it at

the perfect time.

go with ur gut instinct and dont listen to people that make ya feel

crazy. i mistakenly waited until my son was 8.5 months when i started

noticing at 3/4 months. but like u-people said as a first time mom i

was over reacting. i wish u the best of luck and trust urself!!!

lisa

> Hi! I'm new to all this, as my son is only 3 months old today. At

> his two month visit, I was told his head was flat and if it didn't

> fix itself, he would need a helmet. My pediatrician offered no

other

> solutions or options on repositioning or anything. I felt like he

> was saying my son was a freak. I have done all the research on my

> own to even find out out about this problem. My family is really no

> help either because they say " he's fine, " but I know he's not. I

get

> so upset about this and I don't know if I'm over reacting or what.

I

> am seeing a new pediatrician next month for his four month check up

> because of the attitude of the other doctor. I just don't know what

> to do. I tried repositioning him on my own, but it hasn't seem to

> help. I am just so upset. I don't want him to be different and to

> have people stare at him because he is wearing a helmet. Is that

> horrible for me to say? I just want to cry. Has anyone else ever

> felt like this?

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Hi,

We tried repositioning, but too late for us. ( was 7 months old.) It may

work for you since your baby is younger. Try not to wait too long before

getting a second opinion (like we did). is now in a DOC Band (she is

now 13 months old) and doing well in it. I was VERY scared of stares, but I

will tell you, I think she gets more attention! People are always coming up

and telling me that she has pretty eyes. Some people ask why she is wearing

a " helmet " , and I just explain it to them.

Good luck to you and welcome to the group!

-- & --

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  • 4 weeks later...
Guest guest

Amy - I am so sorry! I would love to hear the response from the doctor that read the CT results the first time around! A mouse in the corner to hear all these discussions would be my dream! You can still check around for more doctors to read the CT Scan. It really scares me when one says everything is ok and other says surgery!

So, the eye then could be related to the coronal suture being fused? Surgery then might correct that eye shape?

Hang in there and take a nice warm bath/shower and try and get some sleep!

Take care and you are in my prayers.

Tammy & 12/8/99

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Im not surprised you feel so dreadful, Amy. This is upsetting news,

but it doesnt mean you are a failure in any sense of hte word. The

fact that you were there consulting these doctors shows that you have

been down every avenue trying to find help for Max. There is no

failure in that, but rather a fantastic Mommy who wants to best for

her child. One day, Max will know that and tell you that himself.

My daughter had heart surgery when she was just five days old, and if

there is one thing that taught us it is how resilient babies are.

They appear so fragile, but in fact they are little troopers, and can

cope with what life throws at them admirably. With a loving family

behind them, they are even more able to leap the hurdles life puts in

their way. Im sure Max will be no different.

Hang in there.

Best wishes,

Kimberley

> I want to start by saying that my life completely sux! I went to

the

> Neurosurgeon today for a follow up for Max(brought the CT Scans for

the first

> time) anyway, the doctor immediately sent me to a CranioFacial

Reconstructive

> Surgeon to check Max and the scans and he thinks that part of Max's

coronal

> suture is fused and that Max should have CVR surgery asap! I am

just crying

> my eyes out! I can't believe that this is happening! I went to 2

doctors

> today, a neuro and a reconstructive surgeon and both had the same

opinion! I

> emailed Jen from CAPS and am waiting to hear from her. The

Starband is

> officially off! I just want to cry for the rest of the night! I

don't want

> to have this surgery but both doctors think that it is necessary! I

left my

> house for an 11:30 appt this morning and just got home at 7:00pm.

> It has been a long day. I will post later when I have a clear

head. I will

> be happy to answer any questions. I feel like such a failure! I

wish I went

> to this doctor months ago! I can't believe this is happening to us!

>

> I am sorry to go on.

> Amy (Max's mom)

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Amy:

I feel horrible for you and your family right now. But NEVER think

of yourself as a failure - hindsight is 20/20, remember that. You

have now found out & have consulted with several other Drs to verify

this. It's a lot to take in all of a sudden, I can only imagine.

Try to remain as positive as possible in this situation. Good luck.

Debbie Abby's mom

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Amy

In no way should you blame yourself for this. If that is the case

then we should all be pointing the fingers at ourselves saying how

could we let our children's heads get flat.

I know that this must be such a difficult time for you and please

know that my thoughts and prayers are with you and your family.

I wish there were magic wands that we could purchase to make all of

our families sufferings just go away, but there isn't so that's what

friends and family are for...the support you need right now going

through this.

I know the shock of having such horrible news bestowed upon you when

you think life is going along just fine...my father is on the heart

transplant list and I remember the day vividly when the doctor came

and told us that he wasn't doing so good and that he would need to

wait for a new heart.

I know you have to be asking God why is he doing this to such an

innocent human being and why is he doing this to you and your

family...I don't know the answer to that, but what I can offer you as

I am sure the group as a whole will offer to you and others in your

situation is as much prayer and support as you need.

God Bless you

Stasia

> I want to start by saying that my life completely sux! I went to

the

> Neurosurgeon today for a follow up for Max(brought the CT Scans for

the first

> time) anyway, the doctor immediately sent me to a CranioFacial

Reconstructive

> Surgeon to check Max and the scans and he thinks that part of Max's

coronal

> suture is fused and that Max should have CVR surgery asap! I am

just crying

> my eyes out! I can't believe that this is happening! I went to 2

doctors

> today, a neuro and a reconstructive surgeon and both had the same

opinion! I

> emailed Jen from CAPS and am waiting to hear from her. The

Starband is

> officially off! I just want to cry for the rest of the night! I

don't want

> to have this surgery but both doctors think that it is necessary! I

left my

> house for an 11:30 appt this morning and just got home at 7:00pm.

> It has been a long day. I will post later when I have a clear

head. I will

> be happy to answer any questions. I feel like such a failure! I

wish I went

> to this doctor months ago! I can't believe this is happening to us!

>

> I am sorry to go on.

> Amy (Max's mom)

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Amy,

Just a quick note to say (like everyone else!)this is NOT your

fault! I can only imagine how you feel though...sorry!!! Hang in

there, and remember we are all here for you!! Lots of friends and

prayers or whatever you need!! Take care and keep us posted!!

- Evan's mom

> I want to start by saying that my life completely sux! I went to

the

> Neurosurgeon today for a follow up for Max(brought the CT Scans for

the first

> time) anyway, the doctor immediately sent me to a CranioFacial

Reconstructive

> Surgeon to check Max and the scans and he thinks that part of Max's

coronal

> suture is fused and that Max should have CVR surgery asap! I am

just crying

> my eyes out! I can't believe that this is happening! I went to 2

doctors

> today, a neuro and a reconstructive surgeon and both had the same

opinion! I

> emailed Jen from CAPS and am waiting to hear from her. The

Starband is

> officially off! I just want to cry for the rest of the night! I

don't want

> to have this surgery but both doctors think that it is necessary! I

left my

> house for an 11:30 appt this morning and just got home at 7:00pm.

> It has been a long day. I will post later when I have a clear

head. I will

> be happy to answer any questions. I feel like such a failure! I

wish I went

> to this doctor months ago! I can't believe this is happening to us!

>

> I am sorry to go on.

> Amy (Max's mom)

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Guest guest

Oh Amy - I am so SORRY! Max and your whole family are in our

thoughts and prayers. Please know that we are all here to support

you during these tough times. I hope it helps that you have our

love and Moms like & can provide excellent support

having gone down similar paths...

Sending GREAT BIG {{{{{HUGS}}}}}

e

4/00 (1st helmet 12/00-3/01, still waiting for the 2nd)

Gaylord, Michigan

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Oops... Amy, I forgot to mention that this is in NO WAY your fault.

The whole guilt-thing that we all seem to go through is just awful.

The only comforting thing about it is that when another GREAT parent

says that they feeling guilty in this group and we immediately say

that they shouldn't be, it allows us to reflect on our very own

feelings of guilt.

Sweetie, you're AWESOME and Max LOVES you for it!

e (again) :)

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>Amy,

It sounds like you had a long and stressful day. Just hang in

there. You are trying to do what's best for Max, and by no means

have you failed. Stay strong and have faith. Just look at your

cutie's eyes for strength. I wish you the best.

&

I want to start by saying that my life completely sux! I went to the

> Neurosurgeon today for a follow up for Max(brought the CT Scans for

the first

> time) anyway, the doctor immediately sent me to a CranioFacial

Reconstructive

> Surgeon to check Max and the scans and he thinks that part of Max's

coronal

> suture is fused and that Max should have CVR surgery asap! I am

just crying

> my eyes out! I can't believe that this is happening! I went to 2

doctors

> today, a neuro and a reconstructive surgeon and both had the same

opinion! I

> emailed Jen from CAPS and am waiting to hear from her. The

Starband is

> officially off! I just want to cry for the rest of the night! I

don't want

> to have this surgery but both doctors think that it is necessary! I

left my

> house for an 11:30 appt this morning and just got home at 7:00pm.

> It has been a long day. I will post later when I have a clear

head. I will

> be happy to answer any questions. I feel like such a failure! I

wish I went

> to this doctor months ago! I can't believe this is happening to us!

>

> I am sorry to go on.

> Amy (Max's mom)

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Amy,

I am so sorry to hear about everything that you and your family are

going through. Please don't ever blame yourself that is like saying

you could have prevented it but didn't and we all know that isn't the

case. I don't want to sound like a broken record but I did want you

to know that you and your family are in our thoughts and prayers.

Hang tight you & yours will come thru this too. Please keep us

posted on everything.

Love and Huggs,

April Mommy to Bri and Mandy

> I want to start by saying that my life completely sux! I went to the

> Neurosurgeon today for a follow up for Max(brought the CT Scans for

the first

> time) anyway, the doctor immediately sent me to a CranioFacial

Reconstructive

> Surgeon to check Max and the scans and he thinks that part of Max's

coronal

> suture is fused and that Max should have CVR surgery asap! I am

just crying

> my eyes out! I can't believe that this is happening! I went to 2

doctors

> today, a neuro and a reconstructive surgeon and both had the same

opinion! I

> emailed Jen from CAPS and am waiting to hear from her. The Starband

is

> officially off! I just want to cry for the rest of the night! I

don't want

> to have this surgery but both doctors think that it is necessary! I

left my

> house for an 11:30 appt this morning and just got home at 7:00pm.

> It has been a long day. I will post later when I have a clear head.

I will

> be happy to answer any questions. I feel like such a failure! I

wish I went

> to this doctor months ago! I can't believe this is happening to us!

>

> I am sorry to go on.

> Amy (Max's mom)

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Guest guest

Oh Amy!!!! (((((((hug hug hug)))))))

Why is this just coming about now? How frustrating and horrible for you :o(

I wish I knew what to say.

Kendra in CanadaFor more plagio info, go towww.plagiocephaly.org/support

----- Original Message -----

From: syddesi2@...

plagiocephaly

Sent: Wednesday, April 04, 2001 4:30 PM

Subject: HELP!

I want to start by saying that my life completely sux! I went to the Neurosurgeon today for a follow up for Max(brought the CT Scans for the first time) anyway, the doctor immediately sent me to a CranioFacial Reconstructive Surgeon to check Max and the scans and he thinks that part of Max's coronal suture is fused and that Max should have CVR surgery asap! I am just crying my eyes out! I can't believe that this is happening! I went to 2 doctors today, a neuro and a reconstructive surgeon and both had the same opinion! I emailed Jen from CAPS and am waiting to hear from her. The Starband is officially off! I just want to cry for the rest of the night! I don't want to have this surgery but both doctors think that it is necessary! I left my house for an 11:30 appt this morning and just got home at 7:00pm.It has been a long day. I will post later when I have a clear head. I will be happy to answer any questions. I feel like such a failure! I wish I went to this doctor months ago! I can't believe this is happening to us!I am sorry to go on.Amy (Max's mom)

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Amy,

I couldn't believe what you were saying in your post!!! Amy, I am so, so

sorry!!! There is no doubt however that you will get through this - you are a

strong person and so is Max. will surely contact you and she will be

able to help you through each step.

Amy, I really hope you will stick with us. You know this group will be

praying for you and prayer can make all the difference. You are at the top of

my list!!

PLEASE keep us posted!!!

Marci

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Guest guest

Amy,

I am so sorry to hear about the possibility that Max has a condition

that someone (not you!) should have recognized earlier. Please don't

blame yourself--you're the one who spent hours searching for just the

right eye doctor for Max, the one who demanded that he receive

treatment that would show results. You have done--and are continuing

to do--everything right. You're a great mom, and great moms, as we

all know, sometimes have to make up for not-so-great doctors. And

they do!

You and Max are in my thoughts and prayers.

, Conor's mom

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Guest guest

Amy,

Your NOT a failure. How were you to know? You

don't have x-ray vision.

Medically speaking they can do some remarkable

things! Things will be fine, you will always have us

to lean on. If there is anymore I can do, please

don't hesitate!

Hugs & kisses to Max!!

Jill (Mom to Josh & Jarred, Accord,NY)

--- syddesi2@... wrote:

> I want to start by saying that my life completely

> sux! I went to the

> Neurosurgeon today for a follow up for Max(brought

> the CT Scans for the first

> time) anyway, the doctor immediately sent me to a

> CranioFacial Reconstructive

> Surgeon to check Max and the scans and he thinks

> that part of Max's coronal

> suture is fused and that Max should have CVR surgery

> asap! I am just crying

> my eyes out! I can't believe that this is happening!

> I went to 2 doctors

> today, a neuro and a reconstructive surgeon and both

> had the same opinion! I

> emailed Jen from CAPS and am waiting to hear from

> her. The Starband is

> officially off! I just want to cry for the rest of

> the night! I don't want

> to have this surgery but both doctors think that it

> is necessary! I left my

> house for an 11:30 appt this morning and just got

> home at 7:00pm.

> It has been a long day. I will post later when I

> have a clear head. I will

> be happy to answer any questions. I feel like such

> a failure! I wish I went

> to this doctor months ago! I can't believe this is

> happening to us!

>

> I am sorry to go on.

> Amy (Max's mom)

>

__________________________________________________

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Guest guest

Amy;

I am so sorry to hear the news. I know it has to be unbearable.

Please know that I am thinking of you, Max and your family and

praying that everything goes well. Keep us informed.

Hang in there.

Stacey

> I want to start by saying that my life completely sux! I went to

the

> Neurosurgeon today for a follow up for Max(brought the CT Scans for

the first

> time) anyway, the doctor immediately sent me to a CranioFacial

Reconstructive

> Surgeon to check Max and the scans and he thinks that part of Max's

coronal

> suture is fused and that Max should have CVR surgery asap! I am

just crying

> my eyes out! I can't believe that this is happening! I went to 2

doctors

> today, a neuro and a reconstructive surgeon and both had the same

opinion! I

> emailed Jen from CAPS and am waiting to hear from her. The

Starband is

> officially off! I just want to cry for the rest of the night! I

don't want

> to have this surgery but both doctors think that it is necessary! I

left my

> house for an 11:30 appt this morning and just got home at 7:00pm.

> It has been a long day. I will post later when I have a clear

head. I will

> be happy to answer any questions. I feel like such a failure! I

wish I went

> to this doctor months ago! I can't believe this is happening to us!

>

> I am sorry to go on.

> Amy (Max's mom)

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  • 2 weeks later...
Guest guest

Amy -

You are not a failure. We are in the same boat so I fully understand. We

can't get in for another CT until May - and then the dr said we might have

surgery. Not only is 's Metopic suture part closed, but now she is

worried that the sagital is too. Surgery is the last thing we want for our

children but if that is what is best for them - then I will race to the

front of the line. I have spent some time on the cranio site and it is so

helpful. Almost every post I've read has said that at 8 hours after

surgery, their children act like themselves and are smiling and laughing.

That sight will help you a lot. Especially with what to expect. You and

your little man are in my prayers.

Kim, NC

-----Original Message-----

From: syddesi2@... [mailto:syddesi2@...]

Sent: Wednesday, April 04, 2001 7:30 PM

plagiocephaly

Subject: HELP!

I want to start by saying that my life completely sux! I went to the

Neurosurgeon today for a follow up for Max(brought the CT Scans for the

first

time) anyway, the doctor immediately sent me to a CranioFacial

Reconstructive

Surgeon to check Max and the scans and he thinks that part of Max's coronal

suture is fused and that Max should have CVR surgery asap! I am just crying

my eyes out! I can't believe that this is happening! I went to 2 doctors

today, a neuro and a reconstructive surgeon and both had the same opinion!

I

emailed Jen from CAPS and am waiting to hear from her. The Starband is

officially off! I just want to cry for the rest of the night! I don't want

to have this surgery but both doctors think that it is necessary! I left my

house for an 11:30 appt this morning and just got home at 7:00pm.

It has been a long day. I will post later when I have a clear head. I will

be happy to answer any questions. I feel like such a failure! I wish I

went

to this doctor months ago! I can't believe this is happening to us!

I am sorry to go on.

Amy (Max's mom)

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  • 1 year later...

e,

You can go to the website where your photos are, pick the one that you want to copy, then right click--you will see an option that says "Save Picture As". click on this, and then choose the location where you want to save the picture. (A file on your computer--name it what you want and remember the location where you have saved it.) You can do this with any picutre on the net practically. To send your picture in a letter, you just add the file attachment, which I am sure you know how to do.

Patty

----- Original Message -----

From: JUSTINE RENE'

Sent: Wednesday, October 16, 2002 1:11 PM

Subject: Help!

Does anyone know if you can forward the pics in the photo section to someone? I've met some men online, and I want to send them some pics, and if I can forward the ones in the photo section, that would be ideal. However, I don't want them to know about the group, and I don't want to be explaining myself (and my scars and surgeries) just yet. I actually tried forwarding them to myself just to see, but when I opened the file, it came up and said "document not found. Please visit the main page."

If anyone can help, or forward the pics for me, let me know and I will provide you with the addresses.

Thanks,

e

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Hi e,

I don't know 'how to forward your pics'; however, if you want to try forwarding them to me on a "Test Only" basis, I will be happy to let you know what I receive from you, and nothing will go any further!

Blessings,

MM

Martha Murdock, DirectorNational Silicone Implant Foundation | Dallas Headquarters"Supporting Survivors of Medical Implant Devices"4416 Willow LaneDallas, TX 75244-7537

----- Original Message -----

From: JUSTINE RENE'

Sent: Wednesday, October 16, 2002 3:11 PM

Subject: Help!

Does anyone know if you can forward the pics in the photo section to someone? I've met some men online, and I want to send them some pics, and if I can forward the ones in the photo section, that would be ideal. However, I don't want them to know about the group, and I don't want to be explaining myself (and my scars and surgeries) just yet. I actually tried forwarding them to myself just to see, but when I opened the file, it came up and said "document not found. Please visit the main page."

If anyone can help, or forward the pics for me, let me know and I will provide you with the addresses.

Thanks,

e

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yes you can, you just go to the photo and hit save as, then you can save it where you want and resend it, remember though for anyone reading this not to copy others photos without permission!

C

----- Original Message -----

From: JUSTINE RENE'

Sent: Wednesday, October 16, 2002 2:11 PM

Subject: Help!

Does anyone know if you can forward the pics in the photo section to someone? I've met some men online, and I want to send them some pics, and if I can forward the ones in the photo section, that would be ideal. However, I don't want them to know about the group, and I don't want to be explaining myself (and my scars and surgeries) just yet. I actually tried forwarding them to myself just to see, but when I opened the file, it came up and said "document not found. Please visit the main page."

If anyone can help, or forward the pics for me, let me know and I will provide you with the addresses.

Thanks,

e

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