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Michele,

After Kendra's g-tube was removed, she was playing with her Madeline doll one

day. Although she had not shown much

interest in playing with dolls, her opinion seemed to change after the tube was

taken out. It happened that while

dressing the doll that Kendra really took a good look at the scar on Madeline's

stomach (from the appendix removal) and

then compared it to her own scar from the g-tube removal. She seems to have

gained a special feeling for Madeline

since then.

Mom to Kendra, 12, , 18 and Camille, 21

Portland, OR

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-

Is the band made of that foam-kind-of-material, wide around the back

with narrow tube-type ends? If so, we've got them at Walmart in several

colors. But the ends don't work with the wrap around part of the

glasses.

There is also a plastic cord that just keeps the glasses from falling to

the floor. It attaches with a loop so I can slide it up to the sides of

the glasses, but it's not tight enough to help.

No, Aubrie does not have aides yet. I really don't think she's gonna

need them (knock on wood). We'll see.

Michele

mom to Aubrie (18 mos) CHaRgE and (7 yrs), wife to DJ, in IL

westml@...

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In a message dated 6/18/99 1:30:54 PM US Eastern Standard Time,

gweir@... writes:

<< I know there's a place you can custom order a

dolly just like your child, {ie with glasses/hearing aids, scars, etc}, >>

If you find the place, please share it with me, as I would love to get one

for Tryny. It would help also in helping my grandbabies to understand their

" uncle " better too. Email me if you can locate such a place.

Thanks,

Debra

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,

That's such a cute story, I know there's a place you can custom order a

dolly just like your child, {ie with glasses/hearing aids, scars, etc}, I'm

thinking of getting one for Kennedy.

Mom to Kennedy 16 mos old CHARGEr, 9, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir's homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

>

>

>Michele,

>

>After Kendra's g-tube was removed, she was playing with her Madeline doll

one day. Although she had not shown much

>interest in playing with dolls, her opinion seemed to change after the tube

was taken out. It happened that while

>dressing the doll that Kendra really took a good look at the scar on

Madeline's stomach (from the appendix removal) and

>then compared it to her own scar from the g-tube removal. She seems to

have gained a special feeling for Madeline

>since then.

>

>

>Mom to Kendra, 12, , 18 and Camille, 21

>Portland, OR

>

>

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

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>4th International CHARGE Syndrome Conference, Houston, Texas, July

>23-25, 1999.

>For information about the CHARGE Syndrome Foundation or to become a member

please contact marion@....

>

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Michele,

It's not foam, it's just elastic with plastic thingys on the end that attach

to the glasses.

It's ugly but functional. :) BTW, what was the name of that Beanie Baby

again? Maple Bear?

Mom to Kennedy 16 mos old CHARGEr, 9, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir's homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

>

>

>-

>Is the band made of that foam-kind-of-material, wide around the back

>with narrow tube-type ends? If so, we've got them at Walmart in several

>colors. But the ends don't work with the wrap around part of the

>glasses.

>

>There is also a plastic cord that just keeps the glasses from falling to

>the floor. It attaches with a loop so I can slide it up to the sides of

>the glasses, but it's not tight enough to help.

>

>No, Aubrie does not have aides yet. I really don't think she's gonna

>need them (knock on wood). We'll see.

>

>Michele

>mom to Aubrie (18 mos) CHaRgE and (7 yrs), wife to DJ, in IL

>westml@...

>

>

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

>Who is the most visited e-mail list community Web Service?

>http://www.onelist.com

>ONElist.com - where more than 20 million e-mails are exchanged each day!

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

>4th International CHARGE Syndrome Conference, Houston, Texas, July

>23-25, 1999.

>For information about the CHARGE Syndrome Foundation or to become a member

please contact marion@....

>

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Graeme & Weir wrote:

> I know there's a place you can custom order a

> dolly just like your child, {ie with glasses/hearing aids, scars, etc}

-

Please let us know the details on those dolls when you find out. Aubrie will

have to have one too.

Michele

mom to Aubrie (18 mos) CHaRgE and (7 yrs), wife to DJ, in IL

westml@...

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Michele,

Actually Jeanie Colp told me about them, they were in her O/T's catalog if I

remember correctly, I'll ask her next time I'm talking to her! Sorry about

spelling Aubrie's name wrong in a couple of messages, with the new

Aubrie's/Aubrey's on the list I'm getting confused!!!! :)

Mom to Kennedy 16 mos old CHARGEr, 9, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir's homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

>

>

>

>

>Graeme & Weir wrote:

>

>> I know there's a place you can custom order a

>> dolly just like your child, {ie with glasses/hearing aids, scars, etc}

>

>-

> Please let us know the details on those dolls when you find out. Aubrie

will have to have one too.

>

>Michele

>mom to Aubrie (18 mos) CHaRgE and (7 yrs), wife to DJ, in IL

>westml@...

>

>

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

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

>4th International CHARGE Syndrome Conference, Houston, Texas, July

>23-25, 1999.

>For information about the CHARGE Syndrome Foundation or to become a member

please contact marion@....

>

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DW33333333@... wrote:

>

> From: DW33333333@...

>

> In a message dated 6/18/99 1:30:54 PM US Eastern Standard Time,

> gweir@... writes:

>

> << I know there's a place you can custom order a

> dolly just like your child, {ie with glasses/hearing aids, scars, etc}, >>

>

> If you find the place, please share it with me, as I would love to get one

> for Tryny. It would help also in helping my grandbabies to understand their

> " uncle " better too. Email me if you can locate such a place.

>

> Thanks,

>

> Debra

>

I've seen a catalogue fillid with this type of stuff. I'll get the

address. Also, Debra, Cochlear Corporation just sent me a whole box of

kid stuff including an exact replica of an implant for a doll. I thought

it was brilliant! You may want to contact them.

Jeanie Colp

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Debra,

I will, I think I heard that they were about $50 Canadian if I remember

correctly, so they'd be even cheaper for you guys!

Mom to Kennedy 16 mos old CHARGEr, 9, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir's homepage " at:

http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

>From: DW33333333@...

>

>In a message dated 6/18/99 1:30:54 PM US Eastern Standard Time,

>gweir@... writes:

>

><< I know there's a place you can custom order a

> dolly just like your child, {ie with glasses/hearing aids, scars, etc}, >>

>

>If you find the place, please share it with me, as I would love to get one

>for Tryny. It would help also in helping my grandbabies to understand

their

> " uncle " better too. Email me if you can locate such a place.

>

>Thanks,

>

>Debra

>

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

>What do lizards and rock music have in common?

>http://www.onelist.com

>They both have communities at ONElist. Find yours today!

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

>4th International CHARGE Syndrome Conference, Houston, Texas, July

>23-25, 1999.

>For information about the CHARGE Syndrome Foundation or to become a member

please contact marion@....

>

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