Re: Aubrie's ears and mouth

[Guest guest]

Michele,

So pleased it went well

Hugs

Elaine, mum to Elise (11yrs) & Jack (6yrs) CHaRGE

Scotland

[Guest guest]

Michele,

So pleased it went well

Hugs

Elaine, mum to Elise (11yrs) & Jack (6yrs) CHaRGE

Scotland

[Guest guest]

How exciting. Good to have that surgery over with at least and sounds like

good results on both.

Kim

> Hi!

> I'm having computer problems so I've been keeping up with reading and some

> replies but haven't posted about Aubrie's ear and palate surgery. She did

> so well! Her ears are amazing! They are still purple, swollen, and have

> stitches -- but you can see how wonderful they will be when they finish

> healing! She looks older without her little floppy ears.

>

> Her palate is also healing. I haven't been able to talk to her ST yet to

> get her reaction to her speech. I think it will take some time for the site

> to heal and then for the muscles to learn to work in their new position.

> However, I do think I'm hearing improvement as the days go on. It's so hard

> to tell with gradual changes. I taped her prior to surgery so I can tape

> her again and compare but I haven't had time yet.

>

> One thing of interest is that she says she can't blow her nose. Luckily,

> she hasn't had much need to, but she gets frustrated when she can't. I

> think it's a matter of relearning how to manage the air back there now.

>

> It was a crazy 2 weeks going for sudden surgery, coming home for 3 days,

> down to Shriners in St Louis, then on up to Chicago again for post-op. But

> we're getting back to normal now.

>

> The best thing to her is that she can eat anything she wants now. A liquid

> diet for a week was awful for her.

>

> I'll be back in touch again when it's more convenient on my regular

> computer. Best wishes to everyone!

>

> Michele W

> Aubrie's mom

>

>

>

> 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

> 7th International

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

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

How exciting. Good to have that surgery over with at least and sounds like

good results on both.

Kim

> Hi!

> I'm having computer problems so I've been keeping up with reading and some

> replies but haven't posted about Aubrie's ear and palate surgery. She did

> so well! Her ears are amazing! They are still purple, swollen, and have

> stitches -- but you can see how wonderful they will be when they finish

> healing! She looks older without her little floppy ears.

>

> Her palate is also healing. I haven't been able to talk to her ST yet to

> get her reaction to her speech. I think it will take some time for the site

> to heal and then for the muscles to learn to work in their new position.

> However, I do think I'm hearing improvement as the days go on. It's so hard

> to tell with gradual changes. I taped her prior to surgery so I can tape

> her again and compare but I haven't had time yet.

>

> One thing of interest is that she says she can't blow her nose. Luckily,

> she hasn't had much need to, but she gets frustrated when she can't. I

> think it's a matter of relearning how to manage the air back there now.

>

> It was a crazy 2 weeks going for sudden surgery, coming home for 3 days,

> down to Shriners in St Louis, then on up to Chicago again for post-op. But

> we're getting back to normal now.

>

> The best thing to her is that she can eat anything she wants now. A liquid

> diet for a week was awful for her.

>

> I'll be back in touch again when it's more convenient on my regular

> computer. Best wishes to everyone!

>

> Michele W

> Aubrie's mom

>

>

>

> 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

> 7th International

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

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

How exciting. Good to have that surgery over with at least and sounds like

good results on both.

Kim

> Hi!

> I'm having computer problems so I've been keeping up with reading and some

> replies but haven't posted about Aubrie's ear and palate surgery. She did

> so well! Her ears are amazing! They are still purple, swollen, and have

> stitches -- but you can see how wonderful they will be when they finish

> healing! She looks older without her little floppy ears.

>

> Her palate is also healing. I haven't been able to talk to her ST yet to

> get her reaction to her speech. I think it will take some time for the site

> to heal and then for the muscles to learn to work in their new position.

> However, I do think I'm hearing improvement as the days go on. It's so hard

> to tell with gradual changes. I taped her prior to surgery so I can tape

> her again and compare but I haven't had time yet.

>

> One thing of interest is that she says she can't blow her nose. Luckily,

> she hasn't had much need to, but she gets frustrated when she can't. I

> think it's a matter of relearning how to manage the air back there now.

>

> It was a crazy 2 weeks going for sudden surgery, coming home for 3 days,

> down to Shriners in St Louis, then on up to Chicago again for post-op. But

> we're getting back to normal now.

>

> The best thing to her is that she can eat anything she wants now. A liquid

> diet for a week was awful for her.

>

> I'll be back in touch again when it's more convenient on my regular

> computer. Best wishes to everyone!

>

> Michele W

> Aubrie's mom

>

>

>

> 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

> 7th International

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

> Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

> contact CHARGE Syndrome Canada at 1- (families), visit

> www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Michele,

Wonderful news!!!

pam

> ----------

> From: Michele Westmaas

> Reply To: CHARGE

> Sent: Thursday, May 6, 2004 12:13 AM

> To: CHARGE

> Subject: Aubrie's ears and mouth

>

> Hi!

> I'm having computer problems so I've been keeping up with reading and some

> replies but haven't posted about Aubrie's ear and palate surgery. She did

> so well! Her ears are amazing! They are still purple, swollen, and have

> stitches -- but you can see how wonderful they will be when they finish

> healing! She looks older without her little floppy ears.

>

> Her palate is also healing. I haven't been able to talk to her ST yet to

> get her reaction to her speech. I think it will take some time for the site

> to heal and then for the muscles to learn to work in their new position.

> However, I do think I'm hearing improvement as the days go on. It's so hard

> to tell with gradual changes. I taped her prior to surgery so I can tape

> her again and compare but I haven't had time yet.

>

> One thing of interest is that she says she can't blow her nose. Luckily,

> she hasn't had much need to, but she gets frustrated when she can't. I

> think it's a matter of relearning how to manage the air back there now.

>

> It was a crazy 2 weeks going for sudden surgery, coming home for 3 days,

> down to Shriners in St Louis, then on up to Chicago again for post-op. But

> we're getting back to normal now.

>

> The best thing to her is that she can eat anything she wants now. A liquid

> diet for a week was awful for her.

>

> I'll be back in touch again when it's more convenient on my regular

> computer. Best wishes to everyone!

>

> Michele W

> Aubrie's mom

>

>

>

> 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

> 7th International

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

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Michele,

Wonderful news!!!

pam

> ----------

> From: Michele Westmaas

> Reply To: CHARGE

> Sent: Thursday, May 6, 2004 12:13 AM

> To: CHARGE

> Subject: Aubrie's ears and mouth

>

> Hi!

> I'm having computer problems so I've been keeping up with reading and some

> replies but haven't posted about Aubrie's ear and palate surgery. She did

> so well! Her ears are amazing! They are still purple, swollen, and have

> stitches -- but you can see how wonderful they will be when they finish

> healing! She looks older without her little floppy ears.

>

> Her palate is also healing. I haven't been able to talk to her ST yet to

> get her reaction to her speech. I think it will take some time for the site

> to heal and then for the muscles to learn to work in their new position.

> However, I do think I'm hearing improvement as the days go on. It's so hard

> to tell with gradual changes. I taped her prior to surgery so I can tape

> her again and compare but I haven't had time yet.

>

> One thing of interest is that she says she can't blow her nose. Luckily,

> she hasn't had much need to, but she gets frustrated when she can't. I

> think it's a matter of relearning how to manage the air back there now.

>

> It was a crazy 2 weeks going for sudden surgery, coming home for 3 days,

> down to Shriners in St Louis, then on up to Chicago again for post-op. But

> we're getting back to normal now.

>

> The best thing to her is that she can eat anything she wants now. A liquid

> diet for a week was awful for her.

>

> I'll be back in touch again when it's more convenient on my regular

> computer. Best wishes to everyone!

>

> Michele W

> Aubrie's mom

>

>

>

> 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

> 7th International

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

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Michele,

Wonderful news!!!

pam

> ----------

> From: Michele Westmaas

> Reply To: CHARGE

> Sent: Thursday, May 6, 2004 12:13 AM

> To: CHARGE

> Subject: Aubrie's ears and mouth

>

> Hi!

> I'm having computer problems so I've been keeping up with reading and some

> replies but haven't posted about Aubrie's ear and palate surgery. She did

> so well! Her ears are amazing! They are still purple, swollen, and have

> stitches -- but you can see how wonderful they will be when they finish

> healing! She looks older without her little floppy ears.

>

> Her palate is also healing. I haven't been able to talk to her ST yet to

> get her reaction to her speech. I think it will take some time for the site

> to heal and then for the muscles to learn to work in their new position.

> However, I do think I'm hearing improvement as the days go on. It's so hard

> to tell with gradual changes. I taped her prior to surgery so I can tape

> her again and compare but I haven't had time yet.

>

> One thing of interest is that she says she can't blow her nose. Luckily,

> she hasn't had much need to, but she gets frustrated when she can't. I

> think it's a matter of relearning how to manage the air back there now.

>

> It was a crazy 2 weeks going for sudden surgery, coming home for 3 days,

> down to Shriners in St Louis, then on up to Chicago again for post-op. But

> we're getting back to normal now.

>

> The best thing to her is that she can eat anything she wants now. A liquid

> diet for a week was awful for her.

>

> I'll be back in touch again when it's more convenient on my regular

> computer. Best wishes to everyone!

>

> Michele W

> Aubrie's mom

>

>

>

> 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

> 7th International

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

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Michele, that's great - I've been so out of touch lately that I've missed

the fact Aub had surgery. Keep us updated!

Weir

Mom to Kennedy 6 yr old with CHARGE, 14, 12 and wife to Graeme.

New Brunswick, Canada

Weir homepage: http://personal.nbnet.nb.ca/gweir

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

Aubrie's ears and mouth

Hi!

I'm having computer problems so I've been keeping up with reading and some

replies but haven't posted about Aubrie's ear and palate surgery. She did

so well! Her ears are amazing! They are still purple, swollen, and have

stitches -- but you can see how wonderful they will be when they finish

healing! She looks older without her little floppy ears.

Her palate is also healing. I haven't been able to talk to her ST yet to

get her reaction to her speech. I think it will take some time for the

site

to heal and then for the muscles to learn to work in their new position.

However, I do think I'm hearing improvement as the days go on. It's so

hard

to tell with gradual changes. I taped her prior to surgery so I can tape

her again and compare but I haven't had time yet.

One thing of interest is that she says she can't blow her nose. Luckily,

she hasn't had much need to, but she gets frustrated when she can't. I

think it's a matter of relearning how to manage the air back there now.

It was a crazy 2 weeks going for sudden surgery, coming home for 3 days,

down to Shriners in St Louis, then on up to Chicago again for post-op.

But

we're getting back to normal now.

The best thing to her is that she can eat anything she wants now. A

liquid

diet for a week was awful for her.

I'll be back in touch again when it's more convenient on my regular

computer. Best wishes to everyone!

Michele W

Aubrie's mom

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

7th International

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

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

Michele, that's great - I've been so out of touch lately that I've missed

the fact Aub had surgery. Keep us updated!

Weir

Mom to Kennedy 6 yr old with CHARGE, 14, 12 and wife to Graeme.

New Brunswick, Canada

Weir homepage: http://personal.nbnet.nb.ca/gweir

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

Aubrie's ears and mouth

Hi!

I'm having computer problems so I've been keeping up with reading and some

replies but haven't posted about Aubrie's ear and palate surgery. She did

so well! Her ears are amazing! They are still purple, swollen, and have

stitches -- but you can see how wonderful they will be when they finish

healing! She looks older without her little floppy ears.

Her palate is also healing. I haven't been able to talk to her ST yet to

get her reaction to her speech. I think it will take some time for the

site

to heal and then for the muscles to learn to work in their new position.

However, I do think I'm hearing improvement as the days go on. It's so

hard

to tell with gradual changes. I taped her prior to surgery so I can tape

her again and compare but I haven't had time yet.

One thing of interest is that she says she can't blow her nose. Luckily,

she hasn't had much need to, but she gets frustrated when she can't. I

think it's a matter of relearning how to manage the air back there now.

It was a crazy 2 weeks going for sudden surgery, coming home for 3 days,

down to Shriners in St Louis, then on up to Chicago again for post-op.

But

we're getting back to normal now.

The best thing to her is that she can eat anything she wants now. A

liquid

diet for a week was awful for her.

I'll be back in touch again when it's more convenient on my regular

computer. Best wishes to everyone!

Michele W

Aubrie's mom

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

7th International

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

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

Michele, that's great - I've been so out of touch lately that I've missed

the fact Aub had surgery. Keep us updated!

Weir

Mom to Kennedy 6 yr old with CHARGE, 14, 12 and wife to Graeme.

New Brunswick, Canada

Weir homepage: http://personal.nbnet.nb.ca/gweir

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

Aubrie's ears and mouth

Hi!

I'm having computer problems so I've been keeping up with reading and some

replies but haven't posted about Aubrie's ear and palate surgery. She did

so well! Her ears are amazing! They are still purple, swollen, and have

stitches -- but you can see how wonderful they will be when they finish

healing! She looks older without her little floppy ears.

Her palate is also healing. I haven't been able to talk to her ST yet to

get her reaction to her speech. I think it will take some time for the

site

to heal and then for the muscles to learn to work in their new position.

However, I do think I'm hearing improvement as the days go on. It's so

hard

to tell with gradual changes. I taped her prior to surgery so I can tape

her again and compare but I haven't had time yet.

One thing of interest is that she says she can't blow her nose. Luckily,

she hasn't had much need to, but she gets frustrated when she can't. I

think it's a matter of relearning how to manage the air back there now.

It was a crazy 2 weeks going for sudden surgery, coming home for 3 days,

down to Shriners in St Louis, then on up to Chicago again for post-op.

But

we're getting back to normal now.

The best thing to her is that she can eat anything she wants now. A

liquid

diet for a week was awful for her.

I'll be back in touch again when it's more convenient on my regular

computer. Best wishes to everyone!

Michele W

Aubrie's mom

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

7th International

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

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

glad all is going well--I'm sure she is even more beautiful now!! She was a

curie pie to begin with!!

maria

Aubrie's ears and mouth

> Hi!

> I'm having computer problems so I've been keeping up with reading and some

> replies but haven't posted about Aubrie's ear and palate surgery. She did

> so well! Her ears are amazing! They are still purple, swollen, and have

> stitches -- but you can see how wonderful they will be when they finish

> healing! She looks older without her little floppy ears.

>

> Her palate is also healing. I haven't been able to talk to her ST yet to

> get her reaction to her speech. I think it will take some time for the

site

> to heal and then for the muscles to learn to work in their new position.

> However, I do think I'm hearing improvement as the days go on. It's so

hard

> to tell with gradual changes. I taped her prior to surgery so I can tape

> her again and compare but I haven't had time yet.

>

> One thing of interest is that she says she can't blow her nose. Luckily,

> she hasn't had much need to, but she gets frustrated when she can't. I

> think it's a matter of relearning how to manage the air back there now.

>

> It was a crazy 2 weeks going for sudden surgery, coming home for 3 days,

> down to Shriners in St Louis, then on up to Chicago again for post-op.

But

> we're getting back to normal now.

>

> The best thing to her is that she can eat anything she wants now. A

liquid

> diet for a week was awful for her.

>

> I'll be back in touch again when it's more convenient on my regular

> computer. Best wishes to everyone!

>

> Michele W

> Aubrie's mom

>

>

>

> 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

> 7th International

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

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

glad all is going well--I'm sure she is even more beautiful now!! She was a

curie pie to begin with!!

maria

Aubrie's ears and mouth

> Hi!

> I'm having computer problems so I've been keeping up with reading and some

> replies but haven't posted about Aubrie's ear and palate surgery. She did

> so well! Her ears are amazing! They are still purple, swollen, and have

> stitches -- but you can see how wonderful they will be when they finish

> healing! She looks older without her little floppy ears.

>

> Her palate is also healing. I haven't been able to talk to her ST yet to

> get her reaction to her speech. I think it will take some time for the

site

> to heal and then for the muscles to learn to work in their new position.

> However, I do think I'm hearing improvement as the days go on. It's so

hard

> to tell with gradual changes. I taped her prior to surgery so I can tape

> her again and compare but I haven't had time yet.

>

> One thing of interest is that she says she can't blow her nose. Luckily,

> she hasn't had much need to, but she gets frustrated when she can't. I

> think it's a matter of relearning how to manage the air back there now.

>

> It was a crazy 2 weeks going for sudden surgery, coming home for 3 days,

> down to Shriners in St Louis, then on up to Chicago again for post-op.

But

> we're getting back to normal now.

>

> The best thing to her is that she can eat anything she wants now. A

liquid

> diet for a week was awful for her.

>

> I'll be back in touch again when it's more convenient on my regular

> computer. Best wishes to everyone!

>

> Michele W

> Aubrie's mom

>

>

>

> 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

> 7th International

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

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

glad all is going well--I'm sure she is even more beautiful now!! She was a

curie pie to begin with!!

maria

Aubrie's ears and mouth

> Hi!

> I'm having computer problems so I've been keeping up with reading and some

> replies but haven't posted about Aubrie's ear and palate surgery. She did

> so well! Her ears are amazing! They are still purple, swollen, and have

> stitches -- but you can see how wonderful they will be when they finish

> healing! She looks older without her little floppy ears.

>

> Her palate is also healing. I haven't been able to talk to her ST yet to

> get her reaction to her speech. I think it will take some time for the

site

> to heal and then for the muscles to learn to work in their new position.

> However, I do think I'm hearing improvement as the days go on. It's so

hard

> to tell with gradual changes. I taped her prior to surgery so I can tape

> her again and compare but I haven't had time yet.

>

> One thing of interest is that she says she can't blow her nose. Luckily,

> she hasn't had much need to, but she gets frustrated when she can't. I

> think it's a matter of relearning how to manage the air back there now.

>

> It was a crazy 2 weeks going for sudden surgery, coming home for 3 days,

> down to Shriners in St Louis, then on up to Chicago again for post-op.

But

> we're getting back to normal now.

>

> The best thing to her is that she can eat anything she wants now. A

liquid

> diet for a week was awful for her.

>

> I'll be back in touch again when it's more convenient on my regular

> computer. Best wishes to everyone!

>

> Michele W

> Aubrie's mom

>

>

>

> 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

> 7th International

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

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Hi ,

Glad things seem to have gone well for Aubrie. No doubt it will take

time for the muscles to start working properly, but fingers crossed for

you that the op has helped.

Vicky

Mum to Jodie(12) CHARGE, (7) & Chloe (5 mnths)

Aubrie's ears and mouth

Hi!

I'm having computer problems so I've been keeping up with reading and

some

replies but haven't posted about Aubrie's ear and palate surgery. She

did

so well! Her ears are amazing! They are still purple, swollen, and

have

stitches -- but you can see how wonderful they will be when they finish

healing! She looks older without her little floppy ears.

Her palate is also healing. I haven't been able to talk to her ST yet

to

get her reaction to her speech. I think it will take some time for the

site

to heal and then for the muscles to learn to work in their new position.

However, I do think I'm hearing improvement as the days go on. It's so

hard

to tell with gradual changes. I taped her prior to surgery so I can

tape

her again and compare but I haven't had time yet.

One thing of interest is that she says she can't blow her nose.

Luckily,

she hasn't had much need to, but she gets frustrated when she can't. I

think it's a matter of relearning how to manage the air back there now.

It was a crazy 2 weeks going for sudden surgery, coming home for 3 days,

down to Shriners in St Louis, then on up to Chicago again for post-op.

But

we're getting back to normal now.

The best thing to her is that she can eat anything she wants now. A

liquid

diet for a week was awful for her.

I'll be back in touch again when it's more convenient on my regular

computer. Best wishes to everyone!

Michele W

Aubrie's mom

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

7th International

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

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

Hi ,

Glad things seem to have gone well for Aubrie. No doubt it will take

time for the muscles to start working properly, but fingers crossed for

you that the op has helped.

Vicky

Mum to Jodie(12) CHARGE, (7) & Chloe (5 mnths)

Aubrie's ears and mouth

Hi!

I'm having computer problems so I've been keeping up with reading and

some

replies but haven't posted about Aubrie's ear and palate surgery. She

did

so well! Her ears are amazing! They are still purple, swollen, and

have

stitches -- but you can see how wonderful they will be when they finish

healing! She looks older without her little floppy ears.

Her palate is also healing. I haven't been able to talk to her ST yet

to

get her reaction to her speech. I think it will take some time for the

site

to heal and then for the muscles to learn to work in their new position.

However, I do think I'm hearing improvement as the days go on. It's so

hard

to tell with gradual changes. I taped her prior to surgery so I can

tape

her again and compare but I haven't had time yet.

One thing of interest is that she says she can't blow her nose.

Luckily,

she hasn't had much need to, but she gets frustrated when she can't. I

think it's a matter of relearning how to manage the air back there now.

It was a crazy 2 weeks going for sudden surgery, coming home for 3 days,

down to Shriners in St Louis, then on up to Chicago again for post-op.

But

we're getting back to normal now.

The best thing to her is that she can eat anything she wants now. A

liquid

diet for a week was awful for her.

I'll be back in touch again when it's more convenient on my regular

computer. Best wishes to everyone!

Michele W

Aubrie's mom

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

7th International

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

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

[Guest guest]

,

I'm so glad everything went well.

Rochel

[Guest guest]

I'm glad Aubrie is doing well after her surgery. I'm behind reading but

trying to catch up. I've been going to the doctor again preparing for

another surgery, probably in June.

Kay

Aubrie's ears and mouth

> Hi!

> I'm having computer problems so I've been keeping up with reading and some

> replies but haven't posted about Aubrie's ear and palate surgery. She did

> so well! Her ears are amazing! They are still purple, swollen, and have

> stitches -- but you can see how wonderful they will be when they finish

> healing! She looks older without her little floppy ears.

>

> Her palate is also healing. I haven't been able to talk to her ST yet to

> get her reaction to her speech. I think it will take some time for the

site

> to heal and then for the muscles to learn to work in their new position.

> However, I do think I'm hearing improvement as the days go on. It's so

hard

> to tell with gradual changes. I taped her prior to surgery so I can tape

> her again and compare but I haven't had time yet.

>

> One thing of interest is that she says she can't blow her nose. Luckily,

> she hasn't had much need to, but she gets frustrated when she can't. I

> think it's a matter of relearning how to manage the air back there now.

>

> It was a crazy 2 weeks going for sudden surgery, coming home for 3 days,

> down to Shriners in St Louis, then on up to Chicago again for post-op.

But

> we're getting back to normal now.

>

> The best thing to her is that she can eat anything she wants now. A

liquid

> diet for a week was awful for her.

>

> I'll be back in touch again when it's more convenient on my regular

> computer. Best wishes to everyone!

>

> Michele W

> Aubrie's mom

>

>

>

> 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

> 7th International

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

Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

>

>

[Guest guest]

Kay -

What is your upcoming surgery?

Michele W

Aubrie's mom

[Guest guest]

Kay Lynd -

I've known a few people who have had success with that. I hope it goes well

for you! You are very brave to give it a try.

Michele W

Aubrie's mom

[Guest guest]

Kay -

Good for you for hearing the wake up call. Often times, we ignore call

after call after call. I hope that you will be like Pam and look back on

this as one of the best decisions you've ever made.

Michele W

[Guest guest]

Kay -

Good for you for hearing the wake up call. Often times, we ignore call

after call after call. I hope that you will be like Pam and look back on

this as one of the best decisions you've ever made.

Michele W

[Guest guest]

Kay -

Good for you for hearing the wake up call. Often times, we ignore call

after call after call. I hope that you will be like Pam and look back on

this as one of the best decisions you've ever made.

Michele W