Re: Re: Conference Reminder

[Guest guest]

When will the conference be next year? I have two sons with CHARGE and they

are both having surgery around the time of the conferences this year so I

won't be able to attend but would love to attend the next one.

Beals

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[Guest guest]

thank you for replying. I am in Houston and I remember reading something

about the one here in Houston. My sons Kai and are 27 months and 5

months. We didn't officially get diagnoised with CHARGE for Kai until he was

over

a year old and was confirmed about a month ago. We are lucky to be

working with Dr Lalani who is doing a CHARGE study. If you haven't signed up I

will give you the information to get in touch with her and her collegues.

mother of Wesley, 3, Kai 2 CHARGE, and 5 months CHARGE, and

wife of Troy

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[Guest guest]

thank you. I didn't realize they were every other year. I just joined this

list a few days ago because I was wanting to know about other families dealing

with CHARGE. Not many people have heard of it when I talk to them so it's

nice to finally find people who I don't have to explain what choanal atresia

is or CHARGE syndrome is.

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[Guest guest]

Very soon. We keep adding things.

n

wrote:

> n,

>

> When will the additional conference information be sent out?

>

> and

>

>

>

[Guest guest]

,

The conferences take place every two years, so the next one will be in 2005.

I'm not exactly sure about the location yet though.

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

Saint , New Brunswick, Canada

Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

Re: Re: Conference Reminder

When will the conference be next year? I have two sons with CHARGE and they

are both having surgery around the time of the conferences this year so I

won't be able to attend but would love to attend the next one.

Beals

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[Guest guest]

,

I think most are aware of Dr. Lalani's work, I am already involved but if you

want to re-send the info for any newcomers on the list, feel free! Glad to meet

you!

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

Saint , New Brunswick, Canada

Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

Re: Re: Conference Reminder

thank you for replying. I am in Houston and I remember reading something

about the one here in Houston. My sons Kai and are 27 months and 5

months. We didn't officially get diagnoised with CHARGE for Kai until he was

over

a year old and was confirmed about a month ago. We are lucky to be

working with Dr Lalani who is doing a CHARGE study. If you haven't signed up

I

will give you the information to get in touch with her and her collegues.

mother of Wesley, 3, Kai 2 CHARGE, and 5 months CHARGE, and

wife of Troy

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[Guest guest]

Sorry, , we do our conferences every two years so the next one

will be in 2005. There has been a mini conference in land in the off

years. I don't know if there will be one in 2004. If there is, we will

announce it in the Foundation's newsletter.

n

Evbeals@... wrote:

> When will the conference be next year? I have two sons with CHARGE and

> they

> are both having surgery around the time of the conferences this year so I

> won't be able to attend but would love to attend the next one.

>

> Beals

--

n A Norbury, Executive Director

CHARGE Syndrome Foundation, Inc.

2004 Parkade Blvd, Columbia MO 65202 USA

phone/fax; (families only)

mailto:mnorbury@... or mailto:marion@...

web site: http://www.chargesyndrome.org

[Guest guest]

Kai has had to have 13 surgeries so far to try and keep his nose open as

well. I love his ENT. He is a God sent. He has to go back under in October to

check on the progress to see how much it has closed because the last time it

was only 7 months and it had almost completely reclosed. If it is like that

again then the stints are going back in for a third time for six months this

time. I am hoping they won't have to go back in because he is so active now and

has finally gotten over his oral aversion. I hope your daughter doesn't have

to go thru much more for that.

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[Guest guest]

Kai is 27 months now. He is a sweetie though. The nurses love taking care

of him because he is so sweet and generally a good boy for them. His choanal

atresia was a complete blockage bilateral. We found out in the delivery room

with him.

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[Guest guest]

I think it said in the newsletter in Miami?

Re: Re: Conference Reminder

>

>

> When will the conference be next year? I have two sons with CHARGE and

they

> are both having surgery around the time of the conferences this year so

I

> won't be able to attend but would love to attend the next one.

>

> Beals

>

> SAVE 20% on Gasoline <A

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> <A

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bers/index.cgi?Evbeals</A>

>

>

>

>

>

>

>

>

>

[Guest guest]

,

Kennedy was born with bilateral bony choanal atresia and has had 7 surgeries to

TRY and keep her poor little nose open...you have come to the right place!!!

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

Saint , New Brunswick, Canada

Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

Re: Re: Conference Reminder

thank you. I didn't realize they were every other year. I just joined this

list a few days ago because I was wanting to know about other families dealing

with CHARGE. Not many people have heard of it when I talk to them so it's

nice to finally find people who I don't have to explain what choanal atresia

is or CHARGE syndrome is.

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HREF= " http://www.jowoods.appgas.com/ " >http://www.jowoods.appgas.com/</A>

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[Guest guest]

,

How old is Kai now?

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

Saint , New Brunswick, Canada

Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

Re: Re: Conference Reminder

Kai has had to have 13 surgeries so far to try and keep his nose open as

well. I love his ENT. He is a God sent. He has to go back under in October

to

check on the progress to see how much it has closed because the last time it

was only 7 months and it had almost completely reclosed. If it is like that

again then the stints are going back in for a third time for six months this

time. I am hoping they won't have to go back in because he is so active now

and

has finally gotten over his oral aversion. I hope your daughter doesn't have

to go thru much more for that.

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[Guest guest]

,

What part of Houston are you in? I'm in the NW. Please send the info about the

study.

Thanks,

Re: Re: Conference Reminder

thank you for replying. I am in Houston and I remember reading something

about the one here in Houston. My sons Kai and are 27 months and 5

months. We didn't officially get diagnoised with CHARGE for Kai until he was

over

a year old and was confirmed about a month ago. We are lucky to be

working with Dr Lalani who is doing a CHARGE study. If you haven't signed up

I

will give you the information to get in touch with her and her collegues.

mother of Wesley, 3, Kai 2 CHARGE, and 5 months CHARGE, and

wife of Troy

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[Guest guest]

In a message dated 6/2/2003 5:35:04 PM Pacific Daylight Time,

gweir@... writes:

> had 7 surgeries to TRY and keep her poor little nose open...you have come

> to the right place!!!

>

,

Sounds like Tryny. Have your ENT's tried going through the palet instead of

the nose. We had Tryny's 9th surgery done through the palet (Zak's plastic

surgeon did it instead of ENT) and reclosed yet and that was 2 years ago.

Debra

[Guest guest]

Did you successfully get both nostril's open? We've tried several times and

have only kept one side upen--I'm not anxious for more surgeries.

Lori Myers

Mom to (5 1/2), (2 1/2 CHARGE Association, CHD, ECMO 12 days,

Bi-lateral

Choanal Atresia, G-button, partial hearing loss), and Emma (7 months)

Dallas, Texas

Weir wrote:

> ,

> Kennedy was born with bilateral bony choanal atresia and has had 7 surgeries

to TRY and keep her poor little nose open...you have come to the right place!!!

> ~ Weir

> Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

> Saint , New Brunswick, Canada

> Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir

> CHARGE Syndrome Canada - http://www.chargesyndrome.ca

>

> Re: Re: Conference Reminder

>

> thank you. I didn't realize they were every other year. I just joined this

> list a few days ago because I was wanting to know about other families

dealing

> with CHARGE. Not many people have heard of it when I talk to them so it's

> nice to finally find people who I don't have to explain what choanal atresia

> is or CHARGE syndrome is.

>

>

>

> SAVE 20% on Gasoline <A

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> <A

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/index.cgi?Evbeals</A>

>

>

>

>

>

[Guest guest]

Kai is at home right now and doing really good for all that he has been thru

for his bilateral choanal atresia surgery wise. He is doing well with speech

and his hearing aids are helping him so much. I never though I would hear him

say mommy and now he loves shouting it at me to get my attention. He is

doing some sign. His favorite is NO and he says it loudly too. lol. I feel

very

lucky with the progress he has made. He almost is walking too which is a

great joy for me because he was having such problems for so long. my

newer addition is a joy too. We are still trying to know the full extent of his

hearing loss and such. He is completely missing his semi circular canals in

his right ear but the other is fine so we don't know how much that will effect

his hearing. He has a severe cleft palate and lip (bilateral for both) and was

in the ICU for two weeks because of aspiration pnemounia at two months. But

the did a fundo and a g-button at that time and he has grown like a weed ever

since. He is so happy all the time so I just feel very blessed. He will have

his first repair surgery on June 24th and Kai will have another surgery for

his undescended testes on June 27th so I will be basket case stressed out

crying mom for that week. Plus we are about to move too. But I can handle this

cause it's just across town. Sorry for the long post. It's so nice to

finally meet other parents who know what I'm going thru and been thru.

Liz

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[Guest guest]

Debra,

Her initial repair was transpalatal with 6 weeks of post op stenting... didn't

work too well...

Re: Re: Conference Reminder

In a message dated 6/2/2003 5:35:04 PM Pacific Daylight Time,

gweir@... writes:

> had 7 surgeries to TRY and keep her poor little nose open...you have come

> to the right place!!!

>

,

Sounds like Tryny. Have your ENT's tried going through the palet instead of

the nose. We had Tryny's 9th surgery done through the palet (Zak's plastic

surgeon did it instead of ENT) and reclosed yet and that was 2 years ago.

Debra

[Guest guest]

I remember well finding out in the delivery room...pretty scary. I must've

maybe missed your initial post, is Kai still in hospital?

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

Saint , New Brunswick, Canada

Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

Re: Re: Conference Reminder

Kai is 27 months now. He is a sweetie though. The nurses love taking care

of him because he is so sweet and generally a good boy for them. His choanal

atresia was a complete blockage bilateral. We found out in the delivery room

with him.

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[Guest guest]

Nope! We're still trying...unless it gets really bad, we're having a surgical

hiatus though, due to anaphylactic anesthetic reactions lately...

Re: Re: Conference Reminder

>

> thank you. I didn't realize they were every other year. I just joined

this

> list a few days ago because I was wanting to know about other families

dealing

> with CHARGE. Not many people have heard of it when I talk to them so

it's

> nice to finally find people who I don't have to explain what choanal

atresia

> is or CHARGE syndrome is.

>

>

>

> SAVE 20% on Gasoline <A

HREF= " http://www.jowoods.appgas.com/ " >http://www.jowoods.appgas.com/</A>

> <A

HREF= " http://hits4pay.com/members/index.cgi?Evbeals " >http://hits4pay.com/members\

/index.cgi?Evbeals</A>

>

>

>

>

>

[Guest guest]

Liz,

It is wonderful to meet other parents who " know your life " so to speak. Kai

sounds like he has got quite a little personality and is a real little ray of

sunshine despite all the horrible medical things he's had to endure. Sounds

like a pretty typical CHARGEr to me! Good luck with the move!

~ Weir

Mom to Kennedy, 5yr old CHARGEr, 13, 12, and wife to Graeme

Saint , New Brunswick, Canada

Visit the Weir Family Website - http://personal.nbnet.nb.ca/gweir

CHARGE Syndrome Canada - http://www.chargesyndrome.ca

Re: Re: Conference Reminder

Kai is at home right now and doing really good for all that he has been thru

for his bilateral choanal atresia surgery wise. He is doing well with speech

and his hearing aids are helping him so much. I never though I would hear him

say mommy and now he loves shouting it at me to get my attention. He is

doing some sign. His favorite is NO and he says it loudly too. lol. I feel

very

lucky with the progress he has made. He almost is walking too which is a

great joy for me because he was having such problems for so long. my

newer addition is a joy too. We are still trying to know the full extent of

his

hearing loss and such. He is completely missing his semi circular canals in

his right ear but the other is fine so we don't know how much that will effect

his hearing. He has a severe cleft palate and lip (bilateral for both) and

was

in the ICU for two weeks because of aspiration pnemounia at two months. But

the did a fundo and a g-button at that time and he has grown like a weed ever

since. He is so happy all the time so I just feel very blessed. He will have

his first repair surgery on June 24th and Kai will have another surgery for

his undescended testes on June 27th so I will be basket case stressed out

crying mom for that week. Plus we are about to move too. But I can handle

this

cause it's just across town. Sorry for the long post. It's so nice to

finally meet other parents who know what I'm going thru and been thru.

Liz

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[Guest guest]

In a message dated 6/3/2003 1:06:46 PM Pacific Daylight Time,

gweir@... writes:

> 6 weeks of post op stenting

When Tryny had his done through his palet, he didn't have any stents in his

nose at all.

[Guest guest]

Alabama would be a good place.

Kay

She who laughs.... LASTS

Re: Re: Conference Reminder

>

>

> When will the conference be next year? I have two sons with CHARGE and

they

> are both having surgery around the time of the conferences this year so

I

> won't be able to attend but would love to attend the next one.

>

> Beals

>

> SAVE 20% on Gasoline <A

HREF= " http://www.jowoods.appgas.com/ " >http://www.jowoods.appgas.com/</A>

> <A

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bers/index.cgi?Evbeals</A>

>

>

>

>

>

>

>

>

>

[Guest guest]

Oh wow is it in July. Miami is so very hot in July!

Kay

She who laughs.... LASTS

Re: Re: Conference Reminder

> >

> >

> > When will the conference be next year? I have two sons with CHARGE

and

> they

> > are both having surgery around the time of the conferences this year

so

> I

> > won't be able to attend but would love to attend the next one.

> >

> > Beals

> >

> > SAVE 20% on Gasoline <A

> HREF= " http://www.jowoods.appgas.com/ " >http://www.jowoods.appgas.com/</A>

> > <A

>

HREF= " http://hits4pay.com/members/index.cgi?Evbeals " >http://hits4pay.com/mem

> bers/index.cgi?Evbeals</A>

> >

> >

> >

> >

> >

> >

> >

> >

> >

[Guest guest]

Yes-Miami Beach in July is VERY hot. But, everything is air conditioned.

The thing to remember is that we go where we have someone who's willing to give

their life over to planning the conference, And thanks to those who do!

Barbara-mom,(CHARGE)9, Rosie13