RE: (unknown)

[Guest guest]

Aubrie loves Barney most, but also likes many other characters. She loves

the computer. It's not her lack of interest holding us back -- it's my lack

of drive. I just haven't taken the time to work on with her. We are

fortunate to belong to a toy/computer lending program here so we've got

several children's programs on loan rather than having to purchase them. We

also have an intelli-keys that I planned on working on but didn't get to.

Now that I'm thinking about it, I should spend some time each day for the

next week or so until her IEP meeting. We will be discussing technology.

I'd be great if I could prove her skill level by then.

Michele

(unknown)

>

>

> > Hi ,

> > We go to Children's. is on schedule for eye surgery. Outpt -

> > strabismus. We see Dr. Greg. I have talked with the family you

> > mentioned but never met them. I also checked into the orthoptist

> > that several people mentioned on the list. It seems that an

> > orthoptist is to a pediatric opthomalogist what a chiropracter is to

> > a neurosurgeon. Not to say that we won't pursue this also, it just

> > seems that they don't work together much. I called for a referral to

> > one locally and had a very difficult time finding one. I was able to

> > find at least one but it may be difficult to get in and have it paid

> > for by insurance. Comes under the category of " vision therapy " and

> > may be difficult to fund. It may be worthwhile to go once or twice,

> > pay out of pocket, and at least try and learn some of the exercises.

> > is doing well otherwise with his implant; learning to talk

> > and sign. Using about 50 words spontaneously a day and has learned

> > about 400 words/signs in the last few months but it is so much

> > work!!! Thanks for asking..hope your doing well. Rose

> >

> >

> >

> > 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

> > 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> > July 25-27, 2003. Information will be available at our website

> > www.chargesyndrome.org or by calling 1-.

> >

> >

> >

[Guest guest]

Good luck Michele, knowing Aubrie I'm sure she'll fly with it as soon as she

realizes how fun it is....

~ Weir

Mom to Kennedy, 4yr old CHARGEr, 13, 11, and wife to Graeme

New Brunswick, Canada

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

ICQ# 1426476

(unknown)

>

>

> > Hi ,

> > We go to Children's. is on schedule for eye surgery. Outpt -

> > strabismus. We see Dr. Greg. I have talked with the family you

> > mentioned but never met them. I also checked into the orthoptist

> > that several people mentioned on the list. It seems that an

> > orthoptist is to a pediatric opthomalogist what a chiropracter is to

> > a neurosurgeon. Not to say that we won't pursue this also, it just

> > seems that they don't work together much. I called for a referral to

> > one locally and had a very difficult time finding one. I was able to

> > find at least one but it may be difficult to get in and have it paid

> > for by insurance. Comes under the category of " vision therapy " and

> > may be difficult to fund. It may be worthwhile to go once or twice,

> > pay out of pocket, and at least try and learn some of the exercises.

> > is doing well otherwise with his implant; learning to talk

> > and sign. Using about 50 words spontaneously a day and has learned

> > about 400 words/signs in the last few months but it is so much

> > work!!! Thanks for asking..hope your doing well. Rose

> >

> >

> >

> > 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

> > 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> > July 25-27, 2003. Information will be available at our website

> > www.chargesyndrome.org or by calling 1-.

> >

> >

> >

[Guest guest]

I was wondering what the company or whatever is that you all have

that lend you toys to you, that would be great for Brittney, we have

trouble finding toys that she likes or helps her want to sit up and

when she lays on her belly to get her to hold up her head and put

weight on her hands.. Tina

mom to Cody 2y, Brittney 1y CHARgE

and wife to ..

> Aubrie loves Barney most, but also likes many other characters.

She loves

> the computer. It's not her lack of interest holding us back --

it's my lack

> of drive. I just haven't taken the time to work on with her. We

are

> fortunate to belong to a toy/computer lending program here so

we've got

> several children's programs on loan rather than having to purchase

them. We

> also have an intelli-keys that I planned on working on but didn't

get to.

>

> Now that I'm thinking about it, I should spend some time each day

for the

> next week or so until her IEP meeting. We will be discussing

technology.

> I'd be great if I could prove her skill level by then.

>

> Michele

> (unknown)

> >

> >

> > > Hi ,

> > > We go to Children's. is on schedule for eye

surgery. Outpt -

> > > strabismus. We see Dr. Greg. I have talked with the family

you

> > > mentioned but never met them. I also checked into the

orthoptist

> > > that several people mentioned on the list. It seems that an

> > > orthoptist is to a pediatric opthomalogist what a

chiropracter is to

> > > a neurosurgeon. Not to say that we won't pursue this also,

it just

> > > seems that they don't work together much. I called for a

referral to

> > > one locally and had a very difficult time finding one. I was

able to

> > > find at least one but it may be difficult to get in and have

it paid

> > > for by insurance. Comes under the category of " vision

therapy " and

> > > may be difficult to fund. It may be worthwhile to go once

or twice,

> > > pay out of pocket, and at least try and learn some of the

exercises.

> > > is doing well otherwise with his implant; learning

to talk

> > > and sign. Using about 50 words spontaneously a day and has

learned

> > > about 400 words/signs in the last few months but it is so

much

> > > work!!! Thanks for asking..hope your doing well. Rose

> > >

> > >

> > >

> > > 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@c... or visit

> > > the CHARGE Syndrome Foundation web page

> > > at http://www.chargesyndrome.org

> > > 6th International CHARGE Syndrome Conference, Cleveland,

Ohio,

> > > July 25-27, 2003. Information will be available at our

website

> > > www.chargesyndrome.org or by calling 1-.

> > >

> > >

> > >

[Guest guest]

Tina-

We use Lekotek. I think it's a national program. Ours is run through the

UCP office. I'm not sure how I got connected to them. You might try your

area UCP office. BTW-- UCP is not just for folks with cerebal palsy as I

used to think -- it's for all disabilities. I don't know if you'd find

Lekotek in the phone book or online. The best bet may be to ask around to

your therapists etc to see if anyone is aware of a Lekotek program in your

area. It has been wonderful. Aubrie used one of the cause-and-effect toys

they have for kids with vision and hearing deficits. It was the first toy

that got her attention. Without it, she would have taken much longer to

learn the concept of cause-and-effect because she couldn't manipulate

typcial baby toys of that type.

Michele W

Aubrie's mom

(unknown)

> > >

> > >

> > > > Hi ,

> > > > We go to Children's. is on schedule for eye

> surgery. Outpt -

> > > > strabismus. We see Dr. Greg. I have talked with the family

> you

> > > > mentioned but never met them. I also checked into the

> orthoptist

> > > > that several people mentioned on the list. It seems that an

> > > > orthoptist is to a pediatric opthomalogist what a

> chiropracter is to

> > > > a neurosurgeon. Not to say that we won't pursue this also,

> it just

> > > > seems that they don't work together much. I called for a

> referral to

> > > > one locally and had a very difficult time finding one. I was

> able to

> > > > find at least one but it may be difficult to get in and have

> it paid

> > > > for by insurance. Comes under the category of " vision

> therapy " and

> > > > may be difficult to fund. It may be worthwhile to go once

> or twice,

> > > > pay out of pocket, and at least try and learn some of the

> exercises.

> > > > is doing well otherwise with his implant; learning

> to talk

> > > > and sign. Using about 50 words spontaneously a day and has

> learned

> > > > about 400 words/signs in the last few months but it is so

> much

> > > > work!!! Thanks for asking..hope your doing well. Rose

> > > >

> > > >

> > > >

> > > > 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@c... or visit

> > > > the CHARGE Syndrome Foundation web page

> > > > at http://www.chargesyndrome.org

> > > > 6th International CHARGE Syndrome Conference, Cleveland,

> Ohio,

> > > > July 25-27, 2003. Information will be available at our

> website

> > > > www.chargesyndrome.org or by calling 1-.

> > > >

> > > >

> > > >

[Guest guest]

Tina,

In NC Jillyan is followed by Iredell County Mental Health -- that is where

we get our free PT for her through the state. They have a lending library

with toys, durable medical equipment, feeder seats, light boxes with

learning materials. We can borrow what ever we need. If you are getting

assistance through your county/state they should be able to put you in touch

with someone.

Huggins

Wife to Robin, Mom to Hailey (5) and Jillyan (15 months)

Re: (unknown)

I was wondering what the company or whatever is that you all have

that lend you toys to you, that would be great for Brittney, we have

trouble finding toys that she likes or helps her want to sit up and

when she lays on her belly to get her to hold up her head and put

weight on her hands.. Tina

mom to Cody 2y, Brittney 1y CHARgE

and wife to ..

> Aubrie loves Barney most, but also likes many other characters.

She loves

> the computer. It's not her lack of interest holding us back --

it's my lack

> of drive. I just haven't taken the time to work on with her. We

are

> fortunate to belong to a toy/computer lending program here so

we've got

> several children's programs on loan rather than having to purchase

them. We

> also have an intelli-keys that I planned on working on but didn't

get to.

>

> Now that I'm thinking about it, I should spend some time each day

for the

> next week or so until her IEP meeting. We will be discussing

technology.

> I'd be great if I could prove her skill level by then.

>

> Michele

> (unknown)

> >

> >

> > > Hi ,

> > > We go to Children's. is on schedule for eye

surgery. Outpt -

> > > strabismus. We see Dr. Greg. I have talked with the family

you

> > > mentioned but never met them. I also checked into the

orthoptist

> > > that several people mentioned on the list. It seems that an

> > > orthoptist is to a pediatric opthomalogist what a

chiropracter is to

> > > a neurosurgeon. Not to say that we won't pursue this also,

it just

> > > seems that they don't work together much. I called for a

referral to

> > > one locally and had a very difficult time finding one. I was

able to

> > > find at least one but it may be difficult to get in and have

it paid

> > > for by insurance. Comes under the category of " vision

therapy " and

> > > may be difficult to fund. It may be worthwhile to go once

or twice,

> > > pay out of pocket, and at least try and learn some of the

exercises.

> > > is doing well otherwise with his implant; learning

to talk

> > > and sign. Using about 50 words spontaneously a day and has

learned

> > > about 400 words/signs in the last few months but it is so

much

> > > work!!! Thanks for asking..hope your doing well. Rose

> > >

> > >

> > >

> > > 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@c... or visit

> > > the CHARGE Syndrome Foundation web page

> > > at http://www.chargesyndrome.org

> > > 6th International CHARGE Syndrome Conference, Cleveland,

Ohio,

> > > July 25-27, 2003. Information will be available at our

website

> > > www.chargesyndrome.org or by calling 1-.

> > >

> > >

> > >

[Guest guest]

Tina,

In NC Jillyan is followed by Iredell County Mental Health -- that is where

we get our free PT for her through the state. They have a lending library

with toys, durable medical equipment, feeder seats, light boxes with

learning materials. We can borrow what ever we need. If you are getting

assistance through your county/state they should be able to put you in touch

with someone.

Huggins

Wife to Robin, Mom to Hailey (5) and Jillyan (15 months)

Re: (unknown)

I was wondering what the company or whatever is that you all have

that lend you toys to you, that would be great for Brittney, we have

trouble finding toys that she likes or helps her want to sit up and

when she lays on her belly to get her to hold up her head and put

weight on her hands.. Tina

mom to Cody 2y, Brittney 1y CHARgE

and wife to ..

> Aubrie loves Barney most, but also likes many other characters.

She loves

> the computer. It's not her lack of interest holding us back --

it's my lack

> of drive. I just haven't taken the time to work on with her. We

are

> fortunate to belong to a toy/computer lending program here so

we've got

> several children's programs on loan rather than having to purchase

them. We

> also have an intelli-keys that I planned on working on but didn't

get to.

>

> Now that I'm thinking about it, I should spend some time each day

for the

> next week or so until her IEP meeting. We will be discussing

technology.

> I'd be great if I could prove her skill level by then.

>

> Michele

> (unknown)

> >

> >

> > > Hi ,

> > > We go to Children's. is on schedule for eye

surgery. Outpt -

> > > strabismus. We see Dr. Greg. I have talked with the family

you

> > > mentioned but never met them. I also checked into the

orthoptist

> > > that several people mentioned on the list. It seems that an

> > > orthoptist is to a pediatric opthomalogist what a

chiropracter is to

> > > a neurosurgeon. Not to say that we won't pursue this also,

it just

> > > seems that they don't work together much. I called for a

referral to

> > > one locally and had a very difficult time finding one. I was

able to

> > > find at least one but it may be difficult to get in and have

it paid

> > > for by insurance. Comes under the category of " vision

therapy " and

> > > may be difficult to fund. It may be worthwhile to go once

or twice,

> > > pay out of pocket, and at least try and learn some of the

exercises.

> > > is doing well otherwise with his implant; learning

to talk

> > > and sign. Using about 50 words spontaneously a day and has

learned

> > > about 400 words/signs in the last few months but it is so

much

> > > work!!! Thanks for asking..hope your doing well. Rose

> > >

> > >

> > >

> > > 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@c... or visit

> > > the CHARGE Syndrome Foundation web page

> > > at http://www.chargesyndrome.org

> > > 6th International CHARGE Syndrome Conference, Cleveland,

Ohio,

> > > July 25-27, 2003. Information will be available at our

website

> > > www.chargesyndrome.org or by calling 1-.

> > >

> > >

> > >

[Guest guest]

Tina,

In NC Jillyan is followed by Iredell County Mental Health -- that is where

we get our free PT for her through the state. They have a lending library

with toys, durable medical equipment, feeder seats, light boxes with

learning materials. We can borrow what ever we need. If you are getting

assistance through your county/state they should be able to put you in touch

with someone.

Huggins

Wife to Robin, Mom to Hailey (5) and Jillyan (15 months)

Re: (unknown)

I was wondering what the company or whatever is that you all have

that lend you toys to you, that would be great for Brittney, we have

trouble finding toys that she likes or helps her want to sit up and

when she lays on her belly to get her to hold up her head and put

weight on her hands.. Tina

mom to Cody 2y, Brittney 1y CHARgE

and wife to ..

> Aubrie loves Barney most, but also likes many other characters.

She loves

> the computer. It's not her lack of interest holding us back --

it's my lack

> of drive. I just haven't taken the time to work on with her. We

are

> fortunate to belong to a toy/computer lending program here so

we've got

> several children's programs on loan rather than having to purchase

them. We

> also have an intelli-keys that I planned on working on but didn't

get to.

>

> Now that I'm thinking about it, I should spend some time each day

for the

> next week or so until her IEP meeting. We will be discussing

technology.

> I'd be great if I could prove her skill level by then.

>

> Michele

> (unknown)

> >

> >

> > > Hi ,

> > > We go to Children's. is on schedule for eye

surgery. Outpt -

> > > strabismus. We see Dr. Greg. I have talked with the family

you

> > > mentioned but never met them. I also checked into the

orthoptist

> > > that several people mentioned on the list. It seems that an

> > > orthoptist is to a pediatric opthomalogist what a

chiropracter is to

> > > a neurosurgeon. Not to say that we won't pursue this also,

it just

> > > seems that they don't work together much. I called for a

referral to

> > > one locally and had a very difficult time finding one. I was

able to

> > > find at least one but it may be difficult to get in and have

it paid

> > > for by insurance. Comes under the category of " vision

therapy " and

> > > may be difficult to fund. It may be worthwhile to go once

or twice,

> > > pay out of pocket, and at least try and learn some of the

exercises.

> > > is doing well otherwise with his implant; learning

to talk

> > > and sign. Using about 50 words spontaneously a day and has

learned

> > > about 400 words/signs in the last few months but it is so

much

> > > work!!! Thanks for asking..hope your doing well. Rose

> > >

> > >

> > >

> > > 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@c... or visit

> > > the CHARGE Syndrome Foundation web page

> > > at http://www.chargesyndrome.org

> > > 6th International CHARGE Syndrome Conference, Cleveland,

Ohio,

> > > July 25-27, 2003. Information will be available at our

website

> > > www.chargesyndrome.org or by calling 1-.

> > >

> > >

> > >

[Guest guest]

,

Are you talking about something like early intervention, that is

funded by the state, Britt has that and someone comes in like

therapy and works with her once a week on her over all development.

We can get feeder seats and a we have a corner chair, we love the

corner chair--she loves to set in the chair and watch cartoons. I

did not know they had toys that you can use too. If it is like early

intervention. Thanks for that info. Tina Deskins

mom to Cody 2y, Brittney 1y CHARgE,

and wife to .

> > Aubrie loves Barney most, but also likes many other characters.

> She loves

> > the computer. It's not her lack of interest holding us back --

> it's my lack

> > of drive. I just haven't taken the time to work on with her.

We

> are

> > fortunate to belong to a toy/computer lending program here so

> we've got

> > several children's programs on loan rather than having to

purchase

> them. We

> > also have an intelli-keys that I planned on working on but

didn't

> get to.

> >

> > Now that I'm thinking about it, I should spend some time each

day

> for the

> > next week or so until her IEP meeting. We will be discussing

> technology.

> > I'd be great if I could prove her skill level by then.

> >

> > Michele

> > (unknown)

> > >

> > >

> > > > Hi ,

> > > > We go to Children's. is on schedule for eye

> surgery. Outpt -

> > > > strabismus. We see Dr. Greg. I have talked with the

family

> you

> > > > mentioned but never met them. I also checked into the

> orthoptist

> > > > that several people mentioned on the list. It seems

that an

> > > > orthoptist is to a pediatric opthomalogist what a

> chiropracter is to

> > > > a neurosurgeon. Not to say that we won't pursue this

also,

> it just

> > > > seems that they don't work together much. I called for a

> referral to

> > > > one locally and had a very difficult time finding one. I

was

> able to

> > > > find at least one but it may be difficult to get in and

have

> it paid

> > > > for by insurance. Comes under the category of " vision

> therapy " and

> > > > may be difficult to fund. It may be worthwhile to go

once

> or twice,

> > > > pay out of pocket, and at least try and learn some of the

> exercises.

> > > > is doing well otherwise with his implant;

learning

> to talk

> > > > and sign. Using about 50 words spontaneously a day and

has

> learned

> > > > about 400 words/signs in the last few months but it is so

> much

> > > > work!!! Thanks for asking..hope your doing well. Rose

> > > >

> > > >

> > > >

> > > > 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@c... or visit

> > > > the CHARGE Syndrome Foundation web page

> > > > at http://www.chargesyndrome.org

> > > > 6th International CHARGE Syndrome Conference, Cleveland,

> Ohio,

> > > > July 25-27, 2003. Information will be available at our

> website

> > > > www.chargesyndrome.org or by calling 1-.

> > > >

> > > >

> > > >

[Guest guest]

,

Are you talking about something like early intervention, that is

funded by the state, Britt has that and someone comes in like

therapy and works with her once a week on her over all development.

We can get feeder seats and a we have a corner chair, we love the

corner chair--she loves to set in the chair and watch cartoons. I

did not know they had toys that you can use too. If it is like early

intervention. Thanks for that info. Tina Deskins

mom to Cody 2y, Brittney 1y CHARgE,

and wife to .

> > Aubrie loves Barney most, but also likes many other characters.

> She loves

> > the computer. It's not her lack of interest holding us back --

> it's my lack

> > of drive. I just haven't taken the time to work on with her.

We

> are

> > fortunate to belong to a toy/computer lending program here so

> we've got

> > several children's programs on loan rather than having to

purchase

> them. We

> > also have an intelli-keys that I planned on working on but

didn't

> get to.

> >

> > Now that I'm thinking about it, I should spend some time each

day

> for the

> > next week or so until her IEP meeting. We will be discussing

> technology.

> > I'd be great if I could prove her skill level by then.

> >

> > Michele

> > (unknown)

> > >

> > >

> > > > Hi ,

> > > > We go to Children's. is on schedule for eye

> surgery. Outpt -

> > > > strabismus. We see Dr. Greg. I have talked with the

family

> you

> > > > mentioned but never met them. I also checked into the

> orthoptist

> > > > that several people mentioned on the list. It seems

that an

> > > > orthoptist is to a pediatric opthomalogist what a

> chiropracter is to

> > > > a neurosurgeon. Not to say that we won't pursue this

also,

> it just

> > > > seems that they don't work together much. I called for a

> referral to

> > > > one locally and had a very difficult time finding one. I

was

> able to

> > > > find at least one but it may be difficult to get in and

have

> it paid

> > > > for by insurance. Comes under the category of " vision

> therapy " and

> > > > may be difficult to fund. It may be worthwhile to go

once

> or twice,

> > > > pay out of pocket, and at least try and learn some of the

> exercises.

> > > > is doing well otherwise with his implant;

learning

> to talk

> > > > and sign. Using about 50 words spontaneously a day and

has

> learned

> > > > about 400 words/signs in the last few months but it is so

> much

> > > > work!!! Thanks for asking..hope your doing well. Rose

> > > >

> > > >

> > > >

> > > > 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@c... or visit

> > > > the CHARGE Syndrome Foundation web page

> > > > at http://www.chargesyndrome.org

> > > > 6th International CHARGE Syndrome Conference, Cleveland,

> Ohio,

> > > > July 25-27, 2003. Information will be available at our

> website

> > > > www.chargesyndrome.org or by calling 1-.

> > > >

> > > >

> > > >

[Guest guest]

,

Are you talking about something like early intervention, that is

funded by the state, Britt has that and someone comes in like

therapy and works with her once a week on her over all development.

We can get feeder seats and a we have a corner chair, we love the

corner chair--she loves to set in the chair and watch cartoons. I

did not know they had toys that you can use too. If it is like early

intervention. Thanks for that info. Tina Deskins

mom to Cody 2y, Brittney 1y CHARgE,

and wife to .

> > Aubrie loves Barney most, but also likes many other characters.

> She loves

> > the computer. It's not her lack of interest holding us back --

> it's my lack

> > of drive. I just haven't taken the time to work on with her.

We

> are

> > fortunate to belong to a toy/computer lending program here so

> we've got

> > several children's programs on loan rather than having to

purchase

> them. We

> > also have an intelli-keys that I planned on working on but

didn't

> get to.

> >

> > Now that I'm thinking about it, I should spend some time each

day

> for the

> > next week or so until her IEP meeting. We will be discussing

> technology.

> > I'd be great if I could prove her skill level by then.

> >

> > Michele

> > (unknown)

> > >

> > >

> > > > Hi ,

> > > > We go to Children's. is on schedule for eye

> surgery. Outpt -

> > > > strabismus. We see Dr. Greg. I have talked with the

family

> you

> > > > mentioned but never met them. I also checked into the

> orthoptist

> > > > that several people mentioned on the list. It seems

that an

> > > > orthoptist is to a pediatric opthomalogist what a

> chiropracter is to

> > > > a neurosurgeon. Not to say that we won't pursue this

also,

> it just

> > > > seems that they don't work together much. I called for a

> referral to

> > > > one locally and had a very difficult time finding one. I

was

> able to

> > > > find at least one but it may be difficult to get in and

have

> it paid

> > > > for by insurance. Comes under the category of " vision

> therapy " and

> > > > may be difficult to fund. It may be worthwhile to go

once

> or twice,

> > > > pay out of pocket, and at least try and learn some of the

> exercises.

> > > > is doing well otherwise with his implant;

learning

> to talk

> > > > and sign. Using about 50 words spontaneously a day and

has

> learned

> > > > about 400 words/signs in the last few months but it is so

> much

> > > > work!!! Thanks for asking..hope your doing well. Rose

> > > >

> > > >

> > > >

> > > > 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@c... or visit

> > > > the CHARGE Syndrome Foundation web page

> > > > at http://www.chargesyndrome.org

> > > > 6th International CHARGE Syndrome Conference, Cleveland,

> Ohio,

> > > > July 25-27, 2003. Information will be available at our

> website

> > > > www.chargesyndrome.org or by calling 1-.

> > > >

> > > >

> > > >

[Guest guest]

Yes, that is what I'm talking about. They have -- I guess for a lack of a

better word -- early intervention equipment to help in getting the child

motivated to sit up, crawl, etc. The place we have has some of the things

you spoke about. For instance we borrowed a light box until the state paid

for one for Jillyan. They have some tumble form equipment to assist with

mobility and things like that. They don't necessarily have regular every

day " toys " that you get at the department stores,. Everything they have has

a purpose in mind. I can say, however, they we have picked up some great

toys at Wal-Mart -- the Leap Frog ones. Jillyan loves anything that lights

up and makes noise and the Discover Ball is her favorite. We now have

removed it from the base and she has to roll around to retrieve it.

I know that in NC Assistive Technology (through the state) pays for

equipment for special needs kids and when parents are through with that

equipment they normally donate it back to the therapist who got it for them,

which is what we plan to do with our feeder seat, light box and Benik

est -- of course we are not through with all that stuff yet! Jillyan got

to try out a Benik vest prior to our getting one to make sure she would

tolerate it. The one our PT had was a tiny bit too small for our chubby one

so we had to get another custom one made. The first one was purchased for a

Downs child with weak muscle tone and he was a little one.

Anyway, hope that helps. Ask your therapist about any lending programs they

may be aware of or if they have anything in their office that might be of

use to you. Jilly's play therapist will leave a toy with us that she enjoys

playing with and then we'll give it back for another when she tires of it.

Don't hesitate to ask your early intervention people as that is what they

are for.

Huggins

Wife to Robin, Mom to Jillyan (15 months) and Hailey (5)

Re: (unknown)

,

Are you talking about something like early intervention, that is

funded by the state, Britt has that and someone comes in like

therapy and works with her once a week on her over all development.

We can get feeder seats and a we have a corner chair, we love the

corner chair--she loves to set in the chair and watch cartoons. I

did not know they had toys that you can use too. If it is like early

intervention. Thanks for that info. Tina Deskins

mom to Cody 2y, Brittney 1y CHARgE,

and wife to .

> > Aubrie loves Barney most, but also likes many other characters.

> She loves

> > the computer. It's not her lack of interest holding us back --

> it's my lack

> > of drive. I just haven't taken the time to work on with her.

We

> are

> > fortunate to belong to a toy/computer lending program here so

> we've got

> > several children's programs on loan rather than having to

purchase

> them. We

> > also have an intelli-keys that I planned on working on but

didn't

> get to.

> >

> > Now that I'm thinking about it, I should spend some time each

day

> for the

> > next week or so until her IEP meeting. We will be discussing

> technology.

> > I'd be great if I could prove her skill level by then.

> >

> > Michele

> > (unknown)

> > >

> > >

> > > > Hi ,

> > > > We go to Children's. is on schedule for eye

> surgery. Outpt -

> > > > strabismus. We see Dr. Greg. I have talked with the

family

> you

> > > > mentioned but never met them. I also checked into the

> orthoptist

> > > > that several people mentioned on the list. It seems

that an

> > > > orthoptist is to a pediatric opthomalogist what a

> chiropracter is to

> > > > a neurosurgeon. Not to say that we won't pursue this

also,

> it just

> > > > seems that they don't work together much. I called for a

> referral to

> > > > one locally and had a very difficult time finding one. I

was

> able to

> > > > find at least one but it may be difficult to get in and

have

> it paid

> > > > for by insurance. Comes under the category of " vision

> therapy " and

> > > > may be difficult to fund. It may be worthwhile to go

once

> or twice,

> > > > pay out of pocket, and at least try and learn some of the

> exercises.

> > > > is doing well otherwise with his implant;

learning

> to talk

> > > > and sign. Using about 50 words spontaneously a day and

has

> learned

> > > > about 400 words/signs in the last few months but it is so

> much

> > > > work!!! Thanks for asking..hope your doing well. Rose

> > > >

> > > >

> > > >

> > > > 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@c... or visit

> > > > the CHARGE Syndrome Foundation web page

> > > > at http://www.chargesyndrome.org

> > > > 6th International CHARGE Syndrome Conference, Cleveland,

> Ohio,

> > > > July 25-27, 2003. Information will be available at our

> website

> > > > www.chargesyndrome.org or by calling 1-.

> > > >

> > > >

> > > >

[Guest guest]

Yes, that is what I'm talking about. They have -- I guess for a lack of a

better word -- early intervention equipment to help in getting the child

motivated to sit up, crawl, etc. The place we have has some of the things

you spoke about. For instance we borrowed a light box until the state paid

for one for Jillyan. They have some tumble form equipment to assist with

mobility and things like that. They don't necessarily have regular every

day " toys " that you get at the department stores,. Everything they have has

a purpose in mind. I can say, however, they we have picked up some great

toys at Wal-Mart -- the Leap Frog ones. Jillyan loves anything that lights

up and makes noise and the Discover Ball is her favorite. We now have

removed it from the base and she has to roll around to retrieve it.

I know that in NC Assistive Technology (through the state) pays for

equipment for special needs kids and when parents are through with that

equipment they normally donate it back to the therapist who got it for them,

which is what we plan to do with our feeder seat, light box and Benik

est -- of course we are not through with all that stuff yet! Jillyan got

to try out a Benik vest prior to our getting one to make sure she would

tolerate it. The one our PT had was a tiny bit too small for our chubby one

so we had to get another custom one made. The first one was purchased for a

Downs child with weak muscle tone and he was a little one.

Anyway, hope that helps. Ask your therapist about any lending programs they

may be aware of or if they have anything in their office that might be of

use to you. Jilly's play therapist will leave a toy with us that she enjoys

playing with and then we'll give it back for another when she tires of it.

Don't hesitate to ask your early intervention people as that is what they

are for.

Huggins

Wife to Robin, Mom to Jillyan (15 months) and Hailey (5)

Re: (unknown)

,

Are you talking about something like early intervention, that is

funded by the state, Britt has that and someone comes in like

therapy and works with her once a week on her over all development.

We can get feeder seats and a we have a corner chair, we love the

corner chair--she loves to set in the chair and watch cartoons. I

did not know they had toys that you can use too. If it is like early

intervention. Thanks for that info. Tina Deskins

mom to Cody 2y, Brittney 1y CHARgE,

and wife to .

> > Aubrie loves Barney most, but also likes many other characters.

> She loves

> > the computer. It's not her lack of interest holding us back --

> it's my lack

> > of drive. I just haven't taken the time to work on with her.

We

> are

> > fortunate to belong to a toy/computer lending program here so

> we've got

> > several children's programs on loan rather than having to

purchase

> them. We

> > also have an intelli-keys that I planned on working on but

didn't

> get to.

> >

> > Now that I'm thinking about it, I should spend some time each

day

> for the

> > next week or so until her IEP meeting. We will be discussing

> technology.

> > I'd be great if I could prove her skill level by then.

> >

> > Michele

> > (unknown)

> > >

> > >

> > > > Hi ,

> > > > We go to Children's. is on schedule for eye

> surgery. Outpt -

> > > > strabismus. We see Dr. Greg. I have talked with the

family

> you

> > > > mentioned but never met them. I also checked into the

> orthoptist

> > > > that several people mentioned on the list. It seems

that an

> > > > orthoptist is to a pediatric opthomalogist what a

> chiropracter is to

> > > > a neurosurgeon. Not to say that we won't pursue this

also,

> it just

> > > > seems that they don't work together much. I called for a

> referral to

> > > > one locally and had a very difficult time finding one. I

was

> able to

> > > > find at least one but it may be difficult to get in and

have

> it paid

> > > > for by insurance. Comes under the category of " vision

> therapy " and

> > > > may be difficult to fund. It may be worthwhile to go

once

> or twice,

> > > > pay out of pocket, and at least try and learn some of the

> exercises.

> > > > is doing well otherwise with his implant;

learning

> to talk

> > > > and sign. Using about 50 words spontaneously a day and

has

> learned

> > > > about 400 words/signs in the last few months but it is so

> much

> > > > work!!! Thanks for asking..hope your doing well. Rose

> > > >

> > > >

> > > >

> > > > 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@c... or visit

> > > > the CHARGE Syndrome Foundation web page

> > > > at http://www.chargesyndrome.org

> > > > 6th International CHARGE Syndrome Conference, Cleveland,

> Ohio,

> > > > July 25-27, 2003. Information will be available at our

> website

> > > > www.chargesyndrome.org or by calling 1-.

> > > >

> > > >

> > > >

[Guest guest]

Yes, that is what I'm talking about. They have -- I guess for a lack of a

better word -- early intervention equipment to help in getting the child

motivated to sit up, crawl, etc. The place we have has some of the things

you spoke about. For instance we borrowed a light box until the state paid

for one for Jillyan. They have some tumble form equipment to assist with

mobility and things like that. They don't necessarily have regular every

day " toys " that you get at the department stores,. Everything they have has

a purpose in mind. I can say, however, they we have picked up some great

toys at Wal-Mart -- the Leap Frog ones. Jillyan loves anything that lights

up and makes noise and the Discover Ball is her favorite. We now have

removed it from the base and she has to roll around to retrieve it.

I know that in NC Assistive Technology (through the state) pays for

equipment for special needs kids and when parents are through with that

equipment they normally donate it back to the therapist who got it for them,

which is what we plan to do with our feeder seat, light box and Benik

est -- of course we are not through with all that stuff yet! Jillyan got

to try out a Benik vest prior to our getting one to make sure she would

tolerate it. The one our PT had was a tiny bit too small for our chubby one

so we had to get another custom one made. The first one was purchased for a

Downs child with weak muscle tone and he was a little one.

Anyway, hope that helps. Ask your therapist about any lending programs they

may be aware of or if they have anything in their office that might be of

use to you. Jilly's play therapist will leave a toy with us that she enjoys

playing with and then we'll give it back for another when she tires of it.

Don't hesitate to ask your early intervention people as that is what they

are for.

Huggins

Wife to Robin, Mom to Jillyan (15 months) and Hailey (5)

Re: (unknown)

,

Are you talking about something like early intervention, that is

funded by the state, Britt has that and someone comes in like

therapy and works with her once a week on her over all development.

We can get feeder seats and a we have a corner chair, we love the

corner chair--she loves to set in the chair and watch cartoons. I

did not know they had toys that you can use too. If it is like early

intervention. Thanks for that info. Tina Deskins

mom to Cody 2y, Brittney 1y CHARgE,

and wife to .

> > Aubrie loves Barney most, but also likes many other characters.

> She loves

> > the computer. It's not her lack of interest holding us back --

> it's my lack

> > of drive. I just haven't taken the time to work on with her.

We

> are

> > fortunate to belong to a toy/computer lending program here so

> we've got

> > several children's programs on loan rather than having to

purchase

> them. We

> > also have an intelli-keys that I planned on working on but

didn't

> get to.

> >

> > Now that I'm thinking about it, I should spend some time each

day

> for the

> > next week or so until her IEP meeting. We will be discussing

> technology.

> > I'd be great if I could prove her skill level by then.

> >

> > Michele

> > (unknown)

> > >

> > >

> > > > Hi ,

> > > > We go to Children's. is on schedule for eye

> surgery. Outpt -

> > > > strabismus. We see Dr. Greg. I have talked with the

family

> you

> > > > mentioned but never met them. I also checked into the

> orthoptist

> > > > that several people mentioned on the list. It seems

that an

> > > > orthoptist is to a pediatric opthomalogist what a

> chiropracter is to

> > > > a neurosurgeon. Not to say that we won't pursue this

also,

> it just

> > > > seems that they don't work together much. I called for a

> referral to

> > > > one locally and had a very difficult time finding one. I

was

> able to

> > > > find at least one but it may be difficult to get in and

have

> it paid

> > > > for by insurance. Comes under the category of " vision

> therapy " and

> > > > may be difficult to fund. It may be worthwhile to go

once

> or twice,

> > > > pay out of pocket, and at least try and learn some of the

> exercises.

> > > > is doing well otherwise with his implant;

learning

> to talk

> > > > and sign. Using about 50 words spontaneously a day and

has

> learned

> > > > about 400 words/signs in the last few months but it is so

> much

> > > > work!!! Thanks for asking..hope your doing well. Rose

> > > >

> > > >

> > > >

> > > > 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@c... or visit

> > > > the CHARGE Syndrome Foundation web page

> > > > at http://www.chargesyndrome.org

> > > > 6th International CHARGE Syndrome Conference, Cleveland,

> Ohio,

> > > > July 25-27, 2003. Information will be available at our

> website

> > > > www.chargesyndrome.org or by calling 1-.

> > > >

> > > >

> > > >

[Guest guest]

,

Are you in Irredell County? I live in Winston-Salem. E-mail me privately.

I'd love to chat about things. Do you come to Baptist for your health care.

My husband works in Pediactrics at Baptist.

Our e-mail is jddungetheim749@...

[Guest guest]

,

Are you in Irredell County? I live in Winston-Salem. E-mail me privately.

I'd love to chat about things. Do you come to Baptist for your health care.

My husband works in Pediactrics at Baptist.

Our e-mail is jddungetheim749@...

[Guest guest]

,

Are you in Irredell County? I live in Winston-Salem. E-mail me privately.

I'd love to chat about things. Do you come to Baptist for your health care.

My husband works in Pediactrics at Baptist.

Our e-mail is jddungetheim749@...

[Guest guest]

Bren,

First off....

..........YUMMMMMMMY. At least you have GREAT taste in cheats. *big silly

grin*

Second, GOOD JOB not hiding and for asking for help. That is a great step

in the right direction. It's so easy to just fade away but then without

support and accountability you just get discouraged and do worse. You

know....the " tomorrow " plan where every day you say " one more day of being

bad and then TOMORROW I'll start over. " So I applaud you. You're among

friends who've been in your shoes bunches of times. Kick your cute little

butt and behave tomorrow K? Be good to yourself some other way. Think

bubble bath and glass of wine or something. Just stop the insanity.

And congratulate yourself for doing the right thing today and asking for help

and accountability. I'll need the same boot in the butt sometime in the

future, so you may save this post and send it back to me then.

Warmly,

Jo

[Guest guest]

I know what you mean Di, I hate exercise too. I like water and I drink it but my

gosh, I dont like to drink as much as everyone says we should, so i just try to

drink as much as i can. i just dont like to have a stomach full of water, it

makes it hurt and makes me go pee too much! lol I dont like to have to go to the

bathroom all day. lol

Tina

(unknown)

Hi everybody~

Thank you for the warm welcome! Well It's been six days and I've lost

seven pounds (probably water) but it's a start. I still hate

exercise, but I WILL keep doing it....the water thing is going to be

difficult. I'm not sure which I dislike more, water or

exercise....lol..why is the bad things in life are whats good for you

and the things that " I " consider good are bad.....life is very

confusing.....oh well...good luck to everyone this week. Oh ya, one

question. How do you weigh in? Do we post it somewhere or is it just

for ourselves??

talk to ya soon....di

[Guest guest]

Hi di,

> Thank you for the warm welcome! Well It's been six days and I've lost

> seven pounds (probably water) but it's a start. I still hate

> exercise, but I WILL keep doing it....the water thing is going to be

> difficult. I'm not sure which I dislike more, water or

> exercise....lol..

I don't do the water thing. I just don't.

I drink when I am thirsty. But I do exercise. I also drink plenty of water

when I exercise-- because I get thirsty.

I'm a big exercise advocate.

Lucia

--

lucia@...

Lisle, Illinois

[Guest guest]

,

Good for you! Great work! keep it up. It is paying off.

Gena :-)

On Wednesday, November 20, 2002, at 01:15 PM, jennifer wrote:

> went to the gym today, and had a great workout.  upped the weights on

> the leg machine, and have been so excited that my shoulders, back,

> arms, and legs are so muscular and hard.  my abs are yet the only

> thing i'm still working, and the only thing i really really want to

> lose, it's getting better though.  i will do some walking tomorrow. 

> and maybe some video.  got to go back to work.

>

>

>

[Guest guest]

Ang,

I have had the same thing happening. People swear it looks like I lost

more weight, even my chiropractor. He says it is redistributing,

shifting things. It is something that naturally happens after losing

weight and exercise helps. The plateau is your body adjusting to it's

new composition. It isn't a bad thing! Just keep doing what you are,

maybe try shaking up your exercise a bit. You have done so great! 60

pounds is a huge amount! That is when I hit my first slow down. Just

don't start slacking like I did. We can do this! How much more do you

want to lose? I think atleast 30 more, maybe 40. Eventually 50 but I

think that will have to wait until I have the tummy tuck. I'm figuring

atleast 2 years.

Gena

> Ok - now I've been dieting for years and pretty much know what's

> going on.  But I've gotten to a point in which I am truely baffled as

> to why and what is happening.

> For 18 months I lost consistantly - a total of almost 60 pounds.  Now

> for the last month (closer to 2 months) the wieght is staying the

> same (the longest platue yet).   That - I am not so worried about or

> baffled over. 

> Here's the thing I'd like to get everyones ideas and thoughts on...

> During this stable time, my body is changing.  My measurements are

> getting all out of wack.  In a good way for the most part...but it's

> as if the fat is no longer moving off - but instead re-distributing

> evenly.  Does that make sence?

> Does anyone know what is happening or why?  In all the years I've

> dieted I've never stuck to it this long or lost this much.  So this

> could be a normal thing I'm not aware of.

> Thanks,

> Ang

>

>

<image.tiff>

>

>

>

[Guest guest]

Oh Crys, you are so so nice!! Much nicer than I am !!

LOL!!

Semalee

For unto us this day a child is born.....

-- Re: (unknown)

In a message dated 1/4/2003 1:49:13 PM Eastern Standard Time,

SteigGirl2@... writes:

> Oh, this is a GREAT idea!! I have got to do it, just get a laugh!!

>

Another idea is to buy him his own bottle and fill it when you fill yours.

Make it a cool one - maybe with is favorite sports team or whatever. Be

sure

you keep his filled. After a while, he'll be as posessive as you are <g>.

-Crys-

(Lifetimer since August 1995)

WW to date: 178.6/ 140.2 / 140 (-38.4)

Weight in 2003: 139.6 / 140.2 / 130 (+0.6)

Well, the day has just begun and I'm already running late.

With too many Irons in the fire and too much on my plate.

I'd be pulling out my hair if I could just get one had free,

And I'd stop the world if I could find the key!

What I see is telling me the worlds gone crazy.

But what is real says God's still on his throne.

What I need is to remember one thing:

That the Lord of the gentle breeze is Lord of the rough and tumble.

And He is the King of the jungle!

- Curtis Chapman-

[Guest guest]

Isn't that a wonderful feeling, Bev? This year was the first year in

forever that I have not made the New Year's Resolution to lose weight!

It feels great to BE healthy instead of thinking I should do something

to GET healthy.

(unknown)

I've been home since Thursday, my 9 yr. old is sick, and we got iced- in

on Friday. can you say BORED????

I had my WI today. I lost 1.4

BUT, I have had some free time on my hands & I usually try to take

some time out to actually think.

LOL

Im really enjoying the WW program.

I've been on it since Oct 22 2002, and sometimes I think the best

thing about WW is being able to think to myself " Im doing this for

me, its working, Im not stressed, and Im finally starting to feel

good about ME "

I used to see the " diet " commercials, or exercise commercials on TV

and just watch and think " gee, I wish I could get motivated and do

something about this weight " and then go in the kitchen & make a

snack, LOL.

Now when I see them, I get to think, " hey Im already doing something,

and its really working! "

Bev

[Guest guest]

In a message dated 2/4/2003 5:58:34 PM Pacific Standard Time, bevsuebb@...

writes:

> I had my WI today. I lost 1.4

Congrats Bev )!!!!!!!!

Gymmie in Cali )!!!!!!!!!

" One day at a time, no guilt and move on " Dotti

Today is " Monday "

Breaking Free in 2K3

Week of 2/2 Goals

Wednesday Abs Challenge

128 oz. Water

Weights

241.6/155.5/140

[Guest guest]

> Isn't that a wonderful feeling, Bev? This year was the first year in

> forever that I have not made the New Year's Resolution to lose

weight!

> It feels great to BE healthy instead of thinking I should do

something

> to GET healthy.

>

YEP, Tory, its fantastic!!

Have you been able to get more in with your workouts?

Everyone at my work has been asking about you Even those not on

WW! We all find your website so inspiring. Its really nice to find

such uplifting stuff on the net.

Bev