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Michele

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Kim -

Thanks for keeping us in your thoughts. Aubrie's doing great. She

finally had a bm today -- yippee! Her appetite leaves a bit to be

desired and I think her arms are already skinnier. I'm worried about

the little bird she'll be when she's through with this. I had thought

of skinny legs, but hadn't realized how much this would impact her whole

body.

She has to spend time on her tummy every day -- which she hates as much

as she did as an infant. We put her on the huge bean bag for tummy

time. It's good for strengthening her upper body, but her shoulders pop

out. So how do I balance the need for upper body exercise and the need

to protect her shoulders?

We bought her some dresses and skirts today so she'll have something to

wear to school. We put a few snaps at the hem to keep the dress closed

at her bottom. She's a bit concerned about the kids teasing her for

wearing diapers. But the neighbor girl who is in her class and knows

all our secrets cuz she's here all the time said, " oh, but everybody

likes Aubrie! "

Gotta run-- thanks again for your thoughts-

Michele W

Aubrie's mom 6 yrs

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Michele,

Glad Aubrie is doing well. Remembering back years ago I can identify with

your yippee below. I also remember how skinny used to get. I wish I had

magic answers but I don't. Hem snaps are a great idea. What about a bloomer

type thing or shorts under her skirt? When will she start school?

Prayers, Blessings and Hugs,

Lynn

Re: Michele

Kim -

Thanks for keeping us in your thoughts. Aubrie's doing great. She

finally had a bm today -- yippee! Her appetite leaves a bit to be

desired and I think her arms are already skinnier. I'm worried about

the little bird she'll be when she's through with this. I had thought

of skinny legs, but hadn't realized how much this would impact her whole

body.

She has to spend time on her tummy every day -- which she hates as much

as she did as an infant. We put her on the huge bean bag for tummy

time. It's good for strengthening her upper body, but her shoulders pop

out. So how do I balance the need for upper body exercise and the need

to protect her shoulders?

We bought her some dresses and skirts today so she'll have something to

wear to school. We put a few snaps at the hem to keep the dress closed

at her bottom. She's a bit concerned about the kids teasing her for

wearing diapers. But the neighbor girl who is in her class and knows

all our secrets cuz she's here all the time said, " oh, but everybody

likes Aubrie! "

Gotta run-- thanks again for your thoughts-

Michele W

Aubrie's mom 6 yrs

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!

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Michele,

Glad Aubrie is doing well. Remembering back years ago I can identify with

your yippee below. I also remember how skinny used to get. I wish I had

magic answers but I don't. Hem snaps are a great idea. What about a bloomer

type thing or shorts under her skirt? When will she start school?

Prayers, Blessings and Hugs,

Lynn

Re: Michele

Kim -

Thanks for keeping us in your thoughts. Aubrie's doing great. She

finally had a bm today -- yippee! Her appetite leaves a bit to be

desired and I think her arms are already skinnier. I'm worried about

the little bird she'll be when she's through with this. I had thought

of skinny legs, but hadn't realized how much this would impact her whole

body.

She has to spend time on her tummy every day -- which she hates as much

as she did as an infant. We put her on the huge bean bag for tummy

time. It's good for strengthening her upper body, but her shoulders pop

out. So how do I balance the need for upper body exercise and the need

to protect her shoulders?

We bought her some dresses and skirts today so she'll have something to

wear to school. We put a few snaps at the hem to keep the dress closed

at her bottom. She's a bit concerned about the kids teasing her for

wearing diapers. But the neighbor girl who is in her class and knows

all our secrets cuz she's here all the time said, " oh, but everybody

likes Aubrie! "

Gotta run-- thanks again for your thoughts-

Michele W

Aubrie's mom 6 yrs

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!

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Share on other sites

Michele,

Glad Aubrie is doing well. Remembering back years ago I can identify with

your yippee below. I also remember how skinny used to get. I wish I had

magic answers but I don't. Hem snaps are a great idea. What about a bloomer

type thing or shorts under her skirt? When will she start school?

Prayers, Blessings and Hugs,

Lynn

Re: Michele

Kim -

Thanks for keeping us in your thoughts. Aubrie's doing great. She

finally had a bm today -- yippee! Her appetite leaves a bit to be

desired and I think her arms are already skinnier. I'm worried about

the little bird she'll be when she's through with this. I had thought

of skinny legs, but hadn't realized how much this would impact her whole

body.

She has to spend time on her tummy every day -- which she hates as much

as she did as an infant. We put her on the huge bean bag for tummy

time. It's good for strengthening her upper body, but her shoulders pop

out. So how do I balance the need for upper body exercise and the need

to protect her shoulders?

We bought her some dresses and skirts today so she'll have something to

wear to school. We put a few snaps at the hem to keep the dress closed

at her bottom. She's a bit concerned about the kids teasing her for

wearing diapers. But the neighbor girl who is in her class and knows

all our secrets cuz she's here all the time said, " oh, but everybody

likes Aubrie! "

Gotta run-- thanks again for your thoughts-

Michele W

Aubrie's mom 6 yrs

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!

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Lynn-

The problem with bloomers or shorts is that they have to fit over her

spread apart legs. Only DJ's XL stretched out elastic waist boxers fit

over that. Or else we could split them and put snaps in the crotch or

velcro on the side seams. This seemed like the easiest route -- with

the skirts and snaps.

I think school starts in 2 weeks. Aubrie is so excited and ready. Now

that I think of it, I guess I'd better call her principal, aid, and

teacher and let them know that she'll be coming!

Michele w

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Lynn-

The problem with bloomers or shorts is that they have to fit over her

spread apart legs. Only DJ's XL stretched out elastic waist boxers fit

over that. Or else we could split them and put snaps in the crotch or

velcro on the side seams. This seemed like the easiest route -- with

the skirts and snaps.

I think school starts in 2 weeks. Aubrie is so excited and ready. Now

that I think of it, I guess I'd better call her principal, aid, and

teacher and let them know that she'll be coming!

Michele w

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Lynn-

The problem with bloomers or shorts is that they have to fit over her

spread apart legs. Only DJ's XL stretched out elastic waist boxers fit

over that. Or else we could split them and put snaps in the crotch or

velcro on the side seams. This seemed like the easiest route -- with

the skirts and snaps.

I think school starts in 2 weeks. Aubrie is so excited and ready. Now

that I think of it, I guess I'd better call her principal, aid, and

teacher and let them know that she'll be coming!

Michele w

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