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,

I think it might be part of the exploration process. Austin did that too.

It was like he figured out that something was there and wanted to try and

figure out what it was. I worried at first but let him check it out with me

close by in case he pulled too hard. Now he knows not to pull it too hard

but he still likes to look at it and open the port. His little sister is

pretty scary around the tube feeding stuff though. She's got a grip on his

tubing a couple of times and almost pulled it right out!! I don't know if

this helps but at least you know some other kid did it too :)

Jacque

Austin's mom

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,

I can't remember from past postings, but is there a reason you have the bard

button instead of the mic-key? At least with the mic-key, it is anti-reflux

and if she does open the plug, nothing would leak out (unless it is

defective).

Bradley

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Jacque,

I am glad she's not the only one, I actually figured she wasn't the only

one, it only makes sense with something foreign that they are going to want

to explore it. It just makes such a mess all over her clothes, my clothes

if I'm picking her up, and whatever she's sitting on. I know she just wants

to see it, and maybe it's itchy sometimes, I just wish I knew how to keep

that darn thing closed!!! Maybe she'll just get tired of it after a while.

(I hope!!)

Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

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

ICQ #1426476

>From: JClif222@...

>

>,

>

>I think it might be part of the exploration process. Austin did that too.

>It was like he figured out that something was there and wanted to try and

>figure out what it was. I worried at first but let him check it out with

me

>close by in case he pulled too hard. Now he knows not to pull it too hard

>but he still likes to look at it and open the port. His little sister is

>pretty scary around the tube feeding stuff though. She's got a grip on his

>tubing a couple of times and almost pulled it right out!! I don't know if

>this helps but at least you know some other kid did it too :)

>

>Jacque

>Austin's mom

>

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

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,

I'm wondering if you can give Kennedy an old washed feeding tube that she can

play with when she wants to play and open it and such? Do you have an old one

around? It wouldn't solve the problem if she's doing it because she is itchy,

but it could help with the curious part. Kendra loves to find her old tubes

and play with them. We run them through the dishwasher and they are (sort of)

presentable. :-)

wendy

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

Portland, OR

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Hi !

We currently have a Mic-Key button for that does not leak

(think this is a first and soooo nice). Have you tried snap crotch

clothing to limit access or does she pull at it through her clothes?

Maybe you could try to tape the button and tube down to her

tummy and flush well after feeds?

Cheryl, , (5), (3, CHaRGE)

MI

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Graeme & Weir wrote:

>

> Hi everyone,

> I am having a problem with Kennedy that is actually starting to really

> drive me CRAZY!!! I am wondering if you guys have any suggestions.

> Here is the problem: Kennedy is constantly pulling at her button,

> almost to the point of pulling the whole darn thing out, and she hurts

> herself, cries, but continues to do it. I have taped it, (she gets

> the tape off), I have gotten long pieces of velcro to wrap around her,

> she gets it off, and I have tried stretchy gauze wrapped around her

> which she also got off. She is very industrious, I'll give her that.

> She loses a good amount of food as it's always open, even after feeds,

> and it always leaks. The day we got the new one put in, it leaked

> after the first med went in, so I am resigned to the fact that when

> they are open, they leak. Anyway, has anyone else had this problem,

> and if so, what did you do???

> Thanks in advance,

>

> Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme

> New Brunswick, Canada

> Visit the " Weir homepage " at:

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

> ICQ #1426476

Do you think that it is somehow bothering her? Maybe it's to tight

against her skin or rubbing the inside of her stomach uncomfortably.

Jeanie

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,

Did you say what type of button Kennedy has?

My son Tim has the Bard and although he does " fiddle " with it now and then it

does not leak.

I should say, it does not leak normally but will if it is getting old (we

usually only have to replace them ever 18-24 months) or it is getting blocked

by pureed food, yogurt or cereal. When that happens we unblock it using a Q

tip with the end cut off - one of our docs tricks. Sometime, just rotating

the button will also unblock.

The Bard also will not come out ......at least not just by the child pulling

at it. We are told that to do so would be very painful.

Hope the leaking stops. I know how annoying a constant drip is.

Donna

mom to Tim (13) (12) (9) and (5)

Hamilton Sq. NJ

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,

used to play with her button as a baby too. At night we used to put

her in a blanket sleeper, the kind with no feet and put it on backward, we

then used to poke a hole in her sleeper to run the tubing out, this way she

could not " play " with her button and could not unzipper her pjs to take them

off. I know its summer and it may be too hot for this, but it might help in

the fall. also always wore the onesie undershirts and as many one

piece outfits that I could find!

Charlene -

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Jeanie,

I have been wondering the same thing, but I have no idea how we'd find out.

Could just be itchy cause it's a foreign thing shoved in her body.

>Do you think that it is somehow bothering her? Maybe it's to tight

>against her skin or rubbing the inside of her stomach uncomfortably.

>

>Jeanie

>

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

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Bradley,

The BARD is the only one they use at this Children's Hospital. It is

supposed to be anti-reflux as well, but my ped said yesterday when I asked

her that it is probably our fault because we feed her everything through the

tube, not just formula. Baby food (2 jars a day), pablum twice a day, etc.

So, the leak will probably remain. It's worth it to me to get other food

into her system besides formula. I've asked about a MicKey and they just

don't do it here.

Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

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

ICQ #1426476

>From: Bradweis2@...

>

>,

>

>I can't remember from past postings, but is there a reason you have the

bard

>button instead of the mic-key? At least with the mic-key, it is

anti-reflux

>and if she does open the plug, nothing would leak out (unless it is

>defective).

>

>Bradley

>

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

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,

No, I don't have any old buttons. I really don't think this would work as

we have tried EVERYTHING to otherwise occupy her when she is doing this. I

thought maybe she was trying to tell me she was bored and needed some

stimulation, so I tried to give her really " different " things (that she

usually doesn't play with), but it doesn't help. I think she's going to

have to just " get over it " with time, and hopefully the novelty will wear

off.

Thanks for the idea though....I'll file it away for future reference, it

might be a good idea when she gets older and understands more.

Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

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

ICQ #1426476

>

>

>,

>

>I'm wondering if you can give Kennedy an old washed feeding tube that she

can

>play with when she wants to play and open it and such? Do you have an old

one

>around? It wouldn't solve the problem if she's doing it because she is

itchy,

>but it could help with the curious part. Kendra loves to find her old

tubes

>and play with them. We run them through the dishwasher and they are (sort

of)

>presentable. :-)

>

>wendy

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

>Portland, OR

>

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

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Cheryl,

Yes, she can rip at it right through the clothes. I have been taping it

like a mummy at times lately, although I hate doing that as the tape really

breaks her out no matter what kind we use. (we've tried all of em) As for

the flushing, she gets a lot of flush after each syringe, as well as at the

end, like I say, it's probably our fault it leaks as we put food & pablum

through it.

Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

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

ICQ #1426476

Hi !

We currently have a Mic-Key button for that does not leak

(think this is a first and soooo nice). Have you tried snap crotch

clothing to limit access or does she pull at it through her clothes?

Maybe you could try to tape the button and tube down to her

tummy and flush well after feeds?

Cheryl, , (5), (3, CHaRGE)

MI

---------------------------

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Charlene,

This used to work for us, but Kennedy can feel it right through clothing and

find the loop on the end (the other end of where it goes in) and she can

open it right up. This doesn't alarm me too awful bad, it's just a messy

pain. The thing that gets me is her trying to rip it right out of her gut!

But, if she does, she does, it might do the trick! It's not like it's the

end of the world. We'd just have to do the g- tube scene until we went to

the Children's Hospital again, I don't believe they do buttons at our local

hospital.

Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

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

ICQ #1426476

>From: Wipeout518@...

>

>,

> used to play with her button as a baby too. At night we used to put

>her in a blanket sleeper, the kind with no feet and put it on backward, we

>then used to poke a hole in her sleeper to run the tubing out, this way she

>could not " play " with her button and could not unzipper her pjs to take

them

>off. I know its summer and it may be too hot for this, but it might help

in

>the fall. also always wore the onesie undershirts and as many one

>piece outfits that I could find!

>

>Charlene -

>

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

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Donna,

Thanks for the Q tip " tip " ! I will try that and see if it helps the

leakies...:)

Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

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

ICQ #1426476

>From: Leapbaby60@...

>

>,

>

>Did you say what type of button Kennedy has?

>My son Tim has the Bard and although he does " fiddle " with it now and then

it

>does not leak.

>I should say, it does not leak normally but will if it is getting old (we

>usually only have to replace them ever 18-24 months) or it is getting

blocked

>by pureed food, yogurt or cereal. When that happens we unblock it using a Q

>tip with the end cut off - one of our docs tricks. Sometime, just rotating

>the button will also unblock.

>The Bard also will not come out ......at least not just by the child

pulling

>at it. We are told that to do so would be very painful.

>

>Hope the leaking stops. I know how annoying a constant drip is.

>

>Donna

>mom to Tim (13) (12) (9) and (5)

>Hamilton Sq. NJ

>

>

>

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

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Re: Button Problems

>

>

>

> > we have tried EVERYTHING to otherwise occupy her when she is doing this.

I

> thought maybe she was trying to tell me she was bored and needed some

> stimulation, so I tried to give her really " different " things ....

Hi :

I have a ? about this. Is she using this as a " behaviour " to get Mom's

attention?? Is this a way to communicate? ie. I take this button thing

and play around and Mom comes...ie. cause/effect.

Ann

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oh, ok. I didn't realize that the Bard was anti-reflux also. During

Aubrey's surgery, we had the surgeon replace her mic-key with a new one,

because the anti-reflux valve was not working on the other one. I don't know

if it was because we didn't flush it with enough water after each feeding?

We are flushing with more water now to try and help prevent the leaking...I

definitely think you are doing the right thing about giving her other food

thru it.

Bradley

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When we had a bard we would get those leaks. You're probaby doing this, but we

found that if we flushed it out with

some sodapop that reduced the leaks.

Tim Hartshorne

Graeme & Weir wrote:

>

>

> Bradley,

> The BARD is the only one they use at this Children's Hospital. It is

> supposed to be anti-reflux as well, but my ped said yesterday when I asked

> her that it is probably our fault because we feed her everything through the

> tube, not just formula. Baby food (2 jars a day), pablum twice a day, etc.

> So, the leak will probably remain. It's worth it to me to get other food

> into her system besides formula. I've asked about a MicKey and they just

> don't do it here.

>

> Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme

> New Brunswick, Canada

> Visit the " Weir homepage " at:

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

> ICQ #1426476

>

> >From: Bradweis2@...

> >

> >,

> >

> >I can't remember from past postings, but is there a reason you have the

> bard

> >button instead of the mic-key? At least with the mic-key, it is

> anti-reflux

> >and if she does open the plug, nothing would leak out (unless it is

> >defective).

> >

> >Bradley

> >

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

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Great idea! Last year 's pediatrician drew a " button " on one of her

Telletubbies and was giving it her own tube feeding by playing with

an old tube. Cracked us all up, but we also marveled at the fact that she

was playing in this way. It took so long for use to see this type of play

in her.

wife to Jeff, mom to Dan 14, Ali 11, and CHaRGE

At 09:24 AM 8/10/1999 -0600, you wrote:

>

>

>,

>

>I'm wondering if you can give Kennedy an old washed feeding tube that she can

>play with when she wants to play and open it and such? Do you have an old

one

>around? It wouldn't solve the problem if she's doing it because she is

itchy,

>but it could help with the curious part. Kendra loves to find her old tubes

>and play with them. We run them through the dishwasher and they are (sort

of)

>presentable. :-)

>

>wendy

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

>Portland, OR

>

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

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Ann,

I've thought about this, so instead of saying or doing any big thing, I

tried just going over and taking her hand away with no brouhaha and just

leaving and going back to what I was doing. I've even tried to just ignore

her. I'm stymied, I do think there is a reason for this, even if it's just

being a " regular-pain-in-the-butt-cause-I'm-almost-2 " behaviour. I think

it's just going to take preserverance. (What doesn't with CHARGE???!?) :)

Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

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

ICQ #1426476

>Hi :

>I have a ? about this. Is she using this as a " behaviour " to get Mom's

>attention?? Is this a way to communicate? ie. I take this button thing

>and play around and Mom comes...ie. cause/effect.

>Ann

>

>

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

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Tim,

You know, we've never EVER done the pop thing. It kind of scares me to put

pop in her belly. I guess it's worth a try. How much do I put in?

Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

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

ICQ #1426476

>

>

>When we had a bard we would get those leaks. You're probaby doing this,

but we found that if we flushed it out with

>some sodapop that reduced the leaks.

>

>Tim Hartshorne

>

>Graeme & Weir wrote:

>

>>

>>

>> Bradley,

>> The BARD is the only one they use at this Children's Hospital. It is

>> supposed to be anti-reflux as well, but my ped said yesterday when I

asked

>> her that it is probably our fault because we feed her everything through

the

>> tube, not just formula. Baby food (2 jars a day), pablum twice a day,

etc.

>> So, the leak will probably remain. It's worth it to me to get other food

>> into her system besides formula. I've asked about a MicKey and they just

>> don't do it here.

>>

>> Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme

>> New Brunswick, Canada

>> Visit the " Weir homepage " at:

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

>> ICQ #1426476

>>

>> >From: Bradweis2@...

>> >

>> >,

>> >

>> >I can't remember from past postings, but is there a reason you have the

>> bard

>> >button instead of the mic-key? At least with the mic-key, it is

>> anti-reflux

>> >and if she does open the plug, nothing would leak out (unless it is

>> >defective).

>> >

>> >Bradley

>> >

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

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We would only put a small amount in, maybe 20-30 cc's. Another thing we

used to do is to put some air in a small 5 cc syringe and push the air

through the tube. That would clear things out of the button itself so

the value could close.

Tim

Graeme & Weir wrote:

>

>

>

> Tim,

> You know, we've never EVER done the pop thing. It kind of scares me to put

> pop in her belly. I guess it's worth a try. How much do I put in?

>

> Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme

> New Brunswick, Canada

> Visit the " Weir homepage " at:

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

> ICQ #1426476

>

> >

> >

> >When we had a bard we would get those leaks. You're probaby doing this,

> but we found that if we flushed it out with

> >some sodapop that reduced the leaks.

> >

> >Tim Hartshorne

> >

> >Graeme & Weir wrote:

> >

> >>

> >>

> >> Bradley,

> >> The BARD is the only one they use at this Children's Hospital. It is

> >> supposed to be anti-reflux as well, but my ped said yesterday when I

> asked

> >> her that it is probably our fault because we feed her everything through

> the

> >> tube, not just formula. Baby food (2 jars a day), pablum twice a day,

> etc.

> >> So, the leak will probably remain. It's worth it to me to get other food

> >> into her system besides formula. I've asked about a MicKey and they just

> >> don't do it here.

> >>

> >> Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme

> >> New Brunswick, Canada

> >> Visit the " Weir homepage " at:

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

> >> ICQ #1426476

> >>

> >> >From: Bradweis2@...

> >> >

> >> >,

> >> >

> >> >I can't remember from past postings, but is there a reason you have the

> >> bard

> >> >button instead of the mic-key? At least with the mic-key, it is

> >> anti-reflux

> >> >and if she does open the plug, nothing would leak out (unless it is

> >> >defective).

> >> >

> >> >Bradley

> >> >

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

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Tim,

Thanks for the info, I'll have to try that tonight. I'll have to track

Graeme down on his way home from the blueberry field and tell him to get me

some Coke! I've heard Coca-Cola is the best for this kind of thing.

Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

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

ICQ #1426476

>

>

>We would only put a small amount in, maybe 20-30 cc's. Another thing we

>used to do is to put some air in a small 5 cc syringe and push the air

>through the tube. That would clear things out of the button itself so

>the value could close.

>

>Tim

>

>Graeme & Weir wrote:

>>

>>

>>

>> Tim,

>> You know, we've never EVER done the pop thing. It kind of scares me to

put

>> pop in her belly. I guess it's worth a try. How much do I put in?

>>

>> Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme

>> New Brunswick, Canada

>> Visit the " Weir homepage " at:

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

>> ICQ #1426476

>>

>> >

>> >

>> >When we had a bard we would get those leaks. You're probaby doing this,

>> but we found that if we flushed it out with

>> >some sodapop that reduced the leaks.

>> >

>> >Tim Hartshorne

>> >

>> >Graeme & Weir wrote:

>> >

>> >>

>> >>

>> >> Bradley,

>> >> The BARD is the only one they use at this Children's Hospital. It is

>> >> supposed to be anti-reflux as well, but my ped said yesterday when I

>> asked

>> >> her that it is probably our fault because we feed her everything

through

>> the

>> >> tube, not just formula. Baby food (2 jars a day), pablum twice a day,

>> etc.

>> >> So, the leak will probably remain. It's worth it to me to get other

food

>> >> into her system besides formula. I've asked about a MicKey and they

just

>> >> don't do it here.

>> >>

>> >> Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme

>> >> New Brunswick, Canada

>> >> Visit the " Weir homepage " at:

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

>> >> ICQ #1426476

>> >>

>> >> >From: Bradweis2@...

>> >> >

>> >> >,

>> >> >

>> >> >I can't remember from past postings, but is there a reason you have

the

>> >> bard

>> >> >button instead of the mic-key? At least with the mic-key, it is

>> >> anti-reflux

>> >> >and if she does open the plug, nothing would leak out (unless it is

>> >> >defective).

>> >> >

>> >> >Bradley

>> >> >

>> >> >--------------------------- ONElist

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>> >> >

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>> >> >

>> >>

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

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

>> >> >23-25, 1999.

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

>> member

>> >> please contact marion@....

>> >> >

>> >>

>> >> --------------------------- ONElist

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>> >> Check out the FRIENDS & FAMILY program to find out how.

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>>

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

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

>> >> 23-25, 1999.

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

>> member please contact marion@....

>> >

>> >

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

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HI

I've never heard of the " BARD " , Maeve has had a " Mickey " up until Sunday,

when it came out !! She's going to the Doctor tomorrow to replace it. I'm

interested in knowing more about the ANTI-REFLUX part.

Maeve's doing wonderfully.....she got her new glasses today !! now its a game

to try & keep them on. Her NEW hearing aides are already out being repaired,

she chewed a hole in one !! The fun never ends.....

thanks,

LEE

(Maeve's nurse)

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Lee,

Sounds like Maeve's mom and dad are starting in on all the fun stuff. It'll

all come with time - and a LoT of patience!

Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at:

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

ICQ #1426476

>From: Sclee127@...

>

>HI

>I've never heard of the " BARD " , Maeve has had a " Mickey " up until Sunday,

>when it came out !! She's going to the Doctor tomorrow to replace it. I'm

>interested in knowing more about the ANTI-REFLUX part.

>Maeve's doing wonderfully.....she got her new glasses today !! now its a

game

>to try & keep them on. Her NEW hearing aides are already out being

repaired,

>she chewed a hole in one !! The fun never ends.....

>thanks,

>LEE

>(Maeve's nurse)

>

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

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Graeme & Weir wrote:

>

>

>

> Tim,

> You know, we've never EVER done the pop thing. It kind of scares me to put

> pop in her belly. I guess it's worth a try. How much do I put in?

>

> Mom to Kennedy 18 mos old CHARGEr, 10, 8, and wife to Graeme

> New Brunswick, Canada

> Visit the " Weir homepage " at:

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

> ICQ #1426476

>

> >

> >

> >When we had a bard we would get those leaks. You're probaby doing this,

> but we found that if we flushed it out with

> >some sodapop that reduced the leaks.

> >

> >Tim Hartshorne

,

Giacomantoneo told us to flush Mac's tube every so often with Coke to

keep any build up clear. That's what they use at the hospital if someone

comes in with a clogged tube.

Jeanie

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