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If anyone is interested, I just posted a silly video of Kennedy doing a tube

feeding. It's up at www.chargesyndrome.info, or you can watch it direct at

http://video.google.ca/videoplay?docid=-4579744791620198075 & hl=en-CA

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

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OMG that was awsome lol!

I say thats a great milestone to be able to learn to do her own tube

feedings. :D using her forhead instead of her hand, great thought proccess

right there! thats a big seringe and I have had to use that type of saringe

after my jaw opperation. I can relate to how hard it is to push it at times.

She has very good edicit for eating and feeding herself. I realize yah its a

tube, different then fork and knife and spoon but she wiped her saringe off,

did the cleaning, sure you gave her gentle instruction on remembering the

next step, but if you were to look at the care that kennedy did in

comparison to how some 9 year olds eat... I say kennedy showes great manners

and edicit that I wish some 9 year olds I know had lol!

Love

Chantelle

--

http://spacecatsgarden.blogspot.com/ => My blog space

" I let my mind out to wander, and it never came back! " ~ unknown

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So cute. Kennedy is a doll.

a

Weir wrote: If anyone

is interested, I just posted a silly video of Kennedy doing a tube

feeding. It's up at www.chargesyndrome.info, or you can watch it direct at

http://video.google.ca/videoplay?docid=-4579744791620198075 & hl=en-CA

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

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How cute!! She's got some creative problem-solving skills! :-)

Love it!

>

> If anyone is interested, I just posted a silly video of Kennedy

doing a tube

> feeding. It's up at www.chargesyndrome.info, or you can watch it

direct at

> http://video.google.ca/videoplay?docid=-4579744791620198075 & hl=en-

CA

>

>

>

> --

> " It is far better to grasp the universe as it really is than to

persist in

> delusion, however satisfying and reassuring. " --Carl Sagan

>

>

>

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Chantelle, I'm glad you liked it - she is a ham for sure! She does a pretty

great job; I taught her about wiping the end of the syringe before shoving

it in the tube to alleviate the mess and she does everything " by the book " .

Too funny.

>

> OMG that was awsome lol!

>

> I say thats a great milestone to be able to learn to do her own tube

> feedings. :D using her forhead instead of her hand, great thought proccess

> right there! thats a big seringe and I have had to use that type of

> saringe

> after my jaw opperation. I can relate to how hard it is to push it at

> times.

> She has very good edicit for eating and feeding herself. I realize yah its

> a

> tube, different then fork and knife and spoon but she wiped her saringe

> off,

> did the cleaning, sure you gave her gentle instruction on remembering the

> next step, but if you were to look at the care that kennedy did in

> comparison to how some 9 year olds eat... I say kennedy showes great

> manners

> and edicit that I wish some 9 year olds I know had lol!

>

> Love

> Chantelle

>

> --

> http://spacecatsgarden.blogspot.com/ => My blog space

>

> " I let my mind out to wander, and it never came back! " ~ unknown

>

>

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,

It is brilliant silly!! She is so responsible and cute!

I do love that you got ³caught² with the beer can comment :)

pam

>

>

>

>

> If anyone is interested, I just posted a silly video of Kennedy doing a tube

> feeding. It's up at www.chargesyndrome.info, or you can watch it direct at

> http://video.google.ca/videoplay?docid=-4579744791620198075 & hl=en-CA

> <http://video.google.ca/videoplay?docid=-4579744791620198075 & amp;hl=en-CA>

>

>

--

Pamela J. , M.A., CAGS

Licensed Educational Psychologist

Deafblind Program

Perkins School for the Blind

175 N. Beacon St.

Watertown, MA 02472

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I love love loved THAT!! She is so smart and she did a great job,

she sure did do that fast. I love the credits at the end too that

was cute. Kennedy must love watching herslef on video, she wanted to

see it before she was even done....lol.

I can't wait to meet that little girl she is so great!!

Hugs,

Crystal mom to (11), (3), and Eva (22 month old CHARGEr)

wife to Dan in Illinois

>

> If anyone is interested, I just posted a silly video of Kennedy

doing a tube

> feeding. It's up at www.chargesyndrome.info, or you can watch it

direct at

> http://video.google.ca/videoplay?docid=-4579744791620198075 & hl=en-

CA

>

>

>

> --

> " It is far better to grasp the universe as it really is than to

persist in

> delusion, however satisfying and reassuring. " --Carl Sagan

>

>

>

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Yep, one of those times I'm glad she didn't hear EVERYTHING...heh

>

> ,

> It is brilliant silly!! She is so responsible and cute!

> I do love that you got ³caught² with the beer can comment :)

> pam

>

> On 3/8/07 7:22 AM, " Weir " <kawfolks@... <kawfolks%40gmail.com>>

> wrote:

>

> >

> >

> >

> >

> > If anyone is interested, I just posted a silly video of Kennedy doing a

> tube

> > feeding. It's up at www.chargesyndrome.info, or you can watch it direct

> at

> > http://video.google.ca/videoplay?docid=-4579744791620198075 & hl=en-CA

> > <

>

http://video.google.ca/videoplay?docid=-4579744791620198075 & amp;hl=en-CA<http://\

video.google.ca/videoplay?docid=-4579744791620198075 & hl=en-CA>

> >

> >

> >

>

> --

> Pamela J. , M.A., CAGS

> Licensed Educational Psychologist

> Deafblind Program

> Perkins School for the Blind

> 175 N. Beacon St.

> Watertown, MA 02472

>

>

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Crystal, we will see you this summer; I can't wait to meet Eva, too. Her

valentine pic is on my fridge!!!

Lis

>

> I love love loved THAT!! She is so smart and she did a great job,

> she sure did do that fast. I love the credits at the end too that

> was cute. Kennedy must love watching herslef on video, she wanted to

> see it before she was even done....lol.

> I can't wait to meet that little girl she is so great!!

> Hugs,

> Crystal mom to (11), (3), and Eva (22 month old CHARGEr)

> wife to Dan in Illinois

>

>

> >

> > If anyone is interested, I just posted a silly video of Kennedy

> doing a tube

> > feeding. It's up at www.chargesyndrome.info, or you can watch it

> direct at

> > http://video.google.ca/videoplay?docid=-4579744791620198075 & hl=en-

> CA

> >

> >

> >

> > --

> > " It is far better to grasp the universe as it really is than to

> persist in

> > delusion, however satisfying and reassuring. " --Carl Sagan

> >

> >

> >

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Guest guest

- that was cool and really made me smile! K did a great job there....

Can't wait until is old enough to train to take over his own feeds

too!

is (Mum to , 3.5yrs, UK)

>

> If anyone is interested, I just posted a silly video of Kennedy doing a

> tube

> feeding. It's up at www.chargesyndrome.info, or you can watch it direct at

> http://video.google.ca/videoplay?docid=-4579744791620198075 & hl=en-CA

>

>

>

> --

> " It is far better to grasp the universe as it really is than to persist in

> delusion, however satisfying and reassuring. " --Carl Sagan

>

>

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is, you'll be surprised at how much he wants to take over after seeing

it done so many times.

>

> - that was cool and really made me smile! K did a great job

> there....

>

> Can't wait until is old enough to train to take over his own feeds

> too!

>

> is (Mum to , 3.5yrs, UK)

>

> On 3/8/07, Weir <kawfolks@... <kawfolks%40gmail.com>> wrote:

> >

> > If anyone is interested, I just posted a silly video of Kennedy doing a

> > tube

> > feeding. It's up at www.chargesyndrome.info, or you can watch it direct

> at

> > http://video.google.ca/videoplay?docid=-4579744791620198075 & hl=en-CA

> >

> >

> >

> > --

> > " It is far better to grasp the universe as it really is than to persist

> in

> > delusion, however satisfying and reassuring. " --Carl Sagan

> >

> >

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Guest guest

That is soooo great! Not only does it show how smart and grown up she is...but

it is so cute too! Whoever would have thought we'd be so excited that our

kiddos might learn to tubefeed themselves!!! :) Thanks for sharing...I'm going

to post it on Max's blog too if that is ok. :)

Cannot wait to meet your dynamo this summer!

Weir wrote:

If anyone is interested, I just posted a silly video of Kennedy doing

a tube

feeding. It's up at www.chargesyndrome.info, or you can watch it direct at

http://video.google.ca/videoplay?docid=-4579744791620198075 & hl=en-CA

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

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Guest guest

-

You and Kennedy have two of the sweetest voices I have ever heard! The video is

awesome, and you and Kennedy are awesome. feeds himself by gravity - so

he holds the syringe and pours his blended diet into the open (plungerless)

syringe. Even with gravity feedings (we have a Mic-Key button) it has happened

that the tubing has fallen off the syringe - so everytime Kennedy started to

compress the plunger, I would actually become extremely anxious that the tubing

would slide off and the food would shoot everywhere! :o)

Thank you so much for sharing your video - it really made my day! (I like how

you self-edited the " beer " part out when repeating for Kennedy ;o) )

Yay!

yuka

New Kennedy Video

If anyone is interested, I just posted a silly video of Kennedy doing a tube

feeding. It's up at www.chargesyndrome.info, or you can watch it direct at

http://video.google.ca/videoplay?docid=-4579744791620198075 & hl=en-CA

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

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Way to go Kennedy! It is wonderful to see this and it helps me to feel like our

future with tube feeding is going to be OK. I hope someday Jack is as

enthusiastic as Kennedy is!

~

Mom of Jack (5 mo. CHARGEr)

________________________________________________________________________________\

____

Never miss an email again!

Yahoo! Toolbar alerts you the instant new Mail arrives.

http://tools.search.yahoo.com/toolbar/features/mail/

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Amy go right ahead and post away - we can't wait to meet the amazing " Mighty

Max " too (I feel like there should be a little " tm " after his name!)

>

> That is soooo great! Not only does it show how smart and grown up she

> is...but it is so cute too! Whoever would have thought we'd be so excited

> that our kiddos might learn to tubefeed themselves!!! :) Thanks for

> sharing...I'm going to post it on Max's blog too if that is ok. :)

>

> Cannot wait to meet your dynamo this summer!

>

> Weir <kawfolks@... <kawfolks%40gmail.com>> wrote:

> If anyone is interested, I just posted a silly video of Kennedy doing a

> tube

> feeding. It's up at www.chargesyndrome.info, or you can watch it direct at

> http://video.google.ca/videoplay?docid=-4579744791620198075 & hl=en-CA

>

>

>

> --

> " It is far better to grasp the universe as it really is than to persist in

> delusion, however satisfying and reassuring. " --Carl Sagan

>

>

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, I would've loved to have seen this when K was a baby. I remember

seeing the kids in Houston feeding themselves in 1999 when Kennedy was one

and I was AMAZED.

L

>

> Way to go Kennedy! It is wonderful to see this and it helps me to feel

> like our future with tube feeding is going to be OK. I hope someday Jack is

> as enthusiastic as Kennedy is!

>

> ~

> Mom of Jack (5 mo. CHARGEr)

>

> __________________________________________________________

> Never miss an email again!

> Yahoo! Toolbar alerts you the instant new Mail arrives.

> http://tools.search.yahoo.com/toolbar/features/mail/

>

>

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Guest guest

Thanks Yuka - there have been times when we've had those " food explosions "

which Kennedy finds HILARIOUS if someone else is feeding her.

Lis

>

> -

>

> You and Kennedy have two of the sweetest voices I have ever heard! The

> video is awesome, and you and Kennedy are awesome. feeds himself by

> gravity - so he holds the syringe and pours his blended diet into the open

> (plungerless) syringe. Even with gravity feedings (we have a Mic-Key button)

> it has happened that the tubing has fallen off the syringe - so everytime

> Kennedy started to compress the plunger, I would actually become extremely

> anxious that the tubing would slide off and the food would shoot everywhere!

> :o)

>

> Thank you so much for sharing your video - it really made my day! (I like

> how you self-edited the " beer " part out when repeating for Kennedy ;o) )

>

> Yay!

>

> yuka

>

> New Kennedy Video

>

> If anyone is interested, I just posted a silly video of Kennedy doing a

> tube

> feeding. It's up at www.chargesyndrome.info, or you can watch it direct at

> http://video.google.ca/videoplay?docid=-4579744791620198075 & hl=en-CA

>

>

>

> --

> " It is far better to grasp the universe as it really is than to persist in

> delusion, however satisfying and reassuring. " --Carl Sagan

>

>

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I want to just eat her up!!!

mom to (31)

>

> If anyone is interested, I just posted a silly video of Kennedy

doing a tube

> feeding. It's up at www.chargesyndrome.info, or you can watch it

direct at

> http://video.google.ca/videoplay?docid=-4579744791620198075 & hl=en-CA

>

>

>

> --

> " It is far better to grasp the universe as it really is than to

persist in

> delusion, however satisfying and reassuring. " --Carl Sagan

>

>

>

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Guest guest

Wow!!! this is awesome!! I hope you don't mind but I've added this on

as link to Alissa's website! We are soo proud of little Kennedy!!!

> >

> > >

> > >

> > >

> > >

> > > If anyone is interested, I just posted a silly video of Kennedy

doing a

> > tube

> > > feeding. It's up at www.chargesyndrome.info, or you can watch

it direct

> > at

> > > http://video.google.ca/videoplay?docid=-

4579744791620198075 & hl=en-CA

> > > <

> > http://video.google.ca/videoplay?docid=-

4579744791620198075 & amp;hl=en-CA<http://video.google.ca/videoplay?

docid=-4579744791620198075 & hl=en-CA>

> > >

> > >

> > >

> >

> > --

> > Pamela J. , M.A., CAGS

> > Licensed Educational Psychologist

> > Deafblind Program

> > Perkins School for the Blind

> > 175 N. Beacon St.

> > Watertown, MA 02472

> >

> >

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Guest guest

That is so great! Those syringes are so hard to push. I'll have to keep the

head in mind when I'm having trouble! I can't wait for Ethan to start feeding

himself too.

Jody

Jody - mom to Ethan (ChARGE) and

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

Be a PS3 game guru.

Get your game face on with the latest PS3 news and previews at Yahoo! Games.

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Guest guest

Glad y'all liked it - she's never boring that's for sure!

>

> That is so great! Those syringes are so hard to push. I'll have to keep

> the head in mind when I'm having trouble! I can't wait for Ethan to start

> feeding himself too.

>

> Jody

>

> Jody - mom to Ethan (ChARGE) and

>

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

> Be a PS3 game guru.

> Get your game face on with the latest PS3 news and previews at Yahoo!

> Games.

>

>

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Guest guest

lisa robs doing the third instalment of seven up vid and im sure will b

showing it at the next conf so make sure u show kk and if you want to u can

vidio the vid and put it on ur blog lis infact anyone with a blog can LOL

>

> Glad y'all liked it - she's never boring that's for sure!

>

> On 3/8/07, Jody Wolfe <jdwolfe4@... <jdwolfe4%40yahoo.com>> wrote:

> >

> > That is so great! Those syringes are so hard to push. I'll have to keep

> > the head in mind when I'm having trouble! I can't wait for Ethan to

> start

> > feeding himself too.

> >

> > Jody

> >

> > Jody - mom to Ethan (ChARGE) and

> >

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

> > Be a PS3 game guru.

> > Get your game face on with the latest PS3 news and previews at Yahoo!

> > Games.

> >

> >

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Guest guest

He's certainly welcome to use it Ellen!

Lis

>

> lisa robs doing the third instalment of seven up vid and im sure will b

> showing it at the next conf so make sure u show kk and if you want to u

> can

> vidio the vid and put it on ur blog lis infact anyone with a blog can LOL

>

> On 09/03/07, Weir <kawfolks@... <kawfolks%40gmail.com>> wrote:

> >

> > Glad y'all liked it - she's never boring that's for sure!

> >

> > On 3/8/07, Jody Wolfe <jdwolfe4@...

<jdwolfe4%40yahoo.com><jdwolfe4%40yahoo.com>> wrote:

> > >

> > > That is so great! Those syringes are so hard to push. I'll have to

> keep

> > > the head in mind when I'm having trouble! I can't wait for Ethan to

> > start

> > > feeding himself too.

> > >

> > > Jody

> > >

> > > Jody - mom to Ethan (ChARGE) and

> > >

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

> > > Be a PS3 game guru.

> > > Get your game face on with the latest PS3 news and previews at Yahoo!

> > > Games.

> > >

> > >

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Guest guest

too stinking cute!!!

New Kennedy Video

If anyone is interested, I just posted a silly video of Kennedy doing a tube

feeding. It's up at www.chargesyndrome.info, or you can watch it direct at

http://video.google.ca/videoplay?docid=-4579744791620198075 & hl=en-CA

--

" It is far better to grasp the universe as it really is than to persist in

delusion, however satisfying and reassuring. " --Carl Sagan

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