Michele - New BAHA Photos Uploaded

[Guest guest]

Michele (and anyone else who is interested),

I uploaded Kennedy's BAHA tale & photos, as well as an update of her surgery

listings with new photos. Just go to her page on our website:

http://www.chargesyndrome.info/kennedy.html and check down at the bottom for

both links.

Best,

Lis

--

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

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

[Guest guest]

-

That was so helpful! Thank you! Do you have to be careful about the

abutment now? I imagine you have to be careful not to comb it.

The softband BAHA is exactly what Aubrie is trying right now. Any tips for

keeping it on? It looked like Kennedy's was on her hair. Can be it placed

over hair or do we need to keep it in that hairless place behind her ear?

The band on hers has teddy bears and balloons - not exactly right for a 3rd

grader. I can't change it out because it's a loaner, but I may try to sew a

sleeve that will cover it. I noticed Kennedy's was a nice solid color. Did

you do anything to dress it up? Aubrie's needs to go across her forehead

more than a fashion headband does. Did you find that with Kennedy's?

Thanks so much for taking the time to post the photos!

Michele W

[Guest guest]

Where's the pictures???? I am sure Patty would love to acutally see them.

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

Michele, YES we wore it up over her hear just like a hair band and the " aid "

part sat on the mastoid, behind her ear. It shouldn't need to go around her

forehead. Just pull the velcro tighter to keep it around her head. Aubrie

will probably come to put it where SHE likes it best, Kennedy was very

fussy, she had to put it in it's place each morning. The solid band came

from the company - I ordered it (even though it was a loaner) because we had

the teddy bears pink one and she was getting older. They are expensive

though - $160 for 2 (they come in 2 packs). As for dressing it up, we

bought dollar store hair bands (solid or patterned) and I cut a square hole

in them (they had to be the wider ones) and put those on top of the BAHA and

stuck the " aid " out of the hole. I have to do that with hats, too,

sometimes (cut) because her BAHA will whistle and drive her bonkers.

Any other questions, just let me know!

PS - did you look at the " surgeries " page? I'm trying to teach myself

javascript and I worked really hard on putting " hospital - icky " pictures

down the left side of the screen so parents could see their child, where

they may be at right now and then if you " mouseover " the pictures they

switch to " look at me now " pictures...I'm trying to do all the things I

wanted to see when we were in hospital wondering about things with K.

> -

>

> That was so helpful! Thank you! Do you have to be careful about the

> abutment now? I imagine you have to be careful not to comb it.

>

> The softband BAHA is exactly what Aubrie is trying right now. Any tips for

> keeping it on? It looked like Kennedy's was on her hair. Can be it placed

> over hair or do we need to keep it in that hairless place behind her ear?

> The band on hers has teddy bears and balloons - not exactly right for a

> 3rd

> grader. I can't change it out because it's a loaner, but I may try to sew

> a

> sleeve that will cover it. I noticed Kennedy's was a nice solid color. Did

> you do anything to dress it up? Aubrie's needs to go across her forehead

> more than a fashion headband does. Did you find that with Kennedy's?

>

> Thanks so much for taking the time to post the photos!

>

> Michele W

>

>

[Guest guest]

-

Great tips! Yes, I went through the surgeries page and marveled at how you

did the pass over then/now thing!! Love it!

Michele W

[Guest guest]

Bonnie,

Just go to her page on our website:

http://www.chargesyndrome.info/kennedy.html and check down at the bottom for

both links.

>

> Where's the pictures???? I am sure Patty would love to acutally see

> them.

>

> Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

>

>

[Guest guest]

, fascinating and very clear pictures to see for parents, great idea,

although i may never need one, still great to see what everyone is on about

and put a picture to the topic, especially if you dont have one! love Les

>

> Michele (and anyone else who is interested),

> I uploaded Kennedy's BAHA tale & photos, as well as an update of her

> surgery

> listings with new photos. Just go to her page on our website:

> http://www.chargesyndrome.info/kennedy.html and check down at the bottom

> for

> both links.

>

> Best,

> Lis

>

> --

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

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

>

>

[Guest guest]

lisa love that look at me now pics its cool

>

> , fascinating and very clear pictures to see for parents, great

> idea,

> although i may never need one, still great to see what everyone is on

> about

> and put a picture to the topic, especially if you dont have one! love Les

>

>

> On 20/08/06, Weir <kawfolks@... <kawfolks%40gmail.com>> wrote:

> >

> > Michele (and anyone else who is interested),

> > I uploaded Kennedy's BAHA tale & photos, as well as an update of her

> > surgery

> > listings with new photos. Just go to her page on our website:

> > http://www.chargesyndrome.info/kennedy.html and check down at the bottom

> > for

> > both links.

> >

> > Best,

> > Lis

> >

> > --

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

> in

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

> >

> >

[Guest guest]

Thanks tons for that. Patty's made an appointment with her doctor to talk

about the BAHA!

Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

[Guest guest]

Bonnie, the surgeries weren't really that bad AT ALL...she left the hospital

the same day both times. Sometimes, in adults they do it all in one surgery

as well. She didn't have any pain hardly (well managed with Tylenol) and

she did great both times.

>

> Thanks tons for that. Patty's made an appointment with her doctor to

> talk

> about the BAHA!

>

> Bonnie, Mom to a 23, Patty CHARGE 21, and wife to

>

>

[Guest guest]

,

Thanks for posting those pictures and everything else. She's now changed her

mind.At first Patty was uncomfortable with the pictures. But then she looked

at them again. She's made an appointment with her ENT to discuss getting a

BAHA. She's already spoken with her audiologist who feels that it would

benefit her greatly.

Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

[Guest guest]

Bonnie,

Please impart to her that of a lot of K's other surgeries, these seemed so

" easy " - she was up and playing on Nintendo really soon after (I know

she's younger and that's a factor, but still). She got to go home the same

day both times. They weren't all that bad at all. The ENT who did K's has

been doing them for 15 years and is the " best " in Canada at Toronto's

reknowned Hospital for Sick Children.

Best to Patty, tell her I think she will really like it...I have a video and

a CD Rom I believe all about it in more depth if she'd like, I can certainly

mail it to you. I got it from the former president of Entific,

Billings, who attended our CHARGE Syndrome Canada AGM a few years back.

Super guy!

>

> ,

>

> Thanks for posting those pictures and everything else. She's now changed

> her

> mind.At first Patty was uncomfortable with the pictures. But then she

> looked

> at them again. She's made an appointment with her ENT to discuss getting a

>

> BAHA. She's already spoken with her audiologist who feels that it would

> benefit her greatly.

>

> Bonnie, Mom to Kris 23, Patty CHARGE 21 and wife to

>

>

>

[Guest guest]

Bonnie-

I know it'll make Aubrie feel better to know that Patty's doing it to.

Maybe the timing of their surgeries will be close. Maybe Patty would

appreciate knowing that Aubrie'll be going through it with her and is

looking forward to sharing the experience with her role model.

Has Patty been wearing the soft band?? I don't remember. I finally figured

out how to cover the bad. I took the kind of thick headband from the store

that's a tube of fabric. Where the seam is, I cut a slit on either side of

the seam on the back/inside so I could insert the band there and fasten it.

Then I cut a little hole for the aide to stick out. First glance, it just

looks like Aubrie's wearing a regular headband. The aide is behind her ear

and under her hair a bit so it's not immediately noticeable.

One downside of the BAHA-with the softband, we can move the aide to her

forehead when she wears her horseback riding helmet. With the implanted

BAHA, I guess we'll have to search for a helmet that fits above the

processor.

Michele W