Re: Re: Need advice, pls!!

[Guest guest]

pat if it makes you feel any better we are like the fift largest country

sydneys the largest captial city in aus and we have ntothing right there for

people like me and my friends

>

> Pat-

>

> Its really hard to say what Aidan needs without seeing him, but how

> about referring your PT to this listserve. I found this listserve

> when I had a student who had CHARGE, and I didn't know what to do

> (very long story, but he had many many issues and it was not

> straightforward. In terms of some of the things that Aidan will

> need, basic PT training can help. However, I know that NOTHING in

> CHARGE is basic, so that is why I would refer your PT here.

>

> This may be speaking out turn, but I know Amy (Max's mom)

> has " therapy time " with Max everyday, and he seems to be doing

> well. Perhaps she would be able to tell you specifically what she

> is doing with Max (I know its LOTS of tummy time--there are pictures

> to prove it).

>

> Aidan will come into things in his own time. Do you have a boppy

> pillow (a crescent shaped pillow)? You could sit Aidan up in that

> for some support. If it is not enough, 2 boppies stacked on each

> other give more support, and up higher on the trunk. That would let

> him focus on his head control and fine motor skills also.

>

> I hope this helps. Good luck!

>

> Kate (PT in NY)

>

> ---

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group 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 web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

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

>

[Guest guest]

pat if it makes you feel any better we are like the fift largest country

sydneys the largest captial city in aus and we have ntothing right there for

people like me and my friends

>

> Pat-

>

> Its really hard to say what Aidan needs without seeing him, but how

> about referring your PT to this listserve. I found this listserve

> when I had a student who had CHARGE, and I didn't know what to do

> (very long story, but he had many many issues and it was not

> straightforward. In terms of some of the things that Aidan will

> need, basic PT training can help. However, I know that NOTHING in

> CHARGE is basic, so that is why I would refer your PT here.

>

> This may be speaking out turn, but I know Amy (Max's mom)

> has " therapy time " with Max everyday, and he seems to be doing

> well. Perhaps she would be able to tell you specifically what she

> is doing with Max (I know its LOTS of tummy time--there are pictures

> to prove it).

>

> Aidan will come into things in his own time. Do you have a boppy

> pillow (a crescent shaped pillow)? You could sit Aidan up in that

> for some support. If it is not enough, 2 boppies stacked on each

> other give more support, and up higher on the trunk. That would let

> him focus on his head control and fine motor skills also.

>

> I hope this helps. Good luck!

>

> Kate (PT in NY)

>

> ---

>

>

>

>

>

>

> CHARGE SYNDROME LISTSERV PHOTO PAGE:

> http://www.imagestation.com/album/?id=2117043995

>

> Membership of this email support group 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 web site at http://www.chargesyndrome.org

>

> 8th International

> CHARGE Syndrome Conference, July, 2007. Information will be available at

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

>

[Guest guest]

Now that the Manual is accessible on the Internet why don't you read through

it and print out information you can give to specialists! Or at least tell

them where to find it.

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