Random Questions

[Guest guest]

Hi there!

I have been reading all of the posts and I had an entire list of

things I wanted to ask the other day - now I can't find my list - so

I am going to do my best to remember.

1) Are there any other Georgian's here - I know there was one down in

SOUTH GA - Anyone else? (I am in Metro Atlanta Area)

2) CALL ME IGNORANT - but PLease can someone explain to me exaclty

what a Trac is and what it does?

3) Also, what does it mean to be decannulated?

4) What is PERKINS? I saw someone talking about that kind of testing?

5) Just wondering at what age / stage you / your child were

diagnosed? and What was the facotr that made the decision?

6) For those of you/your children with good amoutn of hearing loss -

what form of communication did you/your child choose? and why?

7) What age/stage did things start to calm down some and become your

new normal?

Ok I think that is enough to get me going - THANKS IN ADVANCE for the

help!

Sarabeth - Hope's mom (6month old)

[Guest guest]

>

> Hi there!

>

> I have been reading all of the posts and I had an entire list of

> things I wanted to ask the other day - now I can't find my list - so

> I am going to do my best to remember.

>

> 1) Are there any other Georgian's here - I know there was one down in

> SOUTH GA - Anyone else? (I am in Metro Atlanta Area)

Off the top of my head i cant think of anyone. I know some in land and

in Florida, but I cant help you with Georgia

2) CALL ME IGNORANT - but PLease can someone explain to me exaclty

> what a Trac is and what it does?

A Trac (trach is correct spelling) Tracheotomy is a surgical procedure that

is usually done in the operating room under general anesthesia. A *tracheotomy

*is an incision into the trachea (windpipe) that forms a temporary or

permanent opening which is called a *tracheostomy.* Sometimes the terms

" tracheotomy " and " tracheostomy " are used interchangeably. The opening, or

hole, is called a *stoma*. The incision is usually vertical in children and

runs from the second to the fourth tracheal ring.

3) Also, what does it mean to be decannulated?

decannulated is just the removal of the Trach

4) What is PERKINS? I saw someone talking about that kind of testing?

Perkins in a school that specializes in working with deaf blind kids

5) Just wondering at what age / stage you / your child were

> diagnosed? and What was the facotr that made the decision?

This varies widely. Some dx at birth, some not untill their 20's or later. I

think Meg is the one who could elaborate more on this question. I dunno what

factors would make the dx. I its still a clinical dx. Some charge kids have

the gene, some dont.

6) For those of you/your children with good amoutn of hearing loss -

> what form of communication did you/your child choose? and why?

There is sign language, pictures, cued speach. Depends on the child's vision

loss and cognitive abilities.

7) What age/stage did things start to calm down some and become your

> new normal?

heh, um. calm down in wich way?

Ok I think that is enough to get me going - THANKS IN ADVANCE for the

> help!

> Sarabeth - Hope's mom (6month old)

Welcome and hope this helps a little, if anything i hope it was somewhat

funny.

Chantelle (CHARGE amongst other things....)

--

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

[Guest guest]

Sarabeth-

Chantelle did a great job with your questions. I have just a few tidbits to

add.

Perkins School for the Blind is near Boston, MA. Pam , from our list,

is the school psych there. They have a large deaf-blind program - perhaps

the best in the country - I don't know that there is another like it. They

do educational evals for anyone - we traveled there for an eval. The CHARGE

Foundation has moved their offices to the Perkins campus although we are not

affiliated with the school itself.

When did things calm down?? Well, for me, it was a slow process of entering

back into " real life " . As Aubrie got into school, I was able to get back

into work part-time. As her medical issues improved, we had a more " normal "

life schedule. Being in school meant that we no longer had therapists

coming to our home, so our home life became more normal. Aubrie sleeps

through the night and doesn't have significant behavior issues that

interfere with the daily flow of our lives. So everything is really quite

good here. She has quirks that make our home life unique - there's constant

music, we have some rigid schedules and expectations, etc. I it really

depends on how intense the child's medical needs are, how well the child can

communicate, and any behavior issues the child may have. For each family,

this is very different. I also think that the " normalcy " goes in stages.

For a while, we can slide along almost forgetting about CHARGE, and then

something happens to upset the apple cart - a big surgery, school concerns,

any big decision - school or medical, social issues. It can be anything

that will bring you right back down to your reality.

Michele W

Aubrie's mom 9 yrs CHaRgE and 15 yrs, wife to DJ

[Guest guest]

Chantelle,

good response!

pam

Re: Random Questions

>

> Hi there!

>

> I have been reading all of the posts and I had an entire list of

> things I wanted to ask the other day - now I can't find my list - so

> I am going to do my best to remember.

>

> 1) Are there any other Georgian's here - I know there was one down in

> SOUTH GA - Anyone else? (I am in Metro Atlanta Area)

Off the top of my head i cant think of anyone. I know some in land and

in Florida, but I cant help you with Georgia

2) CALL ME IGNORANT - but PLease can someone explain to me exaclty

> what a Trac is and what it does?

A Trac (trach is correct spelling) Tracheotomy is a surgical procedure that

is usually done in the operating room under general anesthesia. A *tracheotomy

*is an incision into the trachea (windpipe) that forms a temporary or

permanent opening which is called a *tracheostomy.* Sometimes the terms

" tracheotomy " and " tracheostomy " are used interchangeably. The opening, or

hole, is called a *stoma*. The incision is usually vertical in children and

runs from the second to the fourth tracheal ring.

3) Also, what does it mean to be decannulated?

decannulated is just the removal of the Trach

4) What is PERKINS? I saw someone talking about that kind of testing?

Perkins in a school that specializes in working with deaf blind kids

5) Just wondering at what age / stage you / your child were

> diagnosed? and What was the facotr that made the decision?

This varies widely. Some dx at birth, some not untill their 20's or later. I

think Meg is the one who could elaborate more on this question. I dunno what

factors would make the dx. I its still a clinical dx. Some charge kids have

the gene, some dont.

6) For those of you/your children with good amoutn of hearing loss -

> what form of communication did you/your child choose? and why?

There is sign language, pictures, cued speach. Depends on the child's vision

loss and cognitive abilities.

7) What age/stage did things start to calm down some and become your

> new normal?

heh, um. calm down in wich way?

Ok I think that is enough to get me going - THANKS IN ADVANCE for the

> help!

> Sarabeth - Hope's mom (6month old)

Welcome and hope this helps a little, if anything i hope it was somewhat

funny.

Chantelle (CHARGE amongst other things....)

--

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

[Guest guest]

The CHARGE foundation did not move their offices to Perkins. They are in

the process of moving part of the office to Helen Keller National Ctr on Long

Island.

[Guest guest]

Hi Sarabeth,

All I can add to the replies you've already received is that I'm from

Georgia, too. Southeast Georgia, close to the ville, Florida border.

My daughter, Charlotte, sees a number of medical professionals at Nemours

Children's Clinic in ville. I understand you are from the Atlanta area

(about 5 hours from me).

As you can see, this list is a wonderful resource. I've gained not only a

greater understanding but a greater sense of strength and support from this

wonderful family.

Good luck, and ask away!

Trish C.

Mom to Connor (almost 15), Charlotte (3 -CHARGE), wife to (16 yrs)

[Guest guest]

Error correction!! I said the Foundation was moving its offices to Perkins

campus. No! They are moving to the Helen Keller National Center. As I

typed my answer, I hesitated and wondered if I had it right. There you go

-- trust your gut, right? Anyway -- the Foundation office will be at HKNC

and at n Norbury's home as of the end of Feb. Sorry for creating

confusion!

Michele W

Re: Random Questions

Michele,

We are not moving to the Perkins campus. The Foundation will have an

office at the Helen Keller National Center (and at my house). We will

close the Vandiver office at the end of February.

n

[Guest guest]

Hey, Michele,

Thanks for adding to Chantelle¹s answer to Sarabeth¹s question. However,

one correction, the CHARGE Foundation moved their office to Long Island, NY

on the campus of the Helen Keller National Center.

pam

>

>

>

>

> Sarabeth-

>

> Chantelle did a great job with your questions. I have just a few tidbits to

> add.

>

> Perkins School for the Blind is near Boston, MA. Pam , from our list,

> is the school psych there. They have a large deaf-blind program - perhaps

> the best in the country - I don't know that there is another like it. They

> do educational evals for anyone - we traveled there for an eval. The CHARGE

> Foundation has moved their offices to the Perkins campus although we are not

> affiliated with the school itself.

>

> When did things calm down?? Well, for me, it was a slow process of entering

> back into " real life " . As Aubrie got into school, I was able to get back

> into work part-time. As her medical issues improved, we had a more " normal "

> life schedule. Being in school meant that we no longer had therapists

> coming to our home, so our home life became more normal. Aubrie sleeps

> through the night and doesn't have significant behavior issues that

> interfere with the daily flow of our lives. So everything is really quite

> good here. She has quirks that make our home life unique - there's constant

> music, we have some rigid schedules and expectations, etc. I it really

> depends on how intense the child's medical needs are, how well the child can

> communicate, and any behavior issues the child may have. For each family,

> this is very different. I also think that the " normalcy " goes in stages.

> For a while, we can slide along almost forgetting about CHARGE, and then

> something happens to upset the apple cart - a big surgery, school concerns,

> any big decision - school or medical, social issues. It can be anything

> that will bring you right back down to your reality.

>

> Michele W

> Aubrie's mom 9 yrs CHaRgE and 15 yrs, wife to DJ

>

>

[Guest guest]

I'll try to answer some;

>

> Hi there!

>

> I have been reading all of the posts and I had an entire list of

> things I wanted to ask the other day - now I can't find my list -

so

> I am going to do my best to remember.

>

> 1) Are there any other Georgian's here - I know there was one down

in

> SOUTH GA - Anyone else? (I am in Metro Atlanta Area)

****There is a family in Georgia with a girl who is about 9. I am

not sure if they are part of the Foundation any longer. They were in

the Atlanta area.

>

*******The next 3 questions are better answered by others. I know of

them through reading only, not personal experience.

> 2) CALL ME IGNORANT - but PLease can someone explain to me exaclty

> what a Trac is and what it does?

>

> 3) Also, what does it mean to be decannulated?

>

> 4) What is PERKINS? I saw someone talking about that kind of

testing?

>

> 5) Just wondering at what age / stage you / your child were

> diagnosed? and What was the facotr that made the decision?

******My daughter was diagnosised at birth. She had coanal atresia

and was sent immediately to CHOP where the geneticist knew right away

what it was.

>

> 6) For those of you/your children with good amoutn of hearing loss -

> what form of communication did you/your child choose? and why?

******'s loss ranges from mild to severe. We use hearing

aides. She is verbal. We used some sign in the beginning and she

did great with it but SHE also learned to talk, listen and read lips

to become verbal. We let the sign go, although at times I regret

it. She doesn't need it but it may be helpful.

>

> 7) What age/stage did things start to calm down some and become

your

> new normal?

*****When the medical slowed, we got into a routine. That routine

still continues to shift every so often. Sometimes I think we are on

our way then something pops up. Not to frighten you, but it is a

continuing process. It will get easier....for us it was probably me

learning to adjust and accept change. is in school and thrives

there. But it is not without its concerns. When I remember that she

is an individual, nor a comparison, it goes much more smoothly. You

were right to call it " your new normal " because that's what it is.

When we got through the first year, I knew we could tkae on the rest.

>

>

> Ok I think that is enough to get me going - THANKS IN ADVANCE for

the

> help!

> Sarabeth - Hope's mom (6month old)

>