Re: support groups for CHARGE

[Guest guest]

Hi Jen,

Ben's mom and I have talked several times...she is wonderful woman and mommy

and tonight when I checked his website and learned the latest, I was very sad.

They have been on my mind a lot lately. I know a shunt is not pleasant but if

that is what Ben needs, he will benefit greatly from it. But it is all soooo

frustrating because there doesn't appear to be a clear cut answer and I know

that is driving Amy nuts!!!

Personally I have received far more support from this CHARGE group than any

local group thus far. And especially since Amy is a bit homebound (like most of

us) because of Ben's care requirements, she probably would have a difficult time

attending meetings anyway. Since CHARGE is not all that common, there probably

won't be any local CHARGE groups...I know we are starting one for the state of

WA but so far we only have about 10 families. Perhaps there is a statewide

group? Or do you know if she attended a parent to parent support group meeting?

For some reason, I don't think she has yet. But that might be an idea...but I

imagine right now she just needs to get through this next stage with Ben and

then perhaps she will be more available to meeting new people and getting

support.

I am calling Amy tomorrow morning and hopefully she knows I am always just a

phone call away. So hard to be patient, but boy does this genetic disorder

teach you just that...we never know what is going to happen next!

Amy

balletgal1976 wrote:

Hi All,

I have not written in awhile, but today, my nephew Ben continued

spitting up at my sister-in-law's house and we are all very

concerned about him. It's not just formula, but stomach acid with a

yellowish color. The doctors just don't seem to know what is wrong

with him and tomorrow, he is going back to Children's Hospital for

an indefinite amount of time. I hope they run the tests and find

out what is wrong with him so we can find a solution since he

continues to do this almost every time he eats. He does have a

nissen (sp?) and they've checked his feeding tube out and some other

things and say those seem to be okay(I'm not sure....it seems like

the poor little guy has gone through so much).

My sister-in-law is worried b/c Ben has been

sleeping a lot more, kind of lethargic....just not his normal self.

They have been watching him because his head seems to be getting

larger than it should be and he is right on the border of possibly

having to have a shunt put in....I hope to God that there isn't

fluid on his brain. And if there is, I wish they would figure it out

asap and do what needs to be done.

Has anyone experienced this and if so, can you share with us? Also,

we were curious about support groups in the Mason, Ohio area for

parents of kids with CHARGE....or special needs children in

general.

My sister-in-law has been so strong through all of this. She is

true inspiration to our family and we are so proud of how well she

and her husband have been handling things, but today was hard

knowing that Ben would have to go back into the hospital for more

tests and possibly the shunt. I would like to be able to suggest a

support group b/c I can't even imagine the stress, frustration and

concern she has for Ben and it seems like right when we all think

things are going well, there is another setback. Ben is such a

fighter and if anyone can get through all of these things, it's

surely him. I just want to make sure my sister-in-law and brother-

in-law get to know other parents in the area that can understand

what they are going through since our family cannot totally relate.

I often feel helpless no matter what I try to do to help and wish I

could do more. No matter what, it never seems like enough and

probably never will.

Thanks for taking time to read and respond (if you can) to this

email. I have a feeling this will not be Ben's last time in the

hospital, so I want to make sure they have the support they need

from other people who understand their situation.

Jen

Aunt of Ben (8 months old, 6 months actual)

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]

Hi Jen,

Ben's mom and I have talked several times...she is wonderful woman and mommy

and tonight when I checked his website and learned the latest, I was very sad.

They have been on my mind a lot lately. I know a shunt is not pleasant but if

that is what Ben needs, he will benefit greatly from it. But it is all soooo

frustrating because there doesn't appear to be a clear cut answer and I know

that is driving Amy nuts!!!

Personally I have received far more support from this CHARGE group than any

local group thus far. And especially since Amy is a bit homebound (like most of

us) because of Ben's care requirements, she probably would have a difficult time

attending meetings anyway. Since CHARGE is not all that common, there probably

won't be any local CHARGE groups...I know we are starting one for the state of

WA but so far we only have about 10 families. Perhaps there is a statewide

group? Or do you know if she attended a parent to parent support group meeting?

For some reason, I don't think she has yet. But that might be an idea...but I

imagine right now she just needs to get through this next stage with Ben and

then perhaps she will be more available to meeting new people and getting

support.

I am calling Amy tomorrow morning and hopefully she knows I am always just a

phone call away. So hard to be patient, but boy does this genetic disorder

teach you just that...we never know what is going to happen next!

Amy

balletgal1976 wrote:

Hi All,

I have not written in awhile, but today, my nephew Ben continued

spitting up at my sister-in-law's house and we are all very

concerned about him. It's not just formula, but stomach acid with a

yellowish color. The doctors just don't seem to know what is wrong

with him and tomorrow, he is going back to Children's Hospital for

an indefinite amount of time. I hope they run the tests and find

out what is wrong with him so we can find a solution since he

continues to do this almost every time he eats. He does have a

nissen (sp?) and they've checked his feeding tube out and some other

things and say those seem to be okay(I'm not sure....it seems like

the poor little guy has gone through so much).

My sister-in-law is worried b/c Ben has been

sleeping a lot more, kind of lethargic....just not his normal self.

They have been watching him because his head seems to be getting

larger than it should be and he is right on the border of possibly

having to have a shunt put in....I hope to God that there isn't

fluid on his brain. And if there is, I wish they would figure it out

asap and do what needs to be done.

Has anyone experienced this and if so, can you share with us? Also,

we were curious about support groups in the Mason, Ohio area for

parents of kids with CHARGE....or special needs children in

general.

My sister-in-law has been so strong through all of this. She is

true inspiration to our family and we are so proud of how well she

and her husband have been handling things, but today was hard

knowing that Ben would have to go back into the hospital for more

tests and possibly the shunt. I would like to be able to suggest a

support group b/c I can't even imagine the stress, frustration and

concern she has for Ben and it seems like right when we all think

things are going well, there is another setback. Ben is such a

fighter and if anyone can get through all of these things, it's

surely him. I just want to make sure my sister-in-law and brother-

in-law get to know other parents in the area that can understand

what they are going through since our family cannot totally relate.

I often feel helpless no matter what I try to do to help and wish I

could do more. No matter what, it never seems like enough and

probably never will.

Thanks for taking time to read and respond (if you can) to this

email. I have a feeling this will not be Ben's last time in the

hospital, so I want to make sure they have the support they need

from other people who understand their situation.

Jen

Aunt of Ben (8 months old, 6 months actual)

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]

Hi Jen,

Ben's mom and I have talked several times...she is wonderful woman and mommy

and tonight when I checked his website and learned the latest, I was very sad.

They have been on my mind a lot lately. I know a shunt is not pleasant but if

that is what Ben needs, he will benefit greatly from it. But it is all soooo

frustrating because there doesn't appear to be a clear cut answer and I know

that is driving Amy nuts!!!

Personally I have received far more support from this CHARGE group than any

local group thus far. And especially since Amy is a bit homebound (like most of

us) because of Ben's care requirements, she probably would have a difficult time

attending meetings anyway. Since CHARGE is not all that common, there probably

won't be any local CHARGE groups...I know we are starting one for the state of

WA but so far we only have about 10 families. Perhaps there is a statewide

group? Or do you know if she attended a parent to parent support group meeting?

For some reason, I don't think she has yet. But that might be an idea...but I

imagine right now she just needs to get through this next stage with Ben and

then perhaps she will be more available to meeting new people and getting

support.

I am calling Amy tomorrow morning and hopefully she knows I am always just a

phone call away. So hard to be patient, but boy does this genetic disorder

teach you just that...we never know what is going to happen next!

Amy

balletgal1976 wrote:

Hi All,

I have not written in awhile, but today, my nephew Ben continued

spitting up at my sister-in-law's house and we are all very

concerned about him. It's not just formula, but stomach acid with a

yellowish color. The doctors just don't seem to know what is wrong

with him and tomorrow, he is going back to Children's Hospital for

an indefinite amount of time. I hope they run the tests and find

out what is wrong with him so we can find a solution since he

continues to do this almost every time he eats. He does have a

nissen (sp?) and they've checked his feeding tube out and some other

things and say those seem to be okay(I'm not sure....it seems like

the poor little guy has gone through so much).

My sister-in-law is worried b/c Ben has been

sleeping a lot more, kind of lethargic....just not his normal self.

They have been watching him because his head seems to be getting

larger than it should be and he is right on the border of possibly

having to have a shunt put in....I hope to God that there isn't

fluid on his brain. And if there is, I wish they would figure it out

asap and do what needs to be done.

Has anyone experienced this and if so, can you share with us? Also,

we were curious about support groups in the Mason, Ohio area for

parents of kids with CHARGE....or special needs children in

general.

My sister-in-law has been so strong through all of this. She is

true inspiration to our family and we are so proud of how well she

and her husband have been handling things, but today was hard

knowing that Ben would have to go back into the hospital for more

tests and possibly the shunt. I would like to be able to suggest a

support group b/c I can't even imagine the stress, frustration and

concern she has for Ben and it seems like right when we all think

things are going well, there is another setback. Ben is such a

fighter and if anyone can get through all of these things, it's

surely him. I just want to make sure my sister-in-law and brother-

in-law get to know other parents in the area that can understand

what they are going through since our family cannot totally relate.

I often feel helpless no matter what I try to do to help and wish I

could do more. No matter what, it never seems like enough and

probably never will.

Thanks for taking time to read and respond (if you can) to this

email. I have a feeling this will not be Ben's last time in the

hospital, so I want to make sure they have the support they need

from other people who understand their situation.

Jen

Aunt of Ben (8 months old, 6 months actual)

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]

the hosptial should have soem form of group or know of soemthing

>

> Hi Jen,

>

> Ben's mom and I have talked several times...she is wonderful woman and

> mommy and tonight when I checked his website and learned the latest, I was

> very sad. They have been on my mind a lot lately. I know a shunt is not

> pleasant but if that is what Ben needs, he will benefit greatly from

> it. But it is all soooo frustrating because there doesn't appear to be a

> clear cut answer and I know that is driving Amy nuts!!!

>

> Personally I have received far more support from this CHARGE group than

> any local group thus far. And especially since Amy is a bit homebound (like

> most of us) because of Ben's care requirements, she probably would have a

> difficult time attending meetings anyway. Since CHARGE is not all that

> common, there probably won't be any local CHARGE groups...I know we are

> starting one for the state of WA but so far we only have about 10

> families. Perhaps there is a statewide group? Or do you know if she

> attended a parent to parent support group meeting? For some reason, I don't

> think she has yet. But that might be an idea...but I imagine right now she

> just needs to get through this next stage with Ben and then perhaps she will

> be more available to meeting new people and getting support.

>

> I am calling Amy tomorrow morning and hopefully she knows I am always just

> a phone call away. So hard to be patient, but boy does this genetic

> disorder teach you just that...we never know what is going to happen next!

>

> Amy

>

>

> balletgal1976 wrote:

> Hi All,

> I have not written in awhile, but today, my nephew Ben continued

> spitting up at my sister-in-law's house and we are all very

> concerned about him. It's not just formula, but stomach acid with a

> yellowish color. The doctors just don't seem to know what is wrong

> with him and tomorrow, he is going back to Children's Hospital for

> an indefinite amount of time. I hope they run the tests and find

> out what is wrong with him so we can find a solution since he

> continues to do this almost every time he eats. He does have a

> nissen (sp?) and they've checked his feeding tube out and some other

> things and say those seem to be okay(I'm not sure....it seems like

> the poor little guy has gone through so much).

>

> My sister-in-law is worried b/c Ben has been

> sleeping a lot more, kind of lethargic....just not his normal self.

> They have been watching him because his head seems to be getting

> larger than it should be and he is right on the border of possibly

> having to have a shunt put in....I hope to God that there isn't

> fluid on his brain. And if there is, I wish they would figure it out

> asap and do what needs to be done.

>

> Has anyone experienced this and if so, can you share with us? Also,

> we were curious about support groups in the Mason, Ohio area for

> parents of kids with CHARGE....or special needs children in

> general.

>

> My sister-in-law has been so strong through all of this. She is

> true inspiration to our family and we are so proud of how well she

> and her husband have been handling things, but today was hard

> knowing that Ben would have to go back into the hospital for more

> tests and possibly the shunt. I would like to be able to suggest a

> support group b/c I can't even imagine the stress, frustration and

> concern she has for Ben and it seems like right when we all think

> things are going well, there is another setback. Ben is such a

> fighter and if anyone can get through all of these things, it's

> surely him. I just want to make sure my sister-in-law and brother-

> in-law get to know other parents in the area that can understand

> what they are going through since our family cannot totally relate.

> I often feel helpless no matter what I try to do to help and wish I

> could do more. No matter what, it never seems like enough and

> probably never will.

>

> Thanks for taking time to read and respond (if you can) to this

> email. I have a feeling this will not be Ben's last time in the

> hospital, so I want to make sure they have the support they need

> from other people who understand their situation.

>

> Jen

> Aunt of Ben (8 months old, 6 months actual)

>

>

>

>

>

>

> 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]

the hosptial should have soem form of group or know of soemthing

>

> Hi Jen,

>

> Ben's mom and I have talked several times...she is wonderful woman and

> mommy and tonight when I checked his website and learned the latest, I was

> very sad. They have been on my mind a lot lately. I know a shunt is not

> pleasant but if that is what Ben needs, he will benefit greatly from

> it. But it is all soooo frustrating because there doesn't appear to be a

> clear cut answer and I know that is driving Amy nuts!!!

>

> Personally I have received far more support from this CHARGE group than

> any local group thus far. And especially since Amy is a bit homebound (like

> most of us) because of Ben's care requirements, she probably would have a

> difficult time attending meetings anyway. Since CHARGE is not all that

> common, there probably won't be any local CHARGE groups...I know we are

> starting one for the state of WA but so far we only have about 10

> families. Perhaps there is a statewide group? Or do you know if she

> attended a parent to parent support group meeting? For some reason, I don't

> think she has yet. But that might be an idea...but I imagine right now she

> just needs to get through this next stage with Ben and then perhaps she will

> be more available to meeting new people and getting support.

>

> I am calling Amy tomorrow morning and hopefully she knows I am always just

> a phone call away. So hard to be patient, but boy does this genetic

> disorder teach you just that...we never know what is going to happen next!

>

> Amy

>

>

> balletgal1976 wrote:

> Hi All,

> I have not written in awhile, but today, my nephew Ben continued

> spitting up at my sister-in-law's house and we are all very

> concerned about him. It's not just formula, but stomach acid with a

> yellowish color. The doctors just don't seem to know what is wrong

> with him and tomorrow, he is going back to Children's Hospital for

> an indefinite amount of time. I hope they run the tests and find

> out what is wrong with him so we can find a solution since he

> continues to do this almost every time he eats. He does have a

> nissen (sp?) and they've checked his feeding tube out and some other

> things and say those seem to be okay(I'm not sure....it seems like

> the poor little guy has gone through so much).

>

> My sister-in-law is worried b/c Ben has been

> sleeping a lot more, kind of lethargic....just not his normal self.

> They have been watching him because his head seems to be getting

> larger than it should be and he is right on the border of possibly

> having to have a shunt put in....I hope to God that there isn't

> fluid on his brain. And if there is, I wish they would figure it out

> asap and do what needs to be done.

>

> Has anyone experienced this and if so, can you share with us? Also,

> we were curious about support groups in the Mason, Ohio area for

> parents of kids with CHARGE....or special needs children in

> general.

>

> My sister-in-law has been so strong through all of this. She is

> true inspiration to our family and we are so proud of how well she

> and her husband have been handling things, but today was hard

> knowing that Ben would have to go back into the hospital for more

> tests and possibly the shunt. I would like to be able to suggest a

> support group b/c I can't even imagine the stress, frustration and

> concern she has for Ben and it seems like right when we all think

> things are going well, there is another setback. Ben is such a

> fighter and if anyone can get through all of these things, it's

> surely him. I just want to make sure my sister-in-law and brother-

> in-law get to know other parents in the area that can understand

> what they are going through since our family cannot totally relate.

> I often feel helpless no matter what I try to do to help and wish I

> could do more. No matter what, it never seems like enough and

> probably never will.

>

> Thanks for taking time to read and respond (if you can) to this

> email. I have a feeling this will not be Ben's last time in the

> hospital, so I want to make sure they have the support they need

> from other people who understand their situation.

>

> Jen

> Aunt of Ben (8 months old, 6 months actual)

>

>

>

>

>

>

> 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]

Jen,

I cannot remember, which county is Mason in? I used to work for

Hamilton County Board of MR/DD, which is where I met my first CHARGE

family, and how I came to find this group. If Ben has not already

been referred to Early Intervention, that could be the first step.

Often they can link up families with the support and resources they

need. If he is in Hamilton County (which I don't think it is, but

its worth a shot), I can tell you that some of the staff is

EXCELLENT and have experience with CHARGE. I know there are several

families from Ohio on this listserve, with a few fron Cinci/Northern

KY, and a few from Columbus, Chillicothe and Zanesville.

In terms of how Ben is acting, it does sound like hydrocephalus, in

which case, they usually will want to put a shunt in. It is very

scary. The only comfort I can provide is that kids are usually

worlds better after the shunt and its like they are a new kid. No

one want to see Ben have to go through it, but if its needed, it

might really improve the quality of his life. I will pray that this

is not what's going on and he starts to improve without a shunt.

Kate (PT in NY, used to live in Cinci and Columbus)

[Guest guest]

Hi Jen,

Sorry to hear that Ben has to go back to the hospital. I see emails from Amy

periodically on the CHARGE list and keep up with his web site every now and

then, and it seems that he has been through so much. Poor little guy--I sure

hope the doctors can find some answers for him.

About support groups in this area, I'm not really familiar with any formal

ones. I believe there is a support group for moms of special needs kids in

Cincinnati, but I'm not sure of the name of it--I just heard of it second-hand a

couple years ago when used to go down to Children's for her therapies a

few times a week. I bet if you or Amy asked around down at the hospital, you

could find out the name and contact info. The Department of Developmental

Pediatrics (Location D, second floor in the hospital) would probably have info

on it--they're a great resource for things like that. There's a support group

called ASK through the Mason school district for parents of special needs kids,

but it's mainly informational on education-related topics more than actual

support. Other than that, the only thing I've found is the CHARGE list.

I wonder if Amy and some others in the Cincinnati area would be interested in

starting an informal CHARGE support group/network. I know of another family in

Colerain who I talk to regularly, and there's another family in southeast

Indiana, just across the border, whose mom is here on the CHARGE list. There's

also another family just south of Dayton who I've emailed with a couple times.

's ENT doctor just mentioned to us last week that he's seeing more and more

kids with CHARGE on a regular basis, so I'm thinking we could probably spread

the word to other families pretty easily through the various departments in the

hospital. Let me know if you think others would be interested. This is

something I've been thinking about doing for a while anyway, so I'd be glad to

try to get the ball rolling with it.

Also, if Amy would ever like to talk or would like a little company, she's

welcome to call me or email me. She may not have my number anymore, so let me

know if you need it and I'll send it to you directly.

, mom to (4)

Mason, OH

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

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[Guest guest]

Hi Jen,

Sorry to hear that Ben has to go back to the hospital. I see emails from Amy

periodically on the CHARGE list and keep up with his web site every now and

then, and it seems that he has been through so much. Poor little guy--I sure

hope the doctors can find some answers for him.

About support groups in this area, I'm not really familiar with any formal

ones. I believe there is a support group for moms of special needs kids in

Cincinnati, but I'm not sure of the name of it--I just heard of it second-hand a

couple years ago when used to go down to Children's for her therapies a

few times a week. I bet if you or Amy asked around down at the hospital, you

could find out the name and contact info. The Department of Developmental

Pediatrics (Location D, second floor in the hospital) would probably have info

on it--they're a great resource for things like that. There's a support group

called ASK through the Mason school district for parents of special needs kids,

but it's mainly informational on education-related topics more than actual

support. Other than that, the only thing I've found is the CHARGE list.

I wonder if Amy and some others in the Cincinnati area would be interested in

starting an informal CHARGE support group/network. I know of another family in

Colerain who I talk to regularly, and there's another family in southeast

Indiana, just across the border, whose mom is here on the CHARGE list. There's

also another family just south of Dayton who I've emailed with a couple times.

's ENT doctor just mentioned to us last week that he's seeing more and more

kids with CHARGE on a regular basis, so I'm thinking we could probably spread

the word to other families pretty easily through the various departments in the

hospital. Let me know if you think others would be interested. This is

something I've been thinking about doing for a while anyway, so I'd be glad to

try to get the ball rolling with it.

Also, if Amy would ever like to talk or would like a little company, she's

welcome to call me or email me. She may not have my number anymore, so let me

know if you need it and I'll send it to you directly.

, mom to (4)

Mason, OH

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

How low will we go? Check out Yahoo! Messenger’s low PC-to-Phone call rates.

[Guest guest]

I get so much from this group and I also get much support from a group in our

area called " Night OWLS. " It is a local church that provides respite care and

support for special needs children and their families. Once every six weeks

they take the special needs kids and their siblings on a Friday night from 6-10

(I call it the night my spouse and I can make eye contact!). During that time

they have awesome activities and one on one care for each child. The volunteer

staff is made up of medical professionals and non medical people - they are

incredible! We also have a mom's bible study once a month, an annual mom's

retreat, and an annual family retreat to a local special needs children's camp.

There are several churches in our area that do this - I have met some wonderful

volunteers (our latest has a MR sister - it was great to meet a young adult who

has grown up similarly to what my daughters will experience) and wonderful mom's

in this group. You do not have to be a member of this church - or even a

Christian - they just have a ministry devoted to special needs children and

their families. I encourage everyone to look in to this type of group.

Lori Myers

Re: support groups for CHARGE

Hi Jen,

Ben's mom and I have talked several times...she is wonderful woman and mommy

and tonight when I checked his website and learned the latest, I was very sad.

They have been on my mind a lot lately. I know a shunt is not pleasant but if

that is what Ben needs, he will benefit greatly from it. But it is all soooo

frustrating because there doesn't appear to be a clear cut answer and I know

that is driving Amy nuts!!!

Personally I have received far more support from this CHARGE group than any

local group thus far. And especially since Amy is a bit homebound (like most of

us) because of Ben's care requirements, she probably would have a difficult time

attending meetings anyway. Since CHARGE is not all that common, there probably

won't be any local CHARGE groups...I know we are starting one for the state of

WA but so far we only have about 10 families. Perhaps there is a statewide

group? Or do you know if she attended a parent to parent support group meeting?

For some reason, I don't think she has yet. But that might be an idea...but I

imagine right now she just needs to get through this next stage with Ben and

then perhaps she will be more available to meeting new people and getting

support.

I am calling Amy tomorrow morning and hopefully she knows I am always just a

phone call away. So hard to be patient, but boy does this genetic disorder

teach you just that...we never know what is going to happen next!

Amy

balletgal1976 wrote:

Hi All,

I have not written in awhile, but today, my nephew Ben continued

spitting up at my sister-in-law's house and we are all very

concerned about him. It's not just formula, but stomach acid with a

yellowish color. The doctors just don't seem to know what is wrong

with him and tomorrow, he is going back to Children's Hospital for

an indefinite amount of time. I hope they run the tests and find

out what is wrong with him so we can find a solution since he

continues to do this almost every time he eats. He does have a

nissen (sp?) and they've checked his feeding tube out and some other

things and say those seem to be okay(I'm not sure....it seems like

the poor little guy has gone through so much).

My sister-in-law is worried b/c Ben has been

sleeping a lot more, kind of lethargic....just not his normal self.

They have been watching him because his head seems to be getting

larger than it should be and he is right on the border of possibly

having to have a shunt put in....I hope to God that there isn't

fluid on his brain. And if there is, I wish they would figure it out

asap and do what needs to be done.

Has anyone experienced this and if so, can you share with us? Also,

we were curious about support groups in the Mason, Ohio area for

parents of kids with CHARGE....or special needs children in

general.

My sister-in-law has been so strong through all of this. She is

true inspiration to our family and we are so proud of how well she

and her husband have been handling things, but today was hard

knowing that Ben would have to go back into the hospital for more

tests and possibly the shunt. I would like to be able to suggest a

support group b/c I can't even imagine the stress, frustration and

concern she has for Ben and it seems like right when we all think

things are going well, there is another setback. Ben is such a

fighter and if anyone can get through all of these things, it's

surely him. I just want to make sure my sister-in-law and brother-

in-law get to know other parents in the area that can understand

what they are going through since our family cannot totally relate.

I often feel helpless no matter what I try to do to help and wish I

could do more. No matter what, it never seems like enough and

probably never will.

Thanks for taking time to read and respond (if you can) to this

email. I have a feeling this will not be Ben's last time in the

hospital, so I want to make sure they have the support they need

from other people who understand their situation.

Jen

Aunt of Ben (8 months old, 6 months actual)

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[Guest guest]

Jen,

Ellen is right in that you can find some support groups through the social

services at the hospital. Another thing you can do is contact n Norbury.

She is the chair of the Family Services committee of the CHARGE Foundation.

Through the Foundation we have a list of families that have agreed to be

contacted by other families. She might be able to set you up with a few names

near

your area.

As you can see from this list it doesn't matter if the connections are

through people who have older children or the same age. We all help each other.

Contact her at n@...

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