Re: How do you get answers??

[Guest guest]

,

Just want to let you know that there is a lot to " absorb " early

on, hang in there!!!!!! We have a (13.5 mo.) daughter, ( Ann when

naughty is our 1st child, we've been married almost 15yrs:))

has all the acronyms of CHARGE with a lot of minor characteristics as well.

comes with a lot of baggage, if you know what I mean! She is

absolutely worth every bit of it!!!!!!! These kiddos are so precious &

determined etc. has brought us so much love and happiness!! She really

didn't smile at us until she was about 11 mo. old We often asked her

specialist's, why????? No one would give us a straight answer here either.

We got her involved with an in-home OT in Sept. which has helped A LOT! I

would definitely recommend therapy as soon as possible. She loves to smile

now & it's wonderful!!!

We have found, in the past year; that sometimes it does take

awhile to get answers. Don't give in, be persistent! We have needed to travel

a bit to get more specialized care. You may want to consider getting second

opinions. At one point our local docs felt that needed a trach. We

didn't really believe a trach was necessary, so we decided to get another ENT

involved, hence the glossopexy We've had many things checked twice, by

different specialists. You will find the ones that are right for you, it may

take some time though.

I'm very glad you found this list early on, these people have

great advice & also will offer a shoulder to cry on! We are new to the list,

just the past few weeks; I WISH we would have known about it much sooner!

Best wishes,

Jan mom to (13.5 mo). CHARGEr

wife to

(just wanted to share our 2 cents worth)

[Guest guest]

,

Sue was reading this email and said that you should make sure the doesn't

have a kidney problem as well. When they did na's Ultrasound of her

overies and reproductive organs, they said that with reproductive organ problems

there is a good chance that the kidneys could be involved as well, because the

kidneys and the reproductive organs form at the same time. You had said that

's testies are undesended. Just a thought, they should do a ultrasound of

the kidneys if they haven't done on yet....

Campanale

johncampanale@...

http://members.truepath.com/hedgebuilder0074/brianna.html

http://members.truepath.com/hedgebuilder0074/newbrianna.html

<><><><><><><><><><><><><><><><><><><><><><>

HEDGEBUILDERS---Protecting YOUR family and you......

www.hedge.org/sr/0074.htm

" Making the Internet Safe for Work and Play "

<><><><><><><><><><><><><><><><><><><><><><>

How do you get answers??

Now billy is not coming home till monday (was supposed to today.....they

are still playing with his diuretic doses and I would just as soon he

doesn't come home and have congestive heart failure the next day so

thats fine with me ) how do you get the doctors to answer your questions

they love to say I will go find out and never come back!!!!!are they

scared I am going to freak out if I don't like the answer?yesterday I

asked if he has testicles (they are not descended ) he is missing other

glands and if he has none what do we do about it the doctors said well

some times in premees they don't come down till later I said HUH ??? he

was born at 41 weeks so he says oh well I will go find out and leaves

and never comes back!! I am so sick of that crap !!!

http://community.webtv.net/bigheadinthesky/justopenit

[Guest guest]

Great advice Jan, they are worth it, even if they can be frustrating (like any

kid I suppose!) at times....

Hang in

Mom to Kennedy 3.5yr old CHARGEr, 12, 10, and wife to Graeme

New Brunswick, Canada

Visit the Weir Homepage: http://www.geocities.com/kawfolks

Re: How do you get answers??

,

Just want to let you know that there is a lot to " absorb " early

on, hang in there!!!!!! We have a (13.5 mo.) daughter, ( Ann when

naughty is our 1st child, we've been married almost 15yrs:))

has all the acronyms of CHARGE with a lot of minor characteristics as well.

comes with a lot of baggage, if you know what I mean! She is

absolutely worth every bit of it!!!!!!! These kiddos are so precious &

determined etc. has brought us so much love and happiness!! She really

didn't smile at us until she was about 11 mo. old We often asked her

specialist's, why????? No one would give us a straight answer here either.

We got her involved with an in-home OT in Sept. which has helped A LOT! I

would definitely recommend therapy as soon as possible. She loves to smile

now & it's wonderful!!!

We have found, in the past year; that sometimes it does take

awhile to get answers. Don't give in, be persistent! We have needed to travel

a bit to get more specialized care. You may want to consider getting second

opinions. At one point our local docs felt that needed a trach. We

didn't really believe a trach was necessary, so we decided to get another ENT

involved, hence the glossopexy We've had many things checked twice, by

different specialists. You will find the ones that are right for you, it may

take some time though.

I'm very glad you found this list early on, these people have

great advice & also will offer a shoulder to cry on! We are new to the list,

just the past few weeks; I WISH we would have known about it much sooner!

Best wishes,

Jan mom to (13.5 mo). CHARGEr

wife to

(just wanted to share our 2 cents worth)

[Guest guest]

Billies kidneys have been checked over and over because he was oxygen

deprived at birth and had some minor problems with them for the first 24

hours (along with a couple seizures ) (both problems resolved them

selves)but if they don't have an answer tomorrow they are going to do

one more ultra sound to look for them (his testicles) and will have them

check his kidneys again as well as long as they are there thank you

http://community.webtv.net/bigheadinthesky/justopenit

[Guest guest]

The sugeries he has had so far Including trach. had to be done his

heart is not strong enuogh to tolerate the nasel surgey There really

was no time for a second opion He was losing weight fast because of the

reflux problem and it has worked he is growing not gaining weight as

fast as they would like but he has grown 3 inches in length they seem to

think getting him home in a " normal " setting will help that

But before the next round of surgies I will be much better informed

believe me I already am I am wondering just how do they fix their

noses? how many sugeries does it take He has a membrane covering the

back (no bone) and do they do the heart first ?he just has a shunt in

his heart now (looks very weird on ultra sound and sounds like a washing

machine)

http://community.webtv.net/bigheadinthesky/justopenit

[Guest guest]

, I never properly welcomed you to the list. Sorry. Sometimes so many

e-mails come at once it's hard to keep up. Welcome it's nice to have you

here. You seem so well informed. As everyone has said the first year is

the toughest. Waiting is hard. We were blessed because even though Meri

gave us some real scares, there was never any serious medical complications.

As far a choanal atresia goes, I think it's a good thing when there is no

bone in the choanae. I know Meri's surgery was longer because she had a

thick boney plate. I don't think the surgery is as bad. They tried to

repair Meri's 3 times with no luck as of yet. I wont take her back until

things settle down in New York City. Meri's heart has not required surgery

yet. I guess which ever is the most essential surgery will get done first.

Audrey Dwyer, Mom to -10, Meredith-8(CHARGE), -7, and wife to

Bill.

Re: How do you get answers??

> The sugeries he has had so far Including trach. had to be done his

> heart is not strong enuogh to tolerate the nasel surgey There really

> was no time for a second opion He was losing weight fast because of the

> reflux problem and it has worked he is growing not gaining weight as

> fast as they would like but he has grown 3 inches in length they seem to

> think getting him home in a " normal " setting will help that

> But before the next round of surgies I will be much better informed

> believe me I already am I am wondering just how do they fix their

> noses? how many sugeries does it take He has a membrane covering the

> back (no bone) and do they do the heart first ?he just has a shunt in

> his heart now (looks very weird on ultra sound and sounds like a washing

> machine)

>

>

> http://community.webtv.net/bigheadinthesky/justopenit

>

>

>

>

>

> Membership of this email support groups 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 CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 6th International CHARGE Syndrome Conference, Cleveland, Ohio,

> July 25-27, 2003. Information will be available at our website

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

>

>

>

[Guest guest]

Hi ,

I do need to get back to you, because I'm concerned!!!

It's like giving birth, having your babe whisked away, & the next few

seconds, hours & months are very crucial!!!!! As a first time mom,(or for

any mom) it is really hard to except. Those first few days, we were

delirious!!!!!! So many test's, pricks etc.( & for , surgeries) It is

very hard, it is very hard to see our little ones go through " all of that

extra stuff " We have shed many a tear, in the past 13.5 mo.'s. It is not

easy, but it is a wonderful challenge just a thought here, I was so

scared to become a mom under a " normal " situation; how were we going to

handle anything extra????????? We are surviving, but it's a whole new ball

game !!!!!!! We now make & break the rules!!!!!!!!!!

I do understand that medical issues definitely do come first,

it's a must!!!!!! First things first, let's get bigger & stronger ))

We don't want him to be stressed, in any way.................

My thoughts earlier, on getting second opinions; is just

something to think about (I know that there is way too much at this time)

hearing, vision, kidney's,growth etc. etc. let's get past major medical

first!!!

Jan mom to ( 13.5 mo.) CHARGEr

wife to

" Home alway's sounds way too good when your'e in the

hospital, be patient & comfortable before you do so " We do not have in-home

nursing, I'd rather be a mom, not a nurse.

[Guest guest]

thank you Yes before he has any more surgeries I will be getting second

opinions except for the heart surgery I was told by my doctor (my obgyn

calls the hosp. to check on billy regularly they give him info straight

no sugar added and he tells me and we compare) billy had the most

complicated tetrology of fallot they had ever seen and his cardiac

surgeon is very confident he can fix it (I met a mom up there who son

was born missing two chambers in his heart the same surgeon is

reconstructing it and they keep flying kids in from all over for him to

" fix "

The pediatrictions we have decided I should use I hear are very good

at getting info for parents I haven't met them yet.... but I hear very

good things about them from many parents with complicated children I

haven't met them yet cause we just decided I should use one closer to my

home I was going to us a resident who is getting ready to open her own

practice but we decided an hour drive in winter for a cold is a little

much (even though she is very very attached to my child I think she

wanted to steal him away and make him her own heheh!)so hope fully they

will be great allies in this search for info!!!!! Thank you all for

pointing out the fact I DONT HAVE TO USE PEOPLE WHO DONT SEEM TO BE

HELPING ME!!!!!!! I DO HAVE SOME CHOICES MARY