Re: HELP

[Guest guest]

You absolutely are not alone! There are a whole group of us online from

around the world with children who have CHARGE. We are here to support one

another, answer questions, help find resources, etc. There are many other

families on this list dealing with trachs, Gtubes, heart issues, vision and

hearing deficits, etc.

If you have specific questions, fire away. There's surely someone among us

who will have some ideas or answers. In fact, some of the list members are

professionals who work with our children. For example, we have a PT,

deafblind specialist, genetic counselor, psychologist, etc.

My daughter will be 4 next week. She is darling, healthy, and bright. At

birth, we were crushed as we learned of all of her problems. We didn't know

if she could see or hear, she vomited constantly, was on a 24-hr tube feed

schedule, had immediate heart surgery as a newborn, etc. We were terrified.

As it turned out, she outgrew her reflux, she eats orally, she has managable

hearing and vision deficits, she has overcome her sensory issues, she never

had choanal atresia or a trach, etc.

The first year is tremendously overwhelming. Regardless of the outcome for

your son, things will improve either because some of his issues resolve or

are managed medically OR because you become better skilled at handling it

all. The kids on this list have a wide variety of skills, personalities,

and capabilities. But they and their families have a strong bond and many

things in common. If you are looking for answers and support, you've come

to the right place. Tell us more about your family and these past 7 weeks.

We're happy you have joined us.

Michele W

mom to Aubrie (almost 4) CHaRgE and (10)

note: we capitalize the letters in CHARGE to indicate which areas apply to

our child

HELP

> I have a son who was born on Sept,30,2001 he has C.H.A.R.G.E. syndrom.He

has the eye problems, the heart problems, and the nasal problems and he also

a reflux problem and has no thyroid or parap thyroid glands.At seven weeks

he has so far had one open heart surgery, a tracteostomy (sorry if I spelled

that wrong) and the reflux problem fixed and a G tube put in PLEASE someone

tell me my child is not the only living threw this ?????

>

>

>

> 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]

You are not alone!!

My daughter is now 6yrs. old - she was born with CHARGE - she had a

tracheostmy, Gtube & 2 heart surgeries before she was 2 mo. old - she

spent her first 2 mo. of her life in the ICU before we could take her

home - we've had tons of Dr. appt.'s & many hospital visits & it

hasn't been easy, but she's come a long way - she's now in

spec.ed.kindergarten & doing very well, (you can visit my website for

more info about my daughter, the URL is below)...

your son can get thru this & be a happy, playful kid - & we all will

be here for you, to help you thru the hard times & share the good

times - we all know what you're going thru, because we've been there

too!

Lori:Mom2CHARgEr,Cheyenne

www.geocities.com/the_dutch2000

> I have a son who was born on Sept,30,2001 he has C.H.A.R.G.E.

syndrom.He has the eye problems, the heart problems, and the nasal

problems and he also a reflux problem and has no thyroid or parap

thyroid glands.At seven weeks he has so far had one open heart

surgery, a tracteostomy (sorry if I spelled that wrong) and the

reflux problem fixed and a G tube put in PLEASE someone tell me my

child is not the only living threw this ?????

[Guest guest]

Hello there and welcome to CHARGEland...congratulations on your new baby

boy, what is his name? First of all, trust me, you are not the only one going

through this, although it's hard to believe other people have gone through it

when you're in the depths of it at the moment. My daughter and most all the

other children on this list have gone through that first few months of utter

horror, finding out day after day it seems that something else is wrong, surgery

after surgery, wondering what will ever become of this little bundle that you've

come to love so much?

Well, please believe me when I tell you it does not always stay like this.

Things will settle down, life will probably be somewhat different, but after all

these big surgeries are done, and therapy, etc gets set up, you will settle into

your own routine. It doesn't seem possible at this point that things will get

better, but they will. When I came on this list, my girl was only about 8 weeks

old or so and we were desperate for answers. The other, experienced moms &

dads told me the same thing, that things get easier. I sat there thinking

" they're nuts, they must not have had it as tough as we do or something " . But,

they were right, as usual...

My daughter Kennedy is a happy, healthy 3.5 year old who goes to preschool,

runs around, yaks my ear off some days, acts out like other kids, hugs me,

kisses me and tells me she loves me every night. Sure, some things are

different about her, but I wouldn't trade her for the world...

If you have any specific questions about ANYTHING, feel free to ask away,

that's what everyone is here for.

Remember, it WILL get better....

Hugs,

Weir

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

New Brunswick, Canada

Visit the " Weir homepage " at: http://www.geocities.com/kawfolks

ICQ #1426476

" When the tide of life turns against you and the current upsets your boat, don't

waste your tears on what might have been, just turn on your back and float. "

-Anonymous

HELP

I have a son who was born on Sept,30,2001 he has C.H.A.R.G.E. syndrom.He has

the eye problems, the heart problems, and the nasal problems and he also a

reflux problem and has no thyroid or parap thyroid glands.At seven weeks he has

so far had one open heart surgery, a tracteostomy (sorry if I spelled that

wrong) and the reflux problem fixed and a G tube put in PLEASE someone tell me

my child is not the only living threw this ?????

[Guest guest]

Thank you all for answering me !!!!!! His name is .He

has C.H.A.r.g.e. Its so nice to find people who know exactly what I am

going threw.I am so sick of people saying he will be perfectly normal by

the time he is five Maybe he will be maybe he wont I wouldn't trade him

for the world anyways.I have a million questions just cant sort them out

right now.He was supposed to come home next week but desided to have a

episode of not breathing sunday morning (mucus plug in his trac they

think) so he is back on the vent for now and who knows when he will get

to come home now (not that I want him home before he is ready)

My main question for right now is how do all you people keep your

sanity threw all this !!!!!!And how do you get some one to help you

coordinate all the things wrong so you can under stand it?

You are all right for a while there it seemed everyday they were

finding some thing new wrong.This has been a nightmare since he was born

I keep question weather its fair to him but then I think he doesn't know

life is supposed to be different yet then when he smiles at me I know

its fair and the right thing to do there has been three times now they

said he should of been dead but he refuses to be All I want for him is

to have a happy life .I keep telling him the world is all wrong he is

all right !!!!!!

Thank you all for letting me remember they are not (the docs)picking

on my child and that there is hope

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

[Guest guest]

> I have a son who was born on Sept,30,2001 he has C.H.A.R.G.E.

>syndrom.

Welcome to charge land! Im Chantelle (a grown up) (and very goofy at

the moment... no comments...) charger. (CHARGEr is just an

affectionat name given to all kids with charge syndrome.

>He has the eye problems,

Me too, I have colemboma in both eyes. My left eye is worse then my

right eye. I can see normaly in my right eye (with my glasses... wich

I need to get...)

>the heart problems,

I had many open hart surgeries to fix my patent ductus arteriosus. I

also had blood flowing the rong way or something like that. Anyways I

do have an enlarged left ventracle. I had my first operation shortly

after birth. I had one more before I turned 2, then one at 3 or 4 and

6.

>and the nasal problems

I was born with bilateral choanal atresia. I think it was the bony

kind, but I only recently learned there were 2 types and I dont know

what the differences are anyways. All it said on my records that I

had atresia of the croanie (hehe I KNOW I spelled that one

wrong )

>and he also a reflux problem and has no thyroid or parap thyroid

>glands.At seven weeks he has so far had one open heart surgery, a

>tracteostomy (sorry if I spelled that wrong) and the reflux problem

>fixed and a G tube put in PLEASE someone tell me my child is not the

>only living threw this ?????

You are not the only one who has a child with these issues, though

its easy to feel so alone! I know I thought I was the only charge

person in the wold or something. I felt quite alone till I found this

mailing list! Have to say the ppl here are totaly awsome and

supportive! Oh and dont worry bout spelling, grammer, punctuation or

anything for that matter... cause spelling dosent count here! (heck

not all of us even had english as a first language, so writting in

english is not easy.)

Just ask anything, we are all here to help you out! thats what this

list is for!

By the way, where are you from anyway?

Welcome to CHARGEland

Love

Chantelle

[Guest guest]

>I am so sick of people saying he will be perfectly normal by

> the time he is five

Normal? whats that? Here is what the dictionary says... nor·mal

(nôrml)

adj.

Conforming with, adhering to, or constituting a norm, standard,

pattern, level, or type; typical:

....Awww thats boring! Why would anyone want to be " normal " ? I dont

LIKE conforming with, adhering to, or constituting a norm, standard,

pattern, level, or type... therefor... I dont WANT to be typical

anyway! (you will probably soon find out I can be very stubborn! lol)

>I have a million questions just cant sort them out

> right now.

Well with all the ppl here, im sure many ppl can answere your

questions.

> My main question for right now is how do all you people keep your

> sanity threw all this !!!!!

sanity? What sanity (mwa hahaha!)

>I keep telling him the world is all wrong he is

> all right !!!!!!

awwww sweet!

Well take care and ask us anything!

Chantelle

[Guest guest]

Congratulations on the birth of you son!

He is sure to bring you much happiness in the days to

come....sometimes just a smile is all you really need to make it all

better.--

I'm sure you will hear this alot from this list but the first year is

the WORST. You and your family and new baby will be put through

trials that you never imagined but you will come out the other side

stronger, wiser and with a HUGE appreciation for all that you can be

thankful for. This list can be a life-saver for you and also the

foundation can offer you much support in the way of the Manual

(available for only 20$) but also in in helping you make connections

in your area to other families who have a CHARGE child.

Please write more when you are able and let us know about the rest of

your family and details like where are you located and any specific

help that you may need to get through these first few months.

I remember that Nicolas (now 4) spent his first Thanksgiving in the

hospital also. He was born 9-26-97 so we are into this awhile now. It

was hard to not be able to hold and comfort him while he was on the

vent but soon he will never seem to leave your arms. Nic is doing

great almost all medical issues have cleared up and now he attends

preschool 5 days a week and LOVES it.

Take care and try to find somethinf to be thankful for this holiday

season.

L. Mom to Nicolas CHARgE (4) and Josh (2)

Eugene Oregon

- In CHARGE@y..., bigheadinthesky@w... wrote:

> Thank you all for answering me !!!!!! His name is

.He

> has C.H.A.r.g.e. Its so nice to find people who know exactly what I

am

> going threw.I am so sick of people saying he will be perfectly

normal by

> the time he is five Maybe he will be maybe he wont I wouldn't trade

him

> for the world anyways.I have a million questions just cant sort

them out

> right now.He was supposed to come home next week but desided to

have a

> episode of not breathing sunday morning (mucus plug in his trac they

> think) so he is back on the vent for now and who knows when he will

get

> to come home now (not that I want him home before he is ready)

> My main question for right now is how do all you people keep your

> sanity threw all this !!!!!!And how do you get some one to help you

> coordinate all the things wrong so you can under stand it?

> You are all right for a while there it seemed everyday they were

> finding some thing new wrong.This has been a nightmare since he was

born

> I keep question weather its fair to him but then I think he doesn't

know

> life is supposed to be different yet then when he smiles at me I

know

> its fair and the right thing to do there has been three times now

they

> said he should of been dead but he refuses to be All I want for him

is

> to have a happy life .I keep telling him the world is all wrong he

is

> all right !!!!!!

> Thank you all for letting me remember they are not (the docs)

picking

> on my child and that there is hope

>

>

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

[Guest guest]

,

Welcome you, Wee and the rest of the family !!! You all

are now officially part of our family. A pretty big family it is too,

over 400 of us from all over the world here.

Ask us anything, if we don't know the answer (and prolly will) we

can head you in the right direction to find it. What you need is a

case manager that is willng to learn about CHARGE, whether that

be a SW, RN or Pediatrician or Genetcist it really doesn't matter

as long as they are ready to learn and advocate for . One

thing I may suggest is that you get the CHARGE Manual from the

Foundation. It's divided up into sections that cover the areas of

CHARGE and each section has info for parents and info for docs.

It's $20 and you can get it by emailing n Norbury at

marion@... tons of great info in it.

Hmmm.. How do we keep our sanity ?? I think I left mine at the

hospital nine and half years ago LOL Seriously, you take it one

day at a time, sometimes one hour at a time, sometimes one

minute at a time. And remember we are all only a keyboard away,

if you have a question, want to vent, have a pity party with those

that understand, don't hesitate, grab that keyboard. We have all

done all those things.

Aari is reading this over my shoulder and said to tell 'Hi'

from him.

Casey

Mom to Dawn 22 HH, Ken 12 ADHD, 9 CHARGE

ICQ 728514 AIM ZeeCasey

CHARGE Web Page:

http://www.geocities.com/Heartland/1220