Introduction

[Guest guest]

Welcome Becky! I don't know that I have much advice, just a shoulder to lean on.

I am a single mom (who thankfully works at home) so I know the isolation and

exhaustion that you feel. One thing that has helped me a little is seeing that I

am not " failing " at taking care of the house. I am doing a " good enough " job. As

long as things aren't growing on the dishes in the sink and we are not

completely out of clean clothes, then it's good enough. If someone wants to come

to my house, then I hope it is to see me, not my house. On a bad day, I have to

clear off a place on the couch for them to sit...HaHa. I too stay up very late

just for some alone time. It is taking it's toll. But, I am not sure NOT taking

that time would be healthier. Do you qualify for any respite? I wish I could be

of more help, but just know you are not alone and you can vent here anytime.

Mom to Nick 3.5, autistic, asthma, food allergies, escape artist

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

[Guest guest]

> Good Morning....or for those that it is never that way...MORNING,

Mornin' )

> We are Bob & Becky and we live in Ohio.

Hello! I'm from Ohio too. Inbetween Dayton & Cincinnati.

> recieves OT PT and speech at school and we get him outside

> services in sensory, speech and Pt at our local hospital. He

currently takes meds for siezures (Depakote and Lamictal) as well as

seraquel and prozac. We have taken him off respardal this past summer.

>

My son, (6 NT) was just weaned off Depakote this spring. He

hasn't had a seizure in over 2 years now, but I haven't forgotten how

scary that was to watch. , (10 autistic PDD) has been on Prozac

for about 2 years now. We tried Paxil first but she might as well of

been taking water for all the good it did. The Prozac is helping. She

doesn't bite her nails until they bleed anymore, but she still has

problems with obsessive thoughts. On a bad day, she will repeat

questions over and over again.

> attends a MH class in which he is one of 6 students with a

teacher, 1 FT aid and 1 PT aid. He loves school and would go year

around if he could. God know I which I could make that happen for him!

>

You and me both! I would love for to go year round. She would

be so much calmer.

I think a lot of us do the tag team parenting. Though it took a LONG

time for my husband to understand why I needed help in the evenings

when I wasn't working. It took him a long time to come to grips with

's disabilities though. He finally pulled his head out of the

sand about 2-3 years ago.

> We really dont have time for each other at all. I know this is

common with all of us. 2 of our adult kids have watched from

time to time and do a great job with him. But they both have families

and live of their own now so I am less comfrontable calling then to

watch so we can get away. They do help fill in when I have a

appts for or one of the foster kids.

>

Someone else mentioned respite care, being in Ohio, you should have

access to respite care, but that depends on how many foster kids you

have and whether or not you can afford a sitter for them while you

take some time for yourselves.

Every year my husband takes a hunting trip for 7 to 10 days. He

rarely calls and checks on us, he just goes and tunes out the world.

He's done this since we were married and I didn't realize how much I

resented it until a few years ago. I don't mind that he takes time

for himself, I understand the need completely. What I resented was my

never having time for me. Finally, I put my foot down, planned a trip

to the NY Ren faire and went for 4 days with a friend. Money has been

tight so I haven't been able to do that again this year, but I will

go to the Ohio Ren Faire at least twice before it's over. I also take

the time to go to movies on occasion with friends or by myself. I

also leave all three kids at home to go grocery shopping. At first,

Mike didn't think much of my leaving him with the kids and he griped

a LOT about having to babysit. But when he slowly started to realize

that I was a much nicer person to be around when I had a stress

break, then he started to offer to keep the kids so I could go do

whatever I needed or wanted to do.

We all need some down time, it's just not possible to be super human

no matter how hard we try or how much we believe it's expected of us.

It sounds like you are facing some serious life long problems with

. It's even more important for you and your husband to find time

for yourselves and each other.

It's not like my home is well balanced, it's not. But we're getting

better...slowly...one tiny step at a time.

Tina

[Guest guest]

Hi Becky!

Welcome!

You sure sound like you have your hands full! A lot of us have found

Clonidine to be a God send for kids who don't sleep. Also, there are quite

a few of us who take antidepressants ourselves. I found that helped me

sleep when I couldn't shut off my brain when I went to bed. It also helped

me deal with the fight I was having with my school district over my younger

son. Still not solved, but hopefully will be soon.

Why did you discontinue the Resperdol? I was just wondering since you said

more behaviors have occurred since it was stopped.

Sue in MI

Married to: Mark

Mom to: 12, HFA

9, HFA, ADD

IM and AOL - smg5862

[Guest guest]

Welcome to the group Becky. I hope you like it here. I am Amie. I have 2

babies. Karson, who is 3 and PDD and Peyton, who is 19 mons and NT. We live in

Florida. Nice to meet you. I hope you love it here as much as I do. Everyone

on this list is very helpful. I have learned so much in the short time I have

been a member:). Amie

introduction

Good Morning....or for those that it is never that way...MORNING,

We are Bob & Becky and we live in Ohio. We have 3 adult kids and are trying

to adopt our 12 yr . started out as our foster child and we took

legal custody 9 years ago of him. More on the TRYING to adopt nightmare in a

diferent post. has Epilpesy, cerbal palsy, adhd, mpderate- severe MR,

and PPD. recieves OT PT and speech at school and we get him outside

services in sensory, speech and Pt at our local hospital. He currently takes

meds for siezures (Depakote and Lamictal) as well as seraquel and prozac. We

have taken him off respardal this past summer.

Since taking him off the respardal his autisic behaviors jump out big time.

With receptive and expressive speech skills between 3.6 - 4.9 yr old his

talking is always limited in topic...but he never stops talking...we are see

alot more of being stuck on one subject and not being able to move past

it....all this past summer is has been traffic light and raod construction.

And it is the same 5 sentencces all day long. He is back to self injurous

behaviors..biting self in his arm and sometimes legs, biting nails till they

are almost none and bleeding, picking at his knuckles till they are rare and

last week started with pushing on his eyes saying he is going to pop them

off . He argues all the time, crys easy and throwing tantrums big time..we

call these melt downs.

attends a MH class in which he is one of 6 students with a teacher, 1

FT aid and 1 PT aid. He loves school and would go year around if he could.

God know I which I could make that happen for him!

I am a stay at home mom and Bob works as a bricklayer foreman 2 hours from

home. We do what we call tag team parenting. By the time Bobs gets home I am

completely stressed so he takes over with . He is a great father! But

lately I can see he is getting stressed to with the behaviors.

We really dont have time for each other at all. I know this is common with

all of us. 2 of our adult kids have watched from time to time and do a

great job with him. But they both have families and live of their own now so

I am less comfrontable calling then to watch so we can get away. They

do help fill in when I have a appts for or one of the foster kids.

The past year I have been staying up till 3AM and sometime later. Not always

out of choice. I am just so tense sleep is just not something that will

happen. This is also the only time I have to read books or research on the

net.

I am so very tired and I know Bob is tired of sleeping alone. But I am just

to stressed to go to sleep. Bob knows and says he understands. But I feel at

times he is taking this personally. I have tired to explain to him that I am

handling everything here, the house...and failing on it the past couple of

months, laundry...also failing...grocery, 97% of the cooking, making appts.

for Drs and councelors and making sure everybody gets to those appts with

all the right info., paying the bills and dealing with the nasty calls when

they dont get paid. How do the rest of you handle all this? I have

absolutely NO time for me and havent for years. Bob gets out and hunts and

is in a bass club so he gets out regularly. also he has 4 hours monday -

friday in the truck driving home not dealing with these things.

ok I have rambled far more than i wanted to. Sorry so long and sorry if I am

not makingmuch sense. Any and all suggests will help

Thnaks

Becky

_________________________________________________________________

Send and receive Hotmail on your mobile device: http://mobile.msn.com

[Guest guest]

Hi Becky,

Welcome to a great group of supportive friends.

I'm Mimi, married to for 9 years and sahm to

Hannah, 8 (NT) and , 6 (PDD).

is pretty much non-verbal but starting to speak

a bit more..he is often up around 3 a.m..the kid is a

ball of energy..and he is on risperdal! He attends a

special ed school and is in an ABA based program..he

also gets 8 hours of ABA at home.

Sounds like you have your hands full with ..I

hope everything works out with you with the adoption.

I look forward to getting to know you and your family.

Mimi

--- Becca Griggs wrote:

> Good Morning....or for those that it is never that

> way...MORNING,

>

> We are Bob & Becky and we live in Ohio. We have 3

> adult kids and are trying

> to adopt our 12 yr . started out as our

> foster child and we took

> legal custody 9 years ago of him. More on the TRYING

> to adopt nightmare in a

> diferent post. has Epilpesy, cerbal palsy,

> adhd, mpderate- severe MR,

> and PPD. recieves OT PT and speech at school

> and we get him outside

> services in sensory, speech and Pt at our local

> hospital. He currently takes

> meds for siezures (Depakote and Lamictal) as well as

> seraquel and prozac. We

> have taken him off respardal this past summer.

>

> Since taking him off the respardal his autisic

> behaviors jump out big time.

> With receptive and expressive speech skills between

> 3.6 - 4.9 yr old his

> talking is always limited in topic...but he never

> stops talking...we are see

> alot more of being stuck on one subject and not

> being able to move past

> it....all this past summer is has been traffic light

> and raod construction.

> And it is the same 5 sentencces all day long. He is

> back to self injurous

> behaviors..biting self in his arm and sometimes

> legs, biting nails till they

> are almost none and bleeding, picking at his

> knuckles till they are rare and

> last week started with pushing on his eyes saying he

> is going to pop them

> off . He argues all the time, crys easy and throwing

> tantrums big time..we

> call these melt downs.

>

> attends a MH class in which he is one of 6

> students with a teacher, 1

> FT aid and 1 PT aid. He loves school and would go

> year around if he could.

> God know I which I could make that happen for him!

>

> I am a stay at home mom and Bob works as a

> bricklayer foreman 2 hours from

> home. We do what we call tag team parenting. By the

> time Bobs gets home I am

> completely stressed so he takes over with . He

> is a great father! But

> lately I can see he is getting stressed to with the

> behaviors.

>

> We really dont have time for each other at all. I

> know this is common with

> all of us. 2 of our adult kids have watched

> from time to time and do a

> great job with him. But they both have families and

> live of their own now so

> I am less comfrontable calling then to watch

> so we can get away. They

> do help fill in when I have a appts for or one

> of the foster kids.

>

> The past year I have been staying up till 3AM and

> sometime later. Not always

> out of choice. I am just so tense sleep is just not

> something that will

> happen. This is also the only time I have to read

> books or research on the

> net.

>

> I am so very tired and I know Bob is tired of

> sleeping alone. But I am just

> to stressed to go to sleep. Bob knows and says he

> understands. But I feel at

> times he is taking this personally. I have tired to

> explain to him that I am

> handling everything here, the house...and failing on

> it the past couple of

> months, laundry...also failing...grocery, 97% of the

> cooking, making appts.

> for Drs and councelors and making sure everybody

> gets to those appts with

> all the right info., paying the bills and dealing

> with the nasty calls when

> they dont get paid. How do the rest of you handle

> all this? I have

> absolutely NO time for me and havent for years. Bob

> gets out and hunts and

> is in a bass club so he gets out regularly. also he

> has 4 hours monday -

> friday in the truck driving home not dealing with

> these things.

>

> ok I have rambled far more than i wanted to. Sorry

> so long and sorry if I am

> not makingmuch sense. Any and all suggests will help

>

> Thnaks

> Becky

>

>

_________________________________________________________________

> Send and receive Hotmail on your mobile device:

> http://mobile.msn.com

>

>

__________________________________________________

[Guest guest]

Hello Becca,

I'm way way behind in reading posts, but I just wanted to jump in and welcome

you and all the other new people to the list.

I'm Tuna (aka Louise), married to Doug and mom to (8, ASD) and

(almost 4, NT). We live in northern Alberta. attends a regular Grade 2

class with a

full-time aide and pull-outs. Doug and I tag-team parent also. He's a

teacher/firefighter and when he gets home I usually give him the kids for a

couple hours so I can mellow out for a while. This usually means yoga and/or

computer time. I've had trouble sleeping too, but yoga and meditation have

helped. Keeping a journal helps too. Sometimes just pouring all my thoughts and

worries into my journal, or writing to P_A helps me let go of things long enough

to fall asleep. There are still many nights where I'm awake till 2 or 3.

Glad you joined us, jump in any time.

Tuna

*****Get more from the Web. FREE MSN Explorer download :

http://explorer.msn.com

[Guest guest]

This is SO cool, Tuna....

I wish I could start something like that!

Penny

>>>>>This usually means yoga and/or computer time. I've had trouble sleeping

too, but yoga and meditation have helped. Keeping a journal helps too.

Sometimes just pouring all my thoughts and worries into my journal, or

writing to P_A helps me let go of things long enough to fall asleep.

<<<<<<<

[Guest guest]

Welcome to the group, Amy! I really hope everything works out for you this time

and you will be changing diapers very soon!

Introduction

I have been reading for a while and decided today to introduce myslef

to all of you. I am Amy 34 and have been married for 15 years with a

son 12 a son 9 adn a little girl 5.

I had my TR Oct 4, 2001 with Dr.Berger and have 6 and 7 tube lenghts.

Had a HSG Dec 2001 showing right side blocked. Got pregnnat after a

IUI and loss the bbay early in Sept. Had second HSG to make sure ONE

tube was okay..and the RE pushed a tad harder then the GYN DR did and

the Right tube came open..So now I have both open...That was a nice

suprise.

I am cd 8 in a medicated gonal f IUI and go tomorrow for a scan and

blood work to see when I can trigger...

Seem to be feeling very negitive lately and thought maybe reaching out

to a new TR group may help me some.. I hate that I let myslef get so

negitive about things...But the dreaded..it will never happen thought

sits in my stomache often lately...

Okay no more pity party for me...Just wanted to say hello and tell you

a little about myslef..

Amy B

[Guest guest]

Welcome to the group, Amy! I really hope everything works out for you this time

and you will be changing diapers very soon!

Introduction

I have been reading for a while and decided today to introduce myslef

to all of you. I am Amy 34 and have been married for 15 years with a

son 12 a son 9 adn a little girl 5.

I had my TR Oct 4, 2001 with Dr.Berger and have 6 and 7 tube lenghts.

Had a HSG Dec 2001 showing right side blocked. Got pregnnat after a

IUI and loss the bbay early in Sept. Had second HSG to make sure ONE

tube was okay..and the RE pushed a tad harder then the GYN DR did and

the Right tube came open..So now I have both open...That was a nice

suprise.

I am cd 8 in a medicated gonal f IUI and go tomorrow for a scan and

blood work to see when I can trigger...

Seem to be feeling very negitive lately and thought maybe reaching out

to a new TR group may help me some.. I hate that I let myslef get so

negitive about things...But the dreaded..it will never happen thought

sits in my stomache often lately...

Okay no more pity party for me...Just wanted to say hello and tell you

a little about myslef..

Amy B

[Guest guest]

Welcome to the group, Amy! I really hope everything works out for you this time

and you will be changing diapers very soon!

Introduction

I have been reading for a while and decided today to introduce myslef

to all of you. I am Amy 34 and have been married for 15 years with a

son 12 a son 9 adn a little girl 5.

I had my TR Oct 4, 2001 with Dr.Berger and have 6 and 7 tube lenghts.

Had a HSG Dec 2001 showing right side blocked. Got pregnnat after a

IUI and loss the bbay early in Sept. Had second HSG to make sure ONE

tube was okay..and the RE pushed a tad harder then the GYN DR did and

the Right tube came open..So now I have both open...That was a nice

suprise.

I am cd 8 in a medicated gonal f IUI and go tomorrow for a scan and

blood work to see when I can trigger...

Seem to be feeling very negitive lately and thought maybe reaching out

to a new TR group may help me some.. I hate that I let myslef get so

negitive about things...But the dreaded..it will never happen thought

sits in my stomache often lately...

Okay no more pity party for me...Just wanted to say hello and tell you

a little about myslef..

Amy B

[Guest guest]

Welcome ,

I hope you find support here. You can learn so much from everyone's sharing.

I have an 11 yr. old girl Mandy.We have all been through alot.We welcome you.

I too just recently found the group. You are lucky to have the support early

on.

Our best to your family.

Diane,

Mandy,11 repaired asd,cleft lip & pallet,illiostomy,Gtube fed till 7, Small

in size, Ear anomalies, severe hear loss, facial palsy, Behavior.Doing well

now!

Haley,sis 8,

Joe, dad. Illinois

[Guest guest]

, Whitney's Trach was placed on 11-16-04. She also had ASD, AV canal,

and pulmonary stinosis, which has all been repaired. Yes, that is my

Whitney on the picture board. We think she is pretty cute as well. I need to

send

in a more recent picture of her, as that was her 1 year ago. I will look

forward to seeing Hunter's picture. The CHARGE syndrome conference is in Miami

this year, we are hoping to go. Will you be attending?

DeAnn Wells, Mom to Austin 9, 6, and CHARgE Whitney 19 Months

[Guest guest]

Hi !

I just wanted to welcome you to the list! Hunter sounds like a sweet baby -

and he definitely sounds like a CHARGEr! You have found great resources

here... everyone is so helpful - - so much support and wisdom!

Welcome!

Kristi

mommy to Gracelyn " Gracie " 23 months

[Guest guest]

DeAnn,

Hunter was two weeks early (my birthday is July 29 so he was my

present)Hunter didn't have the coanol atrisia so it is more

understandable to me now how Whitney was diagonosed so early. Hunter

was 7 months old before we actually got to talk to a geneticist

(Bloodwork was sent off the first week of life which came back normal

but we don't have a local geneticist which is why hunter was so old

when he saw him) What Heart defect does whitney have? Hunter had an

ASD and it was causing all of his weight gaining problems He was

barely 13 pounds at 1 year old. THe hole in his heart was closed a

few days before his first birthday and boy did it make a difference

in his gaining weight he gained 6 pounds in two months he is now 25

pounds but believe me I know your frustration with her weight gain. I

have read that 4 of the 6 main things is enough also and Hunter has 5

of them so it is more than likely what he has. ©Coloboma of the

optic nerve (one is larger than the other) (H)ASD ®he is severly

developmentally delayed and used to be growth delayed (G)he was born

without an opening to his anus and (E)malformed ears and hearing

loss. Hunter sits very well now but he won't stand and doesn't crawl

or scoot. We are in the process of getting him leg braces so he can

learn to stand and eventually walk. Is your whitney the whitney on

the chargepictures page? If so she is beautiful (If not I'm sure she

is beautiful). Hunters ear is very similar to hers. I have sent

Hunters picture in so keep an eye out for it. Hunter also has a

trache (placed 11-11-04) and a condition called Craniosynostosis so I

belong to a few other support boards and I love them. I am sure this

one will be the same. It is so theraputic just to talk to others who

know what you are going through.

[Guest guest]

,

Welcome to both you & Hunter! I look forward to hearing more about him. You

may want to consider having him tested for the CHD7 microdeletion for CHARGE,

which is probably news to your geneticist as the discovery of this gene did not

happen until just last year.

Weir

lisaweir@...

http://ca.geocities.com/weirfamilyrogers

[Guest guest]

Hello, ! Yes, Hunter sounds enough like CHARGE to me! If you

could take a picture of him and especially his ears, you might be able

to email them to Meg Hefner, the genetic counselor with the CHARGE

Foundation, for some input. She's seen so many kids with CHARGE that

she's quite good at identifying them. Even without a definite

diagnosis, he certainly has the same issues you will find discussed

here, so hopefully you will find answers and support.

We are very much a family here. My daugher with CHARGE is 7 yrs old.

One way I reconciled the whole thing for myself was to think of her as

having 3 parents -- she has genetic material from me and my husband as

well as genetic material from CHARGE. That explains why she has so much

in common with her CHARGE peers/siblings -- as much as she does with her

natural brother! Since I cherish the CHARGE family for their

contribution to my sanity and Aubrie's success, I am more than happy to

have them so entrenched in our lives and to share my baby with them.

Welcome!

Michele W

mom to Aubrie 7 yrs (CHaRgE) and 13 yrs, wife to DJ

>

[Guest guest]

How do I get her Email address?

> Hello, ! Yes, Hunter sounds enough like CHARGE to me! If

you

> could take a picture of him and especially his ears, you might be

able

> to email them to Meg Hefner, the genetic counselor with the CHARGE

> Foundation, for some input. She's seen so many kids with CHARGE

that

> she's quite good at identifying them. Even without a definite

> diagnosis, he certainly has the same issues you will find discussed

> here, so hopefully you will find answers and support.

>

> We are very much a family here. My daugher with CHARGE is 7 yrs

old.

> One way I reconciled the whole thing for myself was to think of her

as

> having 3 parents -- she has genetic material from me and my husband

as

> well as genetic material from CHARGE. That explains why she has so

much

> in common with her CHARGE peers/siblings -- as much as she does

with her

> natural brother! Since I cherish the CHARGE family for their

> contribution to my sanity and Aubrie's success, I am more than

happy to

> have them so entrenched in our lives and to share my baby with

them.

>

> Welcome!

>

> Michele W

> mom to Aubrie 7 yrs (CHaRgE) and 13 yrs, wife to DJ

>

> >

[Guest guest]

I just found out about the conference yesterday, I would like to go

but I don't think we will have the money to go. We have to limit our

income so that we get SSI so we can get Medicaid to cover as our

secondary insurance. Pain in the b*** but we do what we have to. So

we will have to see about the conference.

> , Whitney's Trach was placed on 11-16-04. She also had ASD,

AV canal,

> and pulmonary stinosis, which has all been repaired. Yes, that is

my

> Whitney on the picture board. We think she is pretty cute as

well. I need to send

> in a more recent picture of her, as that was her 1 year ago. I

will look

> forward to seeing Hunter's picture. The CHARGE syndrome

conference is in Miami

> this year, we are hoping to go. Will you be attending?

>

> DeAnn Wells, Mom to Austin 9, 6, and CHARgE Whitney 19

Months

>

>

>

[Guest guest]

,

welcome to the list! My daughter Sara is 12 months, and had that

fuzzy diagnosis for a long time. You'll find the list helpful

regardless of the diagnosis. Ultimately Sara's diagnosis came from

the pediatrician months after we had stopped seeing the geneticist.

So glad you found us!

Mark mom to Sara 12 months

> , Whitney's Trach was placed on 11-16-04. She also had

ASD, AV canal,

> and pulmonary stinosis, which has all been repaired. Yes, that

is my

> Whitney on the picture board. We think she is pretty cute as

well. I need to send

> in a more recent picture of her, as that was her 1 year ago. I

will look

> forward to seeing Hunter's picture. The CHARGE syndrome

conference is in Miami

> this year, we are hoping to go. Will you be attending?

>

> DeAnn Wells, Mom to Austin 9, 6, and CHARgE Whitney 19

Months

>

>

>

[Guest guest]

,

If you are denied SSI you probably qualify for a deeming waiver-

that is a medicaid waiver based on medical need. Every state has a

different name for it, but you should be able to get more info

through your county DFCS. We were denied SSI based on our income,

but qualify for the deeming waiver, and it will pay for our copays

and prescriptions and hospitaliztions. Worth checking into! Also

the charge foundation offers scholarships to first time conference

goers...call them and see if you qualify. I dont know if its too

late.

Mark mom to Sara 12 months

> > , Whitney's Trach was placed on 11-16-04. She also had

ASD,

> AV canal,

> > and pulmonary stinosis, which has all been repaired. Yes, that

is

> my

> > Whitney on the picture board. We think she is pretty cute as

> well. I need to send

> > in a more recent picture of her, as that was her 1 year ago. I

> will look

> > forward to seeing Hunter's picture. The CHARGE syndrome

> conference is in Miami

> > this year, we are hoping to go. Will you be attending?

> >

> > DeAnn Wells, Mom to Austin 9, 6, and CHARgE Whitney 19

> Months

> >

> >

> >

[Guest guest]

I think she is meg@....

Michele W

aw82797 wrote:

>

> How do I get her Email address?

>

[Guest guest]

-

I know you already said where you live, but I can't remember. There is

probably funding available in your state for parents to attend

conferences like this one. If you are close enough to drive, you may be

able to get enough funding to go. In IL, we have the Consumer Stipend

Project which gives $600/family every 2 years so I access that for the

conferences. Then I also go to our Lions Club, Rotary, etc to see if I

can get enough scraped together to cover all the costs. If you can't

manage it this year, keep it in mind for the future because it is an

amazing and invaluable experience.

Michele W

aw82797 wrote:

>

> I just found out about the conference yesterday, I would like to go

> but I don't think we will have the money to go.

[Guest guest]

We live in FLorida but are still about 10 hours from Miami. But if we

went we probably would drive.

>

> >

> > I just found out about the conference yesterday, I would like to

go

> > but I don't think we will have the money to go.

[Guest guest]

DeAnn,

I did not realize you were in the Phoenix area. What part of the valley do

you live in? I am in Northwest Tucson and my mom is in Northwest Phoenix,

so I am back and forth fairly often. I am also the Parent Liaison for the

Arizona Deafblind Project.

Kim L

>

> , Whitney's Birthday is July 28th, she was three weeks early. She was

> born in Orange, California, and we have sense moved to the Phoenix, Arizona

> area. She was diagnosed her first day of life by a Genesis. We knew about

> her heart condition before birth, her ears were a funny shape and they found

> her coanal atrisia within hours of her birth. So instantly, she had three

> obvious symptoms, so they called the eye Doctor in and he verified the

> colobomas

> in her retina. I don't know how many symptoms the child needs to be

> diagnosed, but Whitney's Genesis said that 4 of the 6 main symptoms in CHARGE

> was

> enough to get her diagnosed. She doesn't have the G that we can tell, but

> now

> we can say that she definitely has the R as she is only 15 1/2 pounds,

> (that's after a 5 pound growth spurt in the last 5 months! So that would

> make it 5

> out of the 6 symptoms that we have found. Whitney is deaf, has a trach, has

> a fundo, (that may be coming undone), and is g-tube fed. She is also very

> happy, and playful. She just started sitting up, but tires easily. She can

> stand next to furniture, but won't take a step. She sometimes army crawls,

> but usually roles and scoots on her back to get where she wants to. Even if

> Hunter doesn't officially receive the diagnosis of CHARGE, you will find

> support here for any similar issues you find you need help with, as this is a

> very

> active and helpful group. I wish you luck in finding the answers to your

> son. Please keep us posted with any new news you find.

>

> DeAnn, Mom to Austin 9, 6, and CHARgE Whitney 19 months.

>

>

>

[Guest guest]

angela i agree with mic helle we are a familily i am what you would

call a charger therres the chargers and the what do u call the other

pppparents:P anyway im ellen howe 19 years of age4 i agree witht he

others u definitly possilby do have charge i wasnt diagnosed till

three months or was it mum didnt find out till then mum if your

reading this pull me up a little or anyone else that knows us course

as you see we are a family and mum has told them and discussed all

these issues in here befor. anyway of the letters i have cleft lip and

palate dont think cleft and atreisa come together but those who have

it might correct me semi curlucar canals deaf colibomas and a sliht

cateract over one eye very mild one used to have renal stuff i think

growth retardation im the height of a fifteen year old oestioporotic

and dont have many hormones what you describes is charge to me at our

confrence in sydney there was a talk by connie on the new charge gene

thinkk theres info on here somewhere someone might need to help to

where you can find itr once again welcome and love to you from the

family with in the family if that makes sense:)

>

> DeAnn,

>

> I did not realize you were in the Phoenix area. What part of the valley do

> you live in? I am in Northwest Tucson and my mom is in Northwest Phoenix,

> so I am back and forth fairly often. I am also the Parent Liaison for the

> Arizona Deafblind Project.

>

> Kim L

>

>

>

>

> >

> > , Whitney's Birthday is July 28th, she was three weeks early. She

was

> > born in Orange, California, and we have sense moved to the Phoenix, Arizona

> > area. She was diagnosed her first day of life by a Genesis. We knew about

> > her heart condition before birth, her ears were a funny shape and they

found

> > her coanal atrisia within hours of her birth. So instantly, she had three

> > obvious symptoms, so they called the eye Doctor in and he verified the

> > colobomas

> > in her retina. I don't know how many symptoms the child needs to be

> > diagnosed, but Whitney's Genesis said that 4 of the 6 main symptoms in

CHARGE

> > was

> > enough to get her diagnosed. She doesn't have the G that we can tell, but

> > now

> > we can say that she definitely has the R as she is only 15 1/2 pounds,

> > (that's after a 5 pound growth spurt in the last 5 months! So that would

> > make it 5

> > out of the 6 symptoms that we have found. Whitney is deaf, has a trach,

has

> > a fundo, (that may be coming undone), and is g-tube fed. She is also very

> > happy, and playful. She just started sitting up, but tires easily. She

can

> > stand next to furniture, but won't take a step. She sometimes army crawls,

> > but usually roles and scoots on her back to get where she wants to. Even

if

> > Hunter doesn't officially receive the diagnosis of CHARGE, you will find

> > support here for any similar issues you find you need help with, as this is

a

> > very

> > active and helpful group. I wish you luck in finding the answers to your

> > son. Please keep us posted with any new news you find.

> >

> > DeAnn, Mom to Austin 9, 6, and CHARgE Whitney 19 months.

> >

> >

> >