Re: New member to this list

[Guest guest]

My son, Bradley has microcephaly and CHARGE.

[Guest guest]

Michele,

Thanks for the comments. I have never met anyone with CHARGE around here or

maybe just never known they had it? Which Kaiser do you go to? Who is going

to do the heart surgery on Berkeley? 's cardiologist is Dr. Hohn. Great

Doc. and the doc who did the heart surgery was Dr. Wells. After the heart

surgery grew. Boy, did she. At 2 years old she was wearing 12 month

old cloths now she is wearing T3 or 4. It's good to know you aren't too far

away.

Kim

>

>Reply-To: CHARGEonelist

>To: " 'CHARGEonelist' " <CHARGEonelist>

>Subject: RE: New member to this list

>Date: Thu, 20 Jan 2000 09:21:27 -0800

>

>Kim -

>

>Wow! You are very close to us. We live in Bakersfield and Berkeley has

>had all her surgeries done at Kaiser Hospital in Los Angeles. She is

>supposed to have heart surgery next month at Children's.

>

>Are you aware of any other CHARGErs in your area? To the best of our

>knowledge, we are the only ones in our county. You have wonderful page and

> is beautiful. I really enjoyed seeing all the pictures.

>

>Look forward to hearing more from you.

>

>Michele Hatfield, mom to (4) & Berkeley (8mo) CHARgE

>

> Re: New member to this list

> >Date: Wed, 19 Jan 2000 18:16:42 -0500

> >

> >Kim,

> >

> >Where do you live?Glad to have you on the list!!

> > Foley

> >Mom to $, (CHARGE guy in heaven) and Jillian 22 months

> >w?cHaRGE

> > New member to this list

> >

> >

> > >

> > >

> > > Hello everyone,

> > >

> > > I would like to introduce myself. My name is Kim. My daughter

>Beth

> >has

> > > been diagnosed with Charge, Vater Association and Mitochondira

>Myopathy.

> > > I have not met anyone with Charge. It was such a pleasure to know that

> >this

> > > list existed. I am looking forward to exchange of information and

>advice

> >for

> > > my daughter for the best chance I can try to set before her

>life

> >with

> > > these challenges.

> > >

> > > is a sweet girl who is generally happy. She is feisty. She knows

> >what

> > > she wants and what she doesn't, from food to people. will be 4

>in

> > > march. She isn't walking but she is rolling. She once in a great while

> >will

> > > say a word but we don't hear it again for about 3 to 6 months. she

>does

> >call

> > > for me " ma ma " . out of all the words for her to say, hearing her call

>me

> > " ma

> > > ma " just warms my heart.

> > >

> > > Beth is on oxygen 24 hrs. a day. As far as the CHARGE syndrome

> >goes

> > > has...

> > >

> > > Heart defect (pfo,pda) corrected heart surgery when she was 2 years

>old.

> > >

> > > Atresia of the choanae.

> > >

> > > Retardation. I prefer to call it delayed.

> > >

> > > Ear - Partial Hearing loss

> > >

> > > katie also has a weak immune system, seizures, microcephaly and seems

>to

> > > have some difficulty swallowing.

> > >

> > > She has other things going on with her but I don't want to sound like

>a

> > > medical manual.

> > > I love just the way she is. I couldn't imagine life without her.

> >She

> > > brings us so much joy.Especially her sense of humor. It's great!! If

>she

> > > ever walks or talks that would be a major blessing on top of

>everything

> > > else. I think the hardest part for me to take is not only some pain

>she

> >has

> > > to go through like the occasional I.V.'s, it's the way people look and

> >treat

> > > her. Like they are afraid of her. as if she is going to get up and bit

> >them

> > > or they might catch " it " . She doesn't have any facial malformation,

>just

> >the

> > > nasal canula for the o2. I do have a web site of family pictures. I

>will

> > > post it the next time I write.

> > >

> > > Thanks everyone,

> > >

> > > Kim

> > >

> > > Mom to 3yrs, cHARgE

> > >

> > >

> > > ______________________________________________________

> > > Get Your Private, Free Email at http://www.hotmail.com

> > >

> > >

> > > ---------------------------

[Guest guest]

NEW MEMBER........

WELCOME TO THE LIST.IF YOU ARE IN AUSTRALIA PLEASE CONTACT US AT

austcharge@... any one else on the list if australia.

marie

>

>Reply-To: CHARGEonelist

>To: CHARGEONELIST (DOT) COM

>Subject: New member to this list

>Date: Wed, 19 Jan 2000 13:20:30 PST

>

>Hello everyone,

>

>I would like to introduce myself. My name is Kim. My daughter Beth

>has

>been diagnosed with Charge, Vater Association and Mitochondira Myopathy.

>I have not met anyone with Charge. It was such a pleasure to know that this

>list existed. I am looking forward to exchange of information and advice

>for

>my daughter for the best chance I can try to set before her life

>with

>these challenges.

>

> is a sweet girl who is generally happy. She is feisty. She knows what

>she wants and what she doesn't, from food to people. will be 4 in

>march. She isn't walking but she is rolling. She once in a great while will

>say a word but we don't hear it again for about 3 to 6 months. she does

>call

>for me " ma ma " . out of all the words for her to say, hearing her call me

> " ma

>ma " just warms my heart.

>

> Beth is on oxygen 24 hrs. a day. As far as the CHARGE syndrome goes

> has...

>

>Heart defect (pfo,pda) corrected heart surgery when she was 2 years old.

>

>Atresia of the choanae.

>

>Retardation. I prefer to call it delayed.

>

>Ear - Partial Hearing loss

>

>katie also has a weak immune system, seizures, microcephaly and seems to

>have some difficulty swallowing.

>

>She has other things going on with her but I don't want to sound like a

>medical manual.

>I love just the way she is. I couldn't imagine life without her. She

>brings us so much joy.Especially her sense of humor. It's great!! If she

>ever walks or talks that would be a major blessing on top of everything

>else. I think the hardest part for me to take is not only some pain she has

>to go through like the occasional I.V.'s, it's the way people look and

>treat

>her. Like they are afraid of her. as if she is going to get up and bit them

>or they might catch " it " . She doesn't have any facial malformation, just

>the

>nasal canula for the o2. I do have a web site of family pictures. I will

>post it the next time I write.

>

>Thanks everyone,

>

> Kim

>

> Mom to 3yrs, cHARgE

>

>

>______________________________________________________

>Get Your Private, Free Email at http://www.hotmail.com

>

______________________________________________________

Get Your Private, Free Email at http://www.hotmail.com

[Guest guest]

Kim,

Welcome to the CHARGE List. Beth sounds like a wonderful child.

My son is 7 and we have had a few instances of staring, but either

it's not happening a lot, or I am just oblivious to it. But then again, with

all the kids I take care of, I really don't have time to notice!

Janet

Wife to Matt

Mom to & (CHaRGEr) 7 1/2,

nne 2 3/4

Mom to 19 months and 2

Weymouth, Massachusetts, USA

<A HREF= " http://members.aol.com/jpm4189/page/index.htm " >Our Family Homepage</

A>

[Guest guest]

Welcome to the list. I hope you find it as helpful as we do. Not only will

you find great advice but more importantly the love and support of so many

wonderful people. Just when you feel alone and can not seem to handle more

negative news or issues the " FAMILY " we have on the list comes through making

you happy and putting a smile back on your face

Looking forward to chatting.

Murray

wife to Jay and mom to twin Chargers and

[Guest guest]

Kim -

Wow! You are very close to us. We live in Bakersfield and Berkeley has had all

her surgeries done at Kaiser Hospital in Los Angeles. She is supposed to have

heart surgery next month at Children's.

Are you aware of any other CHARGErs in your area? To the best of our knowledge,

we are the only ones in our county. You have wonderful page and is

beautiful. I really enjoyed seeing all the pictures.

Look forward to hearing more from you.

Michele Hatfield, mom to (4) & Berkeley (8mo) CHARgE

Re: New member to this list

>Date: Wed, 19 Jan 2000 18:16:42 -0500

>

>Kim,

>

>Where do you live?Glad to have you on the list!!

> Foley

>Mom to $, (CHARGE guy in heaven) and Jillian 22 months

>w?cHaRGE

> New member to this list

>

>

> >

> >

> > Hello everyone,

> >

> > I would like to introduce myself. My name is Kim. My daughter Beth

>has

> > been diagnosed with Charge, Vater Association and Mitochondira Myopathy.

> > I have not met anyone with Charge. It was such a pleasure to know that

>this

> > list existed. I am looking forward to exchange of information and advice

>for

> > my daughter for the best chance I can try to set before her life

>with

> > these challenges.

> >

> > is a sweet girl who is generally happy. She is feisty. She knows

>what

> > she wants and what she doesn't, from food to people. will be 4 in

> > march. She isn't walking but she is rolling. She once in a great while

>will

> > say a word but we don't hear it again for about 3 to 6 months. she does

>call

> > for me " ma ma " . out of all the words for her to say, hearing her call me

> " ma

> > ma " just warms my heart.

> >

> > Beth is on oxygen 24 hrs. a day. As far as the CHARGE syndrome

>goes

> > has...

> >

> > Heart defect (pfo,pda) corrected heart surgery when she was 2 years old.

> >

> > Atresia of the choanae.

> >

> > Retardation. I prefer to call it delayed.

> >

> > Ear - Partial Hearing loss

> >

> > katie also has a weak immune system, seizures, microcephaly and seems to

> > have some difficulty swallowing.

> >

> > She has other things going on with her but I don't want to sound like a

> > medical manual.

> > I love just the way she is. I couldn't imagine life without her.

>She

> > brings us so much joy.Especially her sense of humor. It's great!! If she

> > ever walks or talks that would be a major blessing on top of everything

> > else. I think the hardest part for me to take is not only some pain she

>has

> > to go through like the occasional I.V.'s, it's the way people look and

>treat

> > her. Like they are afraid of her. as if she is going to get up and bit

>them

> > or they might catch " it " . She doesn't have any facial malformation, just

>the

> > nasal canula for the o2. I do have a web site of family pictures. I will

> > post it the next time I write.

> >

> > Thanks everyone,

> >

> > Kim

> >

> > Mom to 3yrs, cHARgE

> >

> >

> > ______________________________________________________

> > Get Your Private, Free Email at http://www.hotmail.com

> >

> >

> > ---------------------------

[Guest guest]

Kim -

We go to the main Kaiser hospital on Sunset Blvd. In Hollywood. Her

cardiologists are Dr. Salem and Dr. Degner, but Dr. Sintek is supposed to do the

surgery. Where did have her heart surgery done? We'll be going to

Children's. So far I have only heard good things about them. I hope that

Berkeley will grow better after surgery. She is 8 mo and 9lbs, wearing 3 months

clothes primarily for the length.

Michele

Re: New member to this list

> >Date: Wed, 19 Jan 2000 18:16:42 -0500

> >

> >Kim,

> >

> >Where do you live?Glad to have you on the list!!

> > Foley

> >Mom to $, (CHARGE guy in heaven) and Jillian 22 months

> >w?cHaRGE

> > New member to this list

> >

> >

> > >

> > >

> > > Hello everyone,

> > >

> > > I would like to introduce myself. My name is Kim. My daughter

>Beth

> >has

> > > been diagnosed with Charge, Vater Association and Mitochondira

>Myopathy.

> > > I have not met anyone with Charge. It was such a pleasure to know that

> >this

> > > list existed. I am looking forward to exchange of information and

>advice

> >for

> > > my daughter for the best chance I can try to set before her

>life

> >with

> > > these challenges.

> > >

> > > is a sweet girl who is generally happy. She is feisty. She knows

> >what

> > > she wants and what she doesn't, from food to people. will be 4

>in

> > > march. She isn't walking but she is rolling. She once in a great while

> >will

> > > say a word but we don't hear it again for about 3 to 6 months. she

>does

> >call

> > > for me " ma ma " . out of all the words for her to say, hearing her call

>me

> > " ma

> > > ma " just warms my heart.

> > >

> > > Beth is on oxygen 24 hrs. a day. As far as the CHARGE syndrome

> >goes

> > > has...

> > >

> > > Heart defect (pfo,pda) corrected heart surgery when she was 2 years

>old.

> > >

> > > Atresia of the choanae.

> > >

> > > Retardation. I prefer to call it delayed.

> > >

> > > Ear - Partial Hearing loss

> > >

> > > katie also has a weak immune system, seizures, microcephaly and seems

>to

> > > have some difficulty swallowing.

> > >

> > > She has other things going on with her but I don't want to sound like

>a

> > > medical manual.

> > > I love just the way she is. I couldn't imagine life without her.

> >She

> > > brings us so much joy.Especially her sense of humor. It's great!! If

>she

> > > ever walks or talks that would be a major blessing on top of

>everything

> > > else. I think the hardest part for me to take is not only some pain

>she

> >has

> > > to go through like the occasional I.V.'s, it's the way people look and

> >treat

> > > her. Like they are afraid of her. as if she is going to get up and bit

> >them

> > > or they might catch " it " . She doesn't have any facial malformation,

>just

> >the

> > > nasal canula for the o2. I do have a web site of family pictures. I

>will

> > > post it the next time I write.

> > >

> > > Thanks everyone,

> > >

> > > Kim

> > >

> > > Mom to 3yrs, cHARgE

> > >

> > >

> > > ______________________________________________________

> > > Get Your Private, Free Email at http://www.hotmail.com

> > >

> > >

> > > ---------------------------