RE: New member to this list

Posted January 19, 2000 · January 19, 2000

Kim:

My daughter Ally is 17 mths old and also is microcephalic w/seizures. She

has cleft lip and palate, ASD (healed on its own), moderate hearing loss, and

we are not sure about her vision. I believe you and I are the only on the

list with microcephaly and CHARGE. It will be great to have you around.

WELCOME to you and !!

Robin mom to Ally (17 mths) ChARgE

Posted January 19, 2000 · January 19, 2000

Welcome to Kim!

Glad you have found the onelist and hope you find it helpful.

My son was on O2 until he was about 4 years old. He did not walk until 4

years of age either. That is due to the inner ear problems with the

malformations or absence of the semicircular canals. But these kids can walk

and do. They compensate wonderfully.

You sound like a loving mother!

Posted January 19, 2000 · January 19, 2000

Kim,

Welcome to the list. You will find this family to be very supportive,

loving, caring, and very generous.

My daughter Brittney 7, has CHARgE as well. She had the choanal atresia

for the longest time and had a trach. After 6 yrs and 5 mths she was able to

say goodbye to the trach.

This list is very helpful. Many topics come up and many get involved

with their ideas, concerns and opionions. I hope you will stay with us and

be apart of our family.

Fondly,

Amy mom to Brittney 7 CHARgE, 5, and 3

MI

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

>

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

Posted January 19, 2000 · January 19, 2000

Kim,

Welcome to the list!! sounds just adorable, I'm sure you'll enjoy it

here in CHARGEland, and maybe you'll be able to make it to the next conference

to meet some other CHARGErs. I went last summer to my first one and it was so

uplifting and amazing to meet the kids.

I'm sorry to hear you have had bad experiences with people thinking they can

catch CHARGE, I feel bad for people like that, missing out on really great kids.

Their loss, we know how special and wonderful they are.

Mom to Kennedy 23 mos old CHARGEr, 10, 8, and wife to Graeme

New Brunswick, Canada

Visit the " Weir homepage " at: http://www.geocities.com/SunsetStrip/Palms/5716

ICQ #1426476

----Original Message-----

To: CHARGEONELIST (DOT) COM <CHARGEONELIST (DOT) COM>

Date: Wednesday, January 19, 2000 5:20 PM

Subject: 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

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

Posted January 19, 2000 · January 19, 2000

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

>

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

Posted January 20, 2000 · January 20, 2000

Hello everyone,

Thank you for such a warm response. I really needed it. My family and I live

here in Los Angeles, California. since was born I quit my job and left

school. I am now able to take a class at a time. my husband and I have been

married for 11 1/2 years now. We both met while serving in the U.S. Air

Force in Ramstein, Germany. We have 3 great kids. 10, Beth 3

and Natasha 9 months. People always comment on Natasha but little do they

know it's easier to take care of . Our family and close friends always

opt to watch .

We were concerned how would react when we found out we were going to

have Natasha.Now when Natasha would cry, would roll over to Natasha's

cradle push down on the bottom of the cradle and rock her. If that didn't

stop the crying would throw her beanie babies at the cradle. When that

wouldn't work would sit up, strain herself to look up at Natasha and

shout something that sounds like " shut up " . Then would look at me and

point to Natasha and make facial and hand gestures as if to say " don't you

see me? help me make her stop " . I love to just watch to see what she

does and how she tries to figures things out.

's brother really shows he loves her. It is very common for us

to find in 's bed in the morning because he says " he wants to

make sure she knows if she needs me I am right here " . and love

to wrestle. She climbs him like she is climbing a mountain. They punch each

other (not hard) and roll around laughing.

Many nights must sleep with me because she vomits so much when she

would have a BM. also with her breathing problems and she would need extra

treatments. Sometimes I just can't sleep unless is with me. Natasha is

a very clingy child. She is like bubble gum stuck to my hip. sleeps on

my right and Natasha on my left. (we don't want any more kids and I find

this to be a very effective birth control method)<grin> in the middle of the

night, would sit up, reach over me and pinch Natasha!! then

would pull the covers over herself and giggle while Natasha is screaming. I

would pull the covers back and scold " why did you do that? That was

not nice?! " Then would cry but it's all crocodile tears. This is a

typical night at my house at 2am.

Thank you for letting me share with you. If you are interested in viewing

some pictures of and our crazy family you can see us here and please

tell me what you think.

http://community.webtv.net/kimthorngren/ThorngrenFamilys

Thank you,

Kim

>

>Reply-To: CHARGEonelist

>To: <CHARGEonelist>

>Subject: 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

> >

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

Posted January 20, 2000 · January 20, 2000

Kim -

Welcome to the list! My daughter Berkeley is 8 months old so we have yet to

experience much of what you're dealing with now. However, I look forward to

getting to know you and better. Everyone here has been tremendously

helpful and supportive. I am so glad that you found the list.

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