Re: To Michele, mom to Aubrie

December 18, 2003

Yes, Aubrie responded to sounds quite well. We had early intervention services

from our state School for the Deaf. The specialist came every couple of weeks

for 3 years. It was very difficult for her to determine Aubrie's hearing. She

acted like a normally hearing child. She could hear a tiny jingle bell. But

when we were able to do audiological testing in the booth, we finally figured

out that her hearing was not normal. It was a frustrating road trying to figure

out if and what she heard -- or what she did not.

I also pumped breast milk for months. It was an excrutiating schedule to pump

for 30 min or so, then feed her for an hour, then watch her for vomiting (severe

GE reflux) for 30 min, then start all over again -- 24 hrs a day. I look back

and don't know how I did it, although I do remember that I didn't do it well :-)

Aubrie sucked a bit, but never could get more than 10-20cc at a time, took

forever to eat, didn't grow, etc. At 3 weeks old, she was hospitalized for

failure to thrive. It was terrible. That may have been when we began the tube

feedings. I held on to the hope that she would nurse, but eventually it was

clear that she wouldn't and I couldn't go on with the crazy demands on my body

and time.

Aubrie has a submucous cleft palate. It is not evident visually, but the doctor

can feel it with his fingers. Her palate is also narrow and highly arched. I

am sure that her structural differences interfered with feeding as much as

muscle weakness, neurological issues, etc. Feeding therapy was a frustrating

nightmare because there were so many factors at play. We kept at it though, and

Aubrie was eating orally had her tube removed by age 1.5 yrs. Even if you find

that Mihir has significant feeding issues now, there is hope that they can be

overcome.

I was a teacher before I became pregnant. I planned to do family child care in

Aubrie's infancy. I had to let my day care child go and give up making an

income. I thought I'd never have a life again. I couldn't imagine how I would

ever be able to work and manage all of her therapy and doctor appts, school

meetings, etc. Things have worked out just fine. It took several years, but I

am now able to have an identity outside of my family. I still realize that my

parenting responsibilities take more time than those of most of my friends. I

have given up serving on boards, being room mother, that kind of thing. I used

to enjoy being involved in my community, but I simply don't have the time or

energy now.

You will find peace again. You will continue to find new joys in Mihir every

day. I had an " aha " moment recently. I attend Aubrie's OT at school every

other week. At the most recent session, I realized that I can't look at her in

an evaluative, clinical way anymore. As I watched her doing her therapy tasks,

all I could think about was how adorable she is, look at her smile, etc. I

couldn't focus on what she was doing, how she was doing it, etc. I've finally

become her " mom " through and through. As an infant, all I could see was a huge

medical problem. I couldn't see " her " . Our early photos and videos of her are

more a record of her progress, or lack of, than a snapshot of her infancy. Now

I take photos and videos to capture who she is at 6 years old, not to document

her skill level.

Michele W

To Michele, mom to Aubrie

Dear Michele,

Nice reply and many things to note. Eagerly waiting to see the light

at the end of the tunnel. Though my mom wants to take care of him, I

even dropped my idea of working because I don't want to leave Mihir

with my mom/ daycare with his conditions. (I didn't tell my mom abt

Mihir's condition as she was in her early stage of Parkinson's L --

didn't want to give a burden)

Just want to ask u one thing-did ur daughter respond to ANY sort of

sound when she is small-say like mihir is now-3 months old? Because

when I talk to Mihir, he smiles back at me, he does this all the

time, also when my dad called him from his back when he is on the

bed lying, he did look up, like how we respond. I received some

brochures from California state hearing center yesterday; I have to

go thru them. Will certainly make sure Mihir gets his aids soon.

Mihir is 7lb when he was born, I tried to nurse, but did not work

out, so I am pumping and giving the bottle. Initially there was a

problem with bottle nipple, he did not gain enough weight, once we

changed the nipple it worked, and he drank abt 2oz of milk in 20min

or so. From the past 2 weeks he is so naughty taking only abt 15ozs

a day, taking 1oz in 5-10min, chewing the nipple and doing all nasty

things, plays for a while-finally it takes abt 45 min to feed 2 oz.

I am so tired of this and went for weight check up and his DOC said

he gained little but not as expected L some how I am continuing .--

today he called and said he is referring him to a feeding specialist-

saying there MIGHT be a palate problem.

I did order CHARGE manual & am waiting for it.

Hari,

Mihir's mom

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

7th International

CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24, 2005.

Information will be available at our website

www.chargesyndrome.org or by calling 1-. In Canada, you may

contact CHARGE Syndrome Canada at 1- (families), visit

www.chargesyndrome.ca, or email info@.... Thank you!

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

December 19, 2003

Dear Michele,

Thanks for the reply again. Today I called Mihir's audiologist to

find out again how his hearing loss is and other factors,

unfortunately she is out of town for a week, so just left a messg,

also tried contacting California EARLY START program that helps

infants with many services. Q for u--when do u think hearing aids

gets fitted, as early as Mihir is now? I have no idea so asking.

Like Aubrie, even Mihir responds to tiny sounds. Q for u again--the

services u got for ur child, reg hearing-- did u pay for them or it

got thru insurance ? Pls can u help me with this issue. I also have

some contact infos that is aksing to call and find out if Mihir

qualifies for services received from them, I am just confused so pls

throw some light on me!

Thank u so much again for sharing ur exps during ur motherhood and

joblife.

After reading abt Aubrie's GE reflux, I am feeling I am bit lucky,

atleast Mihir is not throwing, I can now imagine ur hard days.

I just take pics of Mihir when ever he looks cute to me and the

conditions u said. I know that we usually look for new things they r

doing--can't avoid.

Hari, Mihir's mom

> Yes, Aubrie responded to sounds quite well. We had early

intervention services from our state School for the Deaf. The

specialist came every couple of weeks for 3 years. It was very

difficult for her to determine Aubrie's hearing. She acted like a

normally hearing child. She could hear a tiny jingle bell. But

when we were able to do audiological testing in the booth, we

finally figured out that her hearing was not normal. It was a

frustrating road trying to figure out if and what she heard -- or

what she did not.

>

> I also pumped breast milk for months. It was an excrutiating

schedule to pump for 30 min or so, then feed her for an hour, then

watch her for vomiting (severe GE reflux) for 30 min, then start all

over again -- 24 hrs a day. I look back and don't know how I did

it, although I do remember that I didn't do it well :-) Aubrie

sucked a bit, but never could get more than 10-20cc at a time, took

forever to eat, didn't grow, etc. At 3 weeks old, she was

hospitalized for failure to thrive. It was terrible. That may have

been when we began the tube feedings. I held on to the hope that

she would nurse, but eventually it was clear that she wouldn't and I

couldn't go on with the crazy demands on my body and time.

>

> Aubrie has a submucous cleft palate. It is not evident visually,

but the doctor can feel it with his fingers. Her palate is also

narrow and highly arched. I am sure that her structural differences

interfered with feeding as much as muscle weakness, neurological

issues, etc. Feeding therapy was a frustrating nightmare because

there were so many factors at play. We kept at it though, and

Aubrie was eating orally had her tube removed by age 1.5 yrs. Even

if you find that Mihir has significant feeding issues now, there is

hope that they can be overcome.

>

> I was a teacher before I became pregnant. I planned to do family

child care in Aubrie's infancy. I had to let my day care child go

and give up making an income. I thought I'd never have a life

again. I couldn't imagine how I would ever be able to work and

manage all of her therapy and doctor appts, school meetings, etc.

Things have worked out just fine. It took several years, but I am

now able to have an identity outside of my family. I still realize

that my parenting responsibilities take more time than those of most

of my friends. I have given up serving on boards, being room

mother, that kind of thing. I used to enjoy being involved in my

community, but I simply don't have the time or energy now.

>

> You will find peace again. You will continue to find new joys in

Mihir every day. I had an " aha " moment recently. I attend Aubrie's

OT at school every other week. At the most recent session, I

realized that I can't look at her in an evaluative, clinical way

anymore. As I watched her doing her therapy tasks, all I could

think about was how adorable she is, look at her smile, etc. I

couldn't focus on what she was doing, how she was doing it, etc.

I've finally become her " mom " through and through. As an infant,

all I could see was a huge medical problem. I couldn't see " her " .

Our early photos and videos of her are more a record of her

progress, or lack of, than a snapshot of her infancy. Now I take

photos and videos to capture who she is at 6 years old, not to

document her skill level.

>

> Michele W

>

> To Michele, mom to Aubrie

>

> Dear Michele,

> Nice reply and many things to note. Eagerly waiting to see the

light

> at the end of the tunnel. Though my mom wants to take care of

him, I

> even dropped my idea of working because I don't want to leave

Mihir

> with my mom/ daycare with his conditions. (I didn't tell my mom

abt

> Mihir's condition as she was in her early stage of Parkinson's

L --

> didn't want to give a burden)

>

> Just want to ask u one thing-did ur daughter respond to ANY sort

of

> sound when she is small-say like mihir is now-3 months old?

Because

> when I talk to Mihir, he smiles back at me, he does this all the

> time, also when my dad called him from his back when he is on

the

> bed lying, he did look up, like how we respond. I received some

> brochures from California state hearing center yesterday; I have

to

> go thru them. Will certainly make sure Mihir gets his aids soon.

>

> Mihir is 7lb when he was born, I tried to nurse, but did not

work

> out, so I am pumping and giving the bottle. Initially there was

a

> problem with bottle nipple, he did not gain enough weight, once

we

> changed the nipple it worked, and he drank abt 2oz of milk in

20min

> or so. From the past 2 weeks he is so naughty taking only abt

15ozs

> a day, taking 1oz in 5-10min, chewing the nipple and doing all

nasty

> things, plays for a while-finally it takes abt 45 min to feed 2

oz.

> I am so tired of this and went for weight check up and his DOC

said

> he gained little but not as expected L some how I am

continuing .--

> today he called and said he is referring him to a feeding

specialist-

> saying there MIGHT be a palate problem.

>

> I did order CHARGE manual & am waiting for it.

>

> Hari,

> Mihir's mom

>

> 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@c... or visit

> the CHARGE Syndrome Foundation web page

> at http://www.chargesyndrome.org

> 7th International

> CHARGE Syndrome Conference, Miami Beach, Florida, July 22-24,

2005. Information will be available at our website

> www.chargesyndrome.org or by calling 1-. In Canada,

you may contact CHARGE Syndrome Canada at 1- (families),

visit www.chargesyndrome.ca, or email info@c... Thank you!

>

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

-----------

>

January 5, 2004

Dear Michele,

Sorry for my disappearance from the group for a while, I received

the manual on christamas eve and I started reading it and meanwhile

Mihir had appts so couldn't mail u soon.

Good luck to Aubrie for tomorrow's testing.

I did contact Parent links, CA deaf & Blind and Early start program. I

heard from Parents links last week. I am just confused what's going

on. Mihir was evaluated by a audiologist and she says " CONDUCTIVE "

hearing loss and needs to be evaluated on a periodic basis. We r

seeing ENT this thursay to discuss abt the hearing aids etc. Until

now Mihir's nose wan't checked to rule out choanal atresia All

the hearing tests were done thru my health insurance. U mentioned

that Aubrie was evaluated thru state early intervention program--is

it diff from normal audiologist testing?

Also when is OT/PT is required? I mean chargers with what conditions

(such as hearing loss/vision loss etc) should take it?

Hari, Mihir's mom.

> > Yes, Aubrie responded to sounds quite well. We had early

> intervention services from our state School for the Deaf. The

> specialist came every couple of weeks for 3 years. It was very

> difficult for her to determine Aubrie's hearing. She acted like

a

> normally hearing child. She could hear a tiny jingle bell. But

> when we were able to do audiological testing in the booth, we

> finally figured out that her hearing was not normal. It was a

> frustrating road trying to figure out if and what she heard --

or

> what she did not.

> >

> > I also pumped breast milk for months. It was an excrutiating

> schedule to pump for 30 min or so, then feed her for an hour,

then

> watch her for vomiting (severe GE reflux) for 30 min, then start

all

> over again -- 24 hrs a day. I look back and don't know how I

did

> it, although I do remember that I didn't do it well :-) Aubrie

> sucked a bit, but never could get more than 10-20cc at a time,

took

> forever to eat, didn't grow, etc. At 3 weeks old, she was

> hospitalized for failure to thrive. It was terrible. That may

have

> been when we began the tube feedings. I held on to the hope

that

> she would nurse, but eventually it was clear that she wouldn't

and I

> couldn't go on with the crazy demands on my body and time.

> >

> > Aubrie has a submucous cleft palate. It is not evident

visually,

> but the doctor can feel it with his fingers. Her palate is also

> narrow and highly arched. I am sure that her structural

differences

> interfered with feeding as much as muscle weakness, neurological

> issues, etc. Feeding therapy was a frustrating nightmare

because

> there were so many factors at play. We kept at it though, and

> Aubrie was eating orally had her tube removed by age 1.5 yrs.

Even

> if you find that Mihir has significant feeding issues now, there

is

> hope that they can be overcome.

> >

> > I was a teacher before I became pregnant. I planned to do

family

> child care in Aubrie's infancy. I had to let my day care child

go

> and give up making an income. I thought I'd never have a life

> again. I couldn't imagine how I would ever be able to work and

> manage all of her therapy and doctor appts, school meetings,

etc.

> Things have worked out just fine. It took several years, but I

am

> now able to have an identity outside of my family. I still

realize

> that my parenting responsibilities take more time than those of

most

> of my friends. I have given up serving on boards, being room

> mother, that kind of thing. I used to enjoy being involved in

my

> community, but I simply don't have the time or energy now.

> >

> > You will find peace again. You will continue to find new joys

in

> Mihir every day. I had an " aha " moment recently. I attend

Aubrie's

> OT at school every other week. At the most recent session, I

> realized that I can't look at her in an evaluative, clinical way

> anymore. As I watched her doing her therapy tasks, all I could

> think about was how adorable she is, look at her smile, etc. I

> couldn't focus on what she was doing, how she was doing it,

etc.

> I've finally become her " mom " through and through. As an

infant,

> all I could see was a huge medical problem. I couldn't

see " her " .

> Our early photos and videos of her are more a record of her

> progress, or lack of, than a snapshot of her infancy. Now I

take

> photos and videos to capture who she is at 6 years old, not to

> document her skill level.

> >

> > Michele W

> >

> > To Michele, mom to Aubrie

> >

> > Dear Michele,

> > Nice reply and many things to note. Eagerly waiting to see

the

> light

> > at the end of the tunnel. Though my mom wants to take care

of

> him, I

> > even dropped my idea of working because I don't want to

leave

> Mihir

> > with my mom/ daycare with his conditions. (I didn't tell my

mom

> abt

> > Mihir's condition as she was in her early stage of

Parkinson's

> L --

> > didn't want to give a burden)

> >

> > Just want to ask u one thing-did ur daughter respond to ANY

sort

> of

> > sound when she is small-say like mihir is now-3 months old?

> Because

> > when I talk to Mihir, he smiles back at me, he does this all

the

> > time, also when my dad called him from his back when he is

on

> the

> > bed lying, he did look up, like how we respond. I received

some

> > brochures from California state hearing center yesterday; I

have

> to

> > go thru them. Will certainly make sure Mihir gets his aids

soon.

> >

> > Mihir is 7lb when he was born, I tried to nurse, but did not

> work

> > out, so I am pumping and giving the bottle. Initially there

was

> a

> > problem with bottle nipple, he did not gain enough weight,

once

> we

> > changed the nipple it worked, and he drank abt 2oz of milk

in

> 20min

> > or so. From the past 2 weeks he is so naughty taking only

abt

> 15ozs

> > a day, taking 1oz in 5-10min, chewing the nipple and doing

all

> nasty

> > things, plays for a while-finally it takes abt 45 min to

feed 2

> oz.

> > I am so tired of this and went for weight check up and his

DOC

> said

> > he gained little but not as expected L some how I am

> continuing .--

> > today he called and said he is referring him to a feeding

> specialist-

> > saying there MIGHT be a palate problem.

> >

> > I did order CHARGE manual & am waiting for it.

> >

> > Hari,

> > Mihir's mom

> >

> > 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@c... or visit

> > the CHARGE Syndrome Foundation web page

> > at http://www.chargesyndrome.org

> > 7th International

> > CHARGE Syndrome Conference, Miami Beach, Florida, July 22-

24,

> 2005. Information will be available at our website

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

Canada,

> you may contact CHARGE Syndrome Canada at 1-

(families),

> visit www.chargesyndrome.ca, or email info@c... Thank you!

> >

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

----

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

> >

January 5, 2004