Re: New to the world of CHARGE.

[Guest guest]

My little grand daughter who has CHARGE was in NICU for the first 4 3/4 months

of her life. She also has Choanal Atresia, had heart repair, had several

infection while in the hospital. she solely feeds on a g-tube (but is having

swallow test tomorrow). She is developmentally delayed but is catching up fast

now. butit did take her a while. She just turned 1 year old on May 1st. She

was also premature by 5 weeks. They say for every month they are in the

hospital they are 2 months behind. But in Sierra's case she is improving

rapidly. She is not sitting up yet but just about there. She never liked lying

on her stomach (I think is was because of her g-tube) so she didn't have much

strength in her arms and upper body. So she is now going to physical therapy

which has help a great deal. At first she wouldn't cooperate with the therapist

because she hates doctors or anyone that might look like one (can't blame her

for all she has been though) But her mommy told the therapist she loves dogs and

that did the trick. They now bring in a dog once week for therapy and Sierra

does everything she is suppose to do and more. The dogs really motivate her.

At first when my granddaughter came home she would gag alot and then my

daughter-in-law starting charting everything she did to Sierra and found there

was a pattern. Every 45 minute or an hour after she was fed Sierra started to

gag so she put the volume down and sure enough she didn't gag anymore. So

volume was a big issue for Sierra. She still isn't getting much volume at one

feeding. I think around 3 ounces. But alot more than she was initially.

Sierra started eating jar food by mouth (maybe a half of a jar now) at around 8

or 9 months.

the biggest thing about Sierra is she gets sick very easily and has been back in

the hospital two or three times with respiratory problems. So my DIL and son

have isolated her from just about everyone especially other children. She has

never had an ear infection but other infection unfortunately. They just got her

hearing aids last month but not so sure they are doing any good. Other than

driving mom nuts with the buzzing sound that comes from them.

Well I hope I have answered a few questions for you. Obvious every child has

their own unique problems and some more severe than others. I wish you all the

best it is a long hard struggle but it does get better with time. I know

people in this support list say that all the time and when you are so involved

in the problems with your baby it doesn't seem like it is going to ever happen

but believe me it does. Your little one will be coming home soon and you will

get in a routine and nothing is better than mommy's loving arms and care to heal

them faster.

Sue (grandma to Sierra 1 year old)

From: aitssa2000

To: CHARGE

Sent: Thursday, May 08, 2003 6:18 PM

Subject: New to the world of CHARGE.

Hello I'm a mommy of a 3 month old baby boy who was just diagnosed

with CHARGE. Christian has Hypoplastic Left Heart Syndrome,

Esopageal Atresia/Trachesophageal Atresia, Mild Coloboma (does that

make sense), Ear Malformations (I suspect he doesn;t hear but that

hasn;t been confirmed by the ABR test), and Choanal Atresia.

He has been in the CICU since he was born and on a vent. He is fed

solely by GTube as his esophagus has not been repaired yet and won't

be anytime soon. He had his first heart operation two months ago.

Drs. were baffled as to why they couldn't extubate him. He would

fail everytime and since he got a gtube his first night they didn't

have to put a feeding tube through his nose --- so we never thought

there was a problem there.

Which brings us to 3 months later still at hospital, still on a vent,

but we finally know that he has bony choanal atresia. He is

scheduled for surgery on Tuesday as long as he gets over an infection

he currently has. Hopefully this surgery will be successful and

he'll finally be able to get off the ventilator.

Were any of your little ones in the hospital for such a long,

continuous length of time? How were they delayed? What will I be

faced with? Did any of your little ones qualify for SSI or

Medicaid? I could just go on and on with questions so I'll just stop

here for now.

Thanks.

[Guest guest]

Welcome to the group.

Kay

She who laughs.... LASTS

New to the world of CHARGE.

> Hello I'm a mommy of a 3 month old baby boy who was just diagnosed

> with CHARGE. Christian has Hypoplastic Left Heart Syndrome,

> Esopageal Atresia/Trachesophageal Atresia, Mild Coloboma (does that

> make sense), Ear Malformations (I suspect he doesn;t hear but that

> hasn;t been confirmed by the ABR test), and Choanal Atresia.

>

> He has been in the CICU since he was born and on a vent. He is fed

> solely by GTube as his esophagus has not been repaired yet and won't

> be anytime soon. He had his first heart operation two months ago.

> Drs. were baffled as to why they couldn't extubate him. He would

> fail everytime and since he got a gtube his first night they didn't

> have to put a feeding tube through his nose --- so we never thought

> there was a problem there.

>

> Which brings us to 3 months later still at hospital, still on a vent,

> but we finally know that he has bony choanal atresia. He is

> scheduled for surgery on Tuesday as long as he gets over an infection

> he currently has. Hopefully this surgery will be successful and

> he'll finally be able to get off the ventilator.

>

> Were any of your little ones in the hospital for such a long,

> continuous length of time? How were they delayed? What will I be

> faced with? Did any of your little ones qualify for SSI or

> Medicaid? I could just go on and on with questions so I'll just stop

> here for now.

>

> Thanks.

>

>

>

> 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]

Hi,

Three months in at the beginning isn't unusual. Our daughter Ellen, was in

for 9 months after birth and has had many long admissions since. They do

tend to get less frequent though and developmentally, Ellen is doing pretty

much like any other 17 year old, at least one with health problems. It's

difficult to say what will happen in future so just hang on in there.

Marea mother of ellen, 17.

New to the world of CHARGE.

> Hello I'm a mommy of a 3 month old baby boy who was just diagnosed

> with CHARGE. Christian has Hypoplastic Left Heart Syndrome,

> Esopageal Atresia/Trachesophageal Atresia, Mild Coloboma (does that

> make sense), Ear Malformations (I suspect he doesn;t hear but that

> hasn;t been confirmed by the ABR test), and Choanal Atresia.

>

> He has been in the CICU since he was born and on a vent. He is fed

> solely by GTube as his esophagus has not been repaired yet and won't

> be anytime soon. He had his first heart operation two months ago.

> Drs. were baffled as to why they couldn't extubate him. He would

> fail everytime and since he got a gtube his first night they didn't

> have to put a feeding tube through his nose --- so we never thought

> there was a problem there.

>

> Which brings us to 3 months later still at hospital, still on a vent,

> but we finally know that he has bony choanal atresia. He is

> scheduled for surgery on Tuesday as long as he gets over an infection

> he currently has. Hopefully this surgery will be successful and

> he'll finally be able to get off the ventilator.

>

> Were any of your little ones in the hospital for such a long,

> continuous length of time? How were they delayed? What will I be

> faced with? Did any of your little ones qualify for SSI or

> Medicaid? I could just go on and on with questions so I'll just stop

> here for now.

>

> Thanks.

>

>

>

> 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]

Welcome.

As long as Christian is in the hospital, he is eligible for SSI, as he has

no income.

New to the world of CHARGE.

> Hello I'm a mommy of a 3 month old baby boy who was just diagnosed

> with CHARGE. Christian has Hypoplastic Left Heart Syndrome,

> Esopageal Atresia/Trachesophageal Atresia, Mild Coloboma (does that

> make sense), Ear Malformations (I suspect he doesn;t hear but that

> hasn;t been confirmed by the ABR test), and Choanal Atresia.

>

> He has been in the CICU since he was born and on a vent. He is fed

> solely by GTube as his esophagus has not been repaired yet and won't

> be anytime soon. He had his first heart operation two months ago.

> Drs. were baffled as to why they couldn't extubate him. He would

> fail everytime and since he got a gtube his first night they didn't

> have to put a feeding tube through his nose --- so we never thought

> there was a problem there.

>

> Which brings us to 3 months later still at hospital, still on a vent,

> but we finally know that he has bony choanal atresia. He is

> scheduled for surgery on Tuesday as long as he gets over an infection

> he currently has. Hopefully this surgery will be successful and

> he'll finally be able to get off the ventilator.

>

> Were any of your little ones in the hospital for such a long,

> continuous length of time? How were they delayed? What will I be

> faced with? Did any of your little ones qualify for SSI or

> Medicaid? I could just go on and on with questions so I'll just stop

> here for now.

>

> Thanks.

>

>

>

> 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]

Welcome to the group!! there are soooo many questions ans unanswered

problems, the unknown--I guess I should say, but there are also things that

are known. You have a beautiful little boy who I'm sure has the CHARGE

spunk and stubborness that will get him through just about anything!! you

will also find that you will have that too--you probably already do!!! You

also have us--these are the best friends/family you could ask for,

they have gotten me through many tough times and ask for nothing in return.

it's not going to be easy, but nothing worth having is many times. It WILL

get easier though, and just seeing the little milestones met no matter how

small is the best thing in the world!! And those milestones will probably

be on Christian's time , not yours, but that's ok, they are still great

accomplishments.

Timmy also had a bony choanol atresia, they are not fun but they sure look

cute with those stents in their nose, when timmy was little we had him in

the carriage at a flea market and a little boy said -- " mom look at that baby

he had a bumble bee on his nose! " We still laugh at that--the boy meant no

harm and it did look like a bug on his nose. I guess what I'm trying to

say, is you have to find humor in things too, although it's not funny at the

time, medically, it's serious business, you just have to hope for the best

and look at it positivelly if you can.

again, welcome to the group and before you know it you'll be giving out

advice and telling stories. get the manual if you can and if possible

attend the conference --it's an eye opening experience. And the best of

all--YOU ARE NOT ALONE!!!

maria mom to timmy 7.5 ChARGE, keegan 5, liam 2.5, wife to pat

New to the world of CHARGE.

> Hello I'm a mommy of a 3 month old baby boy who was just diagnosed

> with CHARGE. Christian has Hypoplastic Left Heart Syndrome,

> Esopageal Atresia/Trachesophageal Atresia, Mild Coloboma (does that

> make sense), Ear Malformations (I suspect he doesn;t hear but that

> hasn;t been confirmed by the ABR test), and Choanal Atresia.

>

> He has been in the CICU since he was born and on a vent. He is fed

> solely by GTube as his esophagus has not been repaired yet and won't

> be anytime soon. He had his first heart operation two months ago.

> Drs. were baffled as to why they couldn't extubate him. He would

> fail everytime and since he got a gtube his first night they didn't

> have to put a feeding tube through his nose --- so we never thought

> there was a problem there.

>

> Which brings us to 3 months later still at hospital, still on a vent,

> but we finally know that he has bony choanal atresia. He is

> scheduled for surgery on Tuesday as long as he gets over an infection

> he currently has. Hopefully this surgery will be successful and

> he'll finally be able to get off the ventilator.

>

> Were any of your little ones in the hospital for such a long,

> continuous length of time? How were they delayed? What will I be

> faced with? Did any of your little ones qualify for SSI or

> Medicaid? I could just go on and on with questions so I'll just stop

> here for now.

>

> Thanks.

>

>

>

> 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]

Christian's Mommy,

Welcome to the list. You will find love and support

here. All CHARGE kids are different and you will be able to learn

from all the families.

Our daughter , now 18 years old ( inspite of 27

surgeries) has mild CHARGE symptoms in many areas. She had choanal

atrisia, ASD heart defect, hearing loss, ear defects just to name a

few.

She spend her whole first month in the hospital. Then we

made many trips back. She spent her whole 6th month in the hospital

getting used to the trach.( it came out at 3 1/2 years) She has had

frequent illness for 18 years. Her last surgery was 5 years ago.

In spite of all that, she graduates from high school June

4th and is off to college in the fall. She is also an accomplished

dancer, ballet, pointe, and jazz.

I wouldn't lie to you, we almost lost her the first month,

her early years were a nightmare, and I will always worry about her

health, but this close to Mother's Day I can say that I am very very

proud to be her mother.

Welcome to the group. Hang in there and email often.

Chances are someone has been through exactly what you are going

through at any given moment.

Give Christian a hug for me.

Lynn

Ohio

> Hello I'm a mommy of a 3 month old baby boy who was just diagnosed

> with CHARGE. Christian has Hypoplastic Left Heart Syndrome,

> Esopageal Atresia/Trachesophageal Atresia, Mild Coloboma (does

that

> make sense), Ear Malformations (I suspect he doesn;t hear but that

> hasn;t been confirmed by the ABR test), and Choanal Atresia.

>

> He has been in the CICU since he was born and on a vent. He is fed

> solely by GTube as his esophagus has not been repaired yet and

won't

> be anytime soon. He had his first heart operation two months

ago.

> Drs. were baffled as to why they couldn't extubate him. He would

> fail everytime and since he got a gtube his first night they

didn't

> have to put a feeding tube through his nose --- so we never

thought

> there was a problem there.

>

> Which brings us to 3 months later still at hospital, still on a

vent,

> but we finally know that he has bony choanal atresia. He is

> scheduled for surgery on Tuesday as long as he gets over an

infection

> he currently has. Hopefully this surgery will be successful and

> he'll finally be able to get off the ventilator.

>

> Were any of your little ones in the hospital for such a long,

> continuous length of time? How were they delayed? What will I be

> faced with? Did any of your little ones qualify for SSI or

> Medicaid? I could just go on and on with questions so I'll just

stop

> here for now.

>

> Thanks.

[Guest guest]

Ask the social worker at the hspital to do the paperwork for you. It's their

job and you shouldn't have to while you're spending your time with your son.

Good luck-things will change!

Barbara-mom,(CHARGE)9,Rosie13

[Guest guest]

My experience was that eligibility for services was easier when done before

he left the hospital. Perhaps as someone said it is because they then don't

count the family income. Kim

> Ask the social worker at the hspital to do the paperwork for you. It's their

> job and you shouldn't have to while you're spending your time with your son.

> Good luck-things will change!

> Barbara-mom,(CHARGE)9,Rosie13

>

>

>