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Re: UPDATE ON US:(

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,

That is one of the problems with the way the system is set up. When you

manage to raise the income to a more comfortable level, you lose other

benefits. Losing other benefits drop the income level below what it was

before your income level was raised!!!

It's a " Catch 22 " situation. Working with our local food bank we saw that

happen a lot.

Is there any possibility of getting a supplemental insurance policy? I know

the cost can sometimes be prohibitive but, if it covers what your husband's

insurance doesn't, it would be worth it to be able to stay home with the

kids.

And, daycare is soooooo expensive, too. It is a terrible feeling to think

you are working for basically " nothing " .

My heart goes out to you. You vent all you want on this list--that's what

we're here for!

Love to you and your family.

Aunt B

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In a message dated 5/21/2003 8:44:37 AM Central Daylight Time,

BKandul@... writes:

>

I got my oldest on a program that goes by her income which is nothing. So she

was excepted but you have to prove the CF is a disability. I have not been

able to prove that of my youngest because so far she does not have damage to

her lungs. But at least they pay for the cost of carrying our insurance and

what our insurance doesn't pay, transportation to the doctor, dental and eye

coverage. So you might look to see in your state our country if they have

such a program. Deb A

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In a message dated 5/21/03 10:07:17 AM Eastern Daylight Time,

cyxty5rss@... writes:

> Is there any possibility of getting a supplemental insurance policy? I know

>

> the cost can sometimes be prohibitive but, if it covers what your husband's

>

> insurance doesn't, it would be worth it to be able to stay home with the

> kids.

>

We have looked into that and it won't cover tube feedings. Witch is

really what we need the medicade for.

mom to

Y Kiersten Lee 2-13-98 w/cf Y

Y Natasha Rose 2-24-00 w/o cf Y

Y Trevor 10-18-01 w/o cf Y

Y Noelle 11-29-02 w/o cf Y

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thank for the info Deb. I will look into it

mom to

Y Kiersten Lee 2-13-98 w/cf Y

Y Natasha Rose 2-24-00 w/o cf Y

Y Trevor 10-18-01 w/o cf Y

Y Noelle 11-29-02 w/o cf Y

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Dear ,

This should be a time in your life to celebrate, instead you are so

worry, too sad. Is there anything you can do at home to supplement

your income?

Love,

mom of a 9 wcf, Venanzio (almost) 7 nocf, Pepe 3 nocf

> Kiertsten is doing well for now:)) She goes in for her next visit

at the end

> of the month. We are going through a rough time right now. My

husband foound

> out that he might be getting a promotion. Thats all nice and good

but if he

> gets it we will loose the ssi and medicade benefits for Kiersten :(

I would

> then be forced into going to work full time and pay for day care

and I really

> don't want Kiersten to go into daycare.On top of that our priviate

insurance

> will not cover her tube feedings so we would have to pay for that

out of

> pocket. We would also have to pay 60 dollars a month for each of

her

> percriptions. Along with hospital and Dr visit copays.

> This is just such a hard place. My husband really wants this

promotion

> cause its getting him where he wants to go with the company he

works for. I

> would be working to only pay for daycare and hopefully cover

Kiersten's

> medical expenses the our priviate insurance won't cover. This

sucks!!!!!!!

> Thanks for letting me vent:)))

>

> mom to

> Y Kiersten Lee 2-13-98 w/cf Y

> Y Natasha Rose 2-24-00 w/o cf Y

> Y Trevor 10-18-01 w/o cf Y

> Y Noelle 11-29-02 w/o cf Y

>

>

>

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What state do you live in? Do they possibly have another program such as

CA's GHPP, which is for parents whose income is over $40,000/yr?

Amber,

Nick's mom

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We live in Va. As far as I know there is not another program out there.

mom to

Y Kiersten Lee 2-13-98 w/cf Y

Y Natasha Rose 2-24-00 w/o cf Y

Y Trevor 10-18-01 w/o cf Y

Y Noelle 11-29-02 w/o cf Y

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You might want to check with the hospital social worker. That is part

of their position -to offer help to patients in all areas-- Also the

accts Receivable dept.they know where to send folks to get help paying

their bills there:):):)

If they don't have the same thing .call the Medicaid agency & ask

what VA does have for the little ones......I know WIC is all states , so

, maybe they just try to keep folks from using it by not telling them

its there:):):)

GOOD LUCK,

LOVE & HUGS,

GrandmomBEV

Re: UPDATE ON US:(

We live in Va. As far as I know there is not another program out there.

mom to

Y Kiersten Lee 2-13-98 w/cf Y

Y Natasha Rose 2-24-00 w/o cf Y

Y Trevor 10-18-01 w/o cf Y

Y Noelle 11-29-02 w/o cf Y

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It has to be removed from the dishwasher soon after it stops, and

drain any excess water that it may have collected. Air dry.

About cutting the time to 15 mins., I do not know, we were so

thrilled to go from 35-40 mins to 20-25 mins. We have never had a

better time than that.

mom of a 9 wcf, Venanzio almost 7 nocf, Pepe 3 nocf

>

> You might want to check with the hospital social worker. That is

part

> of their position -to offer help to patients in all areas-- Also the

> accts Receivable dept.they know where to send folks to get help

paying

> their bills there:):):)

> If they don't have the same thing .call the Medicaid agency & ask

> what VA does have for the little ones......I know WIC is all

states , so

> , maybe they just try to keep folks from using it by not telling

them

> its there:):):)

> GOOD LUCK,

> LOVE & HUGS,

> GrandmomBEV

>

> Re: UPDATE ON US:(

>

>

> We live in Va. As far as I know there is not another program out

there.

>

> mom to

> Y Kiersten Lee 2-13-98 w/cf Y

> Y Natasha Rose 2-24-00 w/o cf Y

> Y Trevor 10-18-01 w/o cf Y

> Y Noelle 11-29-02 w/o cf Y

>

>

>

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In a message dated 5/22/2003 8:18:40 AM Central Daylight Time,

BKandul@... writes:

> We live in Va. As far as I know there is not another program out there.

Talk to you social worker at the hospital she may recommend you to talk to

someone else and they make recommend you to talk to someone else that is how we

found out about the waiver program her in Iowa. Sometimes you just have to

keep talking to people and eventually you will find the right person that know

about new programs that start in you state. Hope this helps Deb A

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In a message dated 5/25/2003 1:42:24 PM Eastern Daylight Time,

gdattig5@... writes:

> We live in Va. As far as I know there is not another program out there.

>

Try the Dept. of Health or Dept. of Family Services - something like

that...if that does work ask e-mail Family Voices. Its a advocacy group of

parents of

children with special health care needs.

Rosemary in NY with 3 children (12, 10 and 6)

with CF. I have a dog named TOBI and

coined the phrase " BREATHE DAMMIT "

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