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Hello, just me again. I read your other mail and we haven't had to pay for a

thing. RISE Early Intervension i beleive was paid for by Amy's medicaid. She

starts pre-school on her 3rd birthday in a month and RISE stops coming. They

all will be greatly missed. Amy will be receiving her therapies threw school

now. We don't have to pay for pre-school either. Although i beleive the

state is required to pay for any schooling she gets(that costs$$) till she's

21. After all they are the ones that require she starts pre-schoolat age 3.

But if the ANB works for you then see about the medicaid for ANB too. We

were fortunate to have this for her. she's had 7 surgeries and countless

appointments,tests, and the therapy that is threw RISE and MICE and The

Bureu of Special Medical services, All of wich we never saw a bill. Amy is

also exetremely developmently delayed. It wasn't till her 2nd birthday that

she started to show any interest in even trying to play with toys. this past

year has been amazing. Its almost like she's been progressing like she

should have her first year. seems like everytime one of her therapists

come(once a week) i have something new that she's doing to tell them about!

She was always so shy and sweet(still is!) quiet and just happy with

whatever was going on. In a matter of 1 month, She got her walker and took

off with more self confidence than i've ever seen. I thought i'd never see

the day when this innocent, quiet little girl woul throw herself on the

floor kicking and screaming over a toy, or over anything for that matter!

Now i see it everyday! Again I hope this helps! Kerrie Amy 3 ChARgE

Re: (no subject)

>From: RobinAlanT@...

>

>:

>

>YAY!!! - I have found another Virginia CHARGE family. I am new to the list

>(about a month & a half now). My daughter Ally with Charge is extremely

>handicapped (deaf/blind , extreme developmental delay, seizure disorder)

when

>I called to get SSI benefits i was denied based on FAMILY income. The

cutoff

>for a family of three was somewhere in the low $30,000 dollar a year

range -

>i think. Was i told wrong - Ally obviously has no income but all i had was

a

>phone conversation with an SSI person i never pursued it further (i thought

>there was no hope) Do you know differently. Sure would be nice to get

some

>help. Also are you having to pay for Early Intervention - we are.

>

>Robin mom to Ally (14 mths) ChARgE

>

>

>>For information about the CHARGE Syndrome Foundation or to become a member

please contact marion@....

>

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Robin, hi i am from Virgina where are you at . Sherry mom to Miranda (5

CHARGE) wife to

Re: (no subject)

> From: RobinAlanT@...

>

> :

>

> YAY!!! - I have found another Virginia CHARGE family. I am new to the

list

> (about a month & a half now). My daughter Ally with Charge is extremely

> handicapped (deaf/blind , extreme developmental delay, seizure disorder)

when

> I called to get SSI benefits i was denied based on FAMILY income. The

cutoff

> for a family of three was somewhere in the low $30,000 dollar a year

range -

> i think. Was i told wrong - Ally obviously has no income but all i had

was a

> phone conversation with an SSI person i never pursued it further (i

thought

> there was no hope) Do you know differently. Sure would be nice to get

some

> help. Also are you having to pay for Early Intervention - we are.

>

> Robin mom to Ally (14 mths) ChARgE

>

>

> > For information about the CHARGE Syndrome Foundation or to become a member

please contact marion@....

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Jeanie,

That's wonderful news! Look out, there is a whole new world out there when

they are on their feet! didn't walk until she was 8 1/2 and is still

making up for lost time.

Sheryl, Mom to Mitch 13 and 13 CHARGE

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DeeDee,

That is wonderful news! I am so glad for you and Bryce. I hope everything

works out well with the implant, my daughter is not eligible as her hearing loss

is not profound in both ears, but had they been, we'd have gone that route as

well.

Mom to Kennedy 20 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

(no subject)

From: JDDUngetheim@...

We had big news today. Bryce, who is profoundly deaf in both ears, just got

approved for a cochlear implant. He will have surgery on December 3rd and

then get his electrode " hooked up " right around Christmastime. He will hear

Christmas carols and bells and Ho Ho Ho! Suddenly I am in the Christmas

spirit! I'll keep you all posted as to our progress. Has anyone out there

gone this route?

Deedee, who can't wait to tell my son that I love him! Mom to Blake (5)

and Bryce (21/2), CHaRGE)

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

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  • 6 years later...
Guest guest

Welcome Amy!

Sounds like you're doing awesome!

This is a pretty great group! We do challenges to keep you motivated and friendships to keep you strong.

You're right God is great! anything is possible with him!

Good to have you.

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