RE: Hello & Need some advice

August 15, 2004

its called disabled Medicaid . he use to get SSI and that was all

the income that counted for his Medicaid now he gets nothing. I

think you just have to prove that he is disabled which with wes that

is physically with all the charge things and a slight mental delay.

ask a Medicaid worker to help you get it that way

KayRena

Holweger wrote:

> How does Wesley qualify on his own income? Cameron is only four

> years old????

>

> kayrenanew wrote:have you looked into

> getting Medicaid just for your charge child?

> we get too much money from husbands income for family to be on

> Medicaid but wesley qualifies for disabled income on his own

> income.

> KayRena

>

> Holweger wrote:

>

> > Wow -- first of all let me thank everybody for all your replies.

> You

> > all have been real helpful and I'm going to use your ideas. I'm

> going

> > to answer questions all in one reply......

> >

> > Cameron uses a formula called Compleat which is a special formula

> just

> > for tube feedings. We've tried Pediasure but Cam would always throw

>

> > up with it. I've looked into WIC and Medicaid, but my husband makes

>

> > too much money. Sometimes I just want to tell these people " If I

> made

> > too much money, I wouldn't be asking you for help! " Our insurance

> > does help us with the formula but we have a high deductible($4000

> per

> > person) and they pay very little on it. In fact we're having

> > problems with the insurance company paying the correct amount.

> >

> > I've been looking into the vital-slim therapy lately. Alot of you

> > mentioned that your child doesn't feel hunger with a g-tube.

> Cameron

> > does b/c if we are late feeding him he gets very cranky and then

> he's

> > fine after we feed him.

> >

> > Thanks again!!!!!!!!!!!!!!!!!!!

> >

> > Michele Westmaas wrote:

> > -

> > My daughter, Aubrie, had a Gtube for her first year and a half. She

>

> > had

> > it removed before her 2nd birthday. She also had failure to thrive,

>

> > swallowing difficulties, and GE reflux. I would have to look back

> at

> > my

> > notes from the time for details. I remember thinking she'd never

> eat.

> >

> > She'd vomit just at the sight of the spoon. She never did master

> the

> > suck-swallow-breath thing with the bottle but went directly to a

> sippy

> >

> > cup. When she first ate foods, she would pocket the difficult

> > textures

> > in between her lower lip and gum. I don't know how she could

> > separate

> > the hull from the popcorn, the meat from the veggies, etc, but she

> > did.

> > Then she'd spit the " yuckies " in a napkin. Eventually, she had less

>

> > and

> > less yuckies pocketed and finally was able to eat everything. There

>

> > are

> > very few foods that she does not manage fine now. In fact, I can't

> > think of one off hand.

> >

> > We were stumped as to how to go from the tube to oral feeding. The

> > ped

> > didn't have any good suggestions except that she gave us her

> blessing

> > to

> > do whatever during the spring when we expected no ear infections and

>

> > colds and could best afford any weight loss that might occur during

> > the

> > transition. So the SLP and I figured out a plan together. We did

> > overnight tube feedings that ended early enough in the night so that

>

> > she'd hopefully wake up somewhat hungry. Then we did only oral

> > feeding

> > during the day.

> >

> > Some dr's had suggested oral feeding at meals followed by a tube

> > feeding

> > to " top off " whatever the child didn't take orally. But that didn't

>

> > make sense to us cuz then she'd never really get that feeling of

> > hunger. I don't know how we did it, but we did make the transition.

>

> > At

> > the time, we gave Aubrie Pediasure instead of milk to get as many

> > calories in as possible. Now I wish we'd never given up the

> Pediasure

> >

> > cuz she's still very small but now won't take the taste of it.

> >

> > So-- Perhaps I didn't give you much specific help, but I hope I gave

>

> > you

> > some evidence that it is possible to wean from the tube to oral

> > feeding. It will take work and it will be frustrating. In my

> > experience, I needed a supportive SLP to work with me since the dr's

>

> > weren't so helpful. Our docs didn't care so much if she ever ate

> > orally. They didn't care how she got it, they just wanted her to

> get

> > the nutrition. From a mom's point of view, the way the nutrition is

>

> > taken in is a huge issue.

> >

> > Best of luck to you and welcome to the list. I'm sure you'll find

> > many

> > helpful posts here.

> >

> > Michele W

> > Aubrie's mom (6 yrs) CHaRgE

> >

> > 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!

> >

August 15, 2004

,

Forgot to mention, Kennedy is 6 and she is about 43 pounds, so she isn't

huge but she's healthy and in her 'range'. To see a recent pic, go to

http://ca.geocities.com/weirfamilyrogers/kennedy.html if you want an

idea of her size.

Weir

Mom to Kennedy 6 yr old with CHARGE, 15, 13 and wife to Graeme.

New Brunswick, Canada

Weir homepage: http://ca.geocities.com/weirfamilyrogers

CHARGE SYNDROME CANADA: http://www.chargesyndrome.ca

Re: Hello & Need some advice

>

> Wow -- first of all let me thank everybody for all your replies. You

all

> have been real helpful and I'm going to use your ideas. I'm going to

answer

> questions all in one reply......

>

> Cameron uses a formula called Compleat which is a special formula just

for

> tube feedings. We've tried Pediasure but Cam would always throw up with

it.

> I've looked into WIC and Medicaid, but my husband makes too much money.

> Sometimes I just want to tell these people " If I made too much money, I

> wouldn't be asking you for help! " Our insurance does help us with the

> formula but we have a high deductible($4000 per person) and they pay

very

> little on it. In fact we're having problems with the insurance company

> paying the correct amount.

>

> I've been looking into the vital-slim therapy lately. Alot of you

> mentioned that your child doesn't feel hunger with a g-tube. Cameron

does

> b/c if we are late feeding him he gets very cranky and then he's fine

after

> we feed him.

>

> Thanks again!!!!!!!!!!!!!!!!!!!

>

> Michele Westmaas wrote:

> -

> My daughter, Aubrie, had a Gtube for her first year and a half. She had

> it removed before her 2nd birthday. She also had failure to thrive,

> swallowing difficulties, and GE reflux. I would have to look back at my

> notes from the time for details. I remember thinking she'd never eat.

> She'd vomit just at the sight of the spoon. She never did master the

> suck-swallow-breath thing with the bottle but went directly to a sippy

> cup. When she first ate foods, she would pocket the difficult textures

> in between her lower lip and gum. I don't know how she could separate

> the hull from the popcorn, the meat from the veggies, etc, but she did.

> Then she'd spit the " yuckies " in a napkin. Eventually, she had less and

> less yuckies pocketed and finally was able to eat everything. There are

> very few foods that she does not manage fine now. In fact, I can't

> think of one off hand.

>

> We were stumped as to how to go from the tube to oral feeding. The ped

> didn't have any good suggestions except that she gave us her blessing to

> do whatever during the spring when we expected no ear infections and

> colds and could best afford any weight loss that might occur during the

> transition. So the SLP and I figured out a plan together. We did

> overnight tube feedings that ended early enough in the night so that

> she'd hopefully wake up somewhat hungry. Then we did only oral feeding

> during the day.

>

> Some dr's had suggested oral feeding at meals followed by a tube feeding

> to " top off " whatever the child didn't take orally. But that didn't

> make sense to us cuz then she'd never really get that feeling of

> hunger. I don't know how we did it, but we did make the transition. At

> the time, we gave Aubrie Pediasure instead of milk to get as many

> calories in as possible. Now I wish we'd never given up the Pediasure

> cuz she's still very small but now won't take the taste of it.

>

> So-- Perhaps I didn't give you much specific help, but I hope I gave you

> some evidence that it is possible to wean from the tube to oral

> feeding. It will take work and it will be frustrating. In my

> experience, I needed a supportive SLP to work with me since the dr's

> weren't so helpful. Our docs didn't care so much if she ever ate

> orally. They didn't care how she got it, they just wanted her to get

> the nutrition. From a mom's point of view, the way the nutrition is

> taken in is a huge issue.

>

> Best of luck to you and welcome to the list. I'm sure you'll find many

> helpful posts here.

>

> Michele W

> Aubrie's mom (6 yrs) CHaRgE

>

> 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!

>

August 16, 2004

Your daughter is absolutely precious!!!!

Thanks for the pic!!!

Weir wrote: