-----Original Message-----
From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com]On Behalf Of Adele
Sent: Monday, July 31, 2006 9:48 PM
To: MD-List@yahoogroups.com
Subject: RE: [MD-List] Re: seating problem

Can you believe this.  I sent this email way back on the 17^th of June and it’s just showing up today, July 31.

 

Adele

 

---

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Adele
Sent: Saturday, June 17, 2006 7:48 AM
To: MD-List@yahoogroups.com
Subject: RE: [MD-List] Re: seating problem

 

Have your DME supplier check to make sure your son is in the right sized chair.  We had this problem when Jason got his last power chair.  No matter what cushion he tried, he was all very uncomfortable.  After about 1 ½ years of trying to find something he could use, we discovered he was sitting in a chair that was 18 inch wide, when he is only 16.  What happened is the cushion is designed to hit certain point on the bottom.  If the chair is too wide, then the cushion is also too wide and will not support the bottom the way it is suppose to.

 

Adele

 

---

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of George
Sent: Saturday, June 17, 2006 1:52 AM
To: MD-List@yahoogroups.com
Subject: [MD-List] Re: seating problem

 

Diana,

When we were looking for a seat cushion beyond what came with the
powerchair, our provider brought us: Roho, gel, honeycomb and tempur.
We had them for a week or so to try out. We weren't very happy with
any. My son had already started developing pressure sores. We needed
something fast and nothing was right. It was extremely frustrating.

Looking back, even though the major types of systems were represented,
I don't think the provider brought us a good set of cushions for the
particular individual he was dealing with (child, light weight, and so
on).

For example: The Roho he brought was a much-used two chamber low
profile Roho. We couldn't get it set up so it was comfortable. My son
couldn't explain what was wrong, only that it didn't feel good. I
couldn't figure it out myself. We later had a Roho sales rep come who
had us try a four-chamber high profile Roho and it was very good right
off the bat. We went for that and are still happy with it. If I hadn't
already heard about Rohos from people on the various lists, I wouldn't
have given Roho a second thought.

Now, after realizing the Roho our provider brought was just not the
right Roho, I ask myself, was the gel cushion really the right gel
cusion for a child my son's age and weight? Same question for the
honeycomb and tempur. Some people like honeycomb. My son found the one
we tried to be very hard. Are there different types of honeycomb for
people of different weights? I wonder. It would make sense if there
were. The one we had was more super sized than child sized. Maybe it
was made for people much heavier than a child. Tempur and other
pressure-memory systems need to be broken in. What does that mean for
the process of trying to decide what to get? While we're happy with
the Roho we ended up with, I wonder what other cushions would have
also been good, had we been given better advice.

In any case, in retrospect, the provider definitely did not do a good
job of advising us on cushions. So the two cents worth of advice
stemming from my experience are: See if you can find a good seating
specialist in your area who can advise you independently of any
particular brand or type of system. If you find one, after you get the
perfect cushion, convice them to move to where I live ;-)

George

--- In MD-List@yahoogroups.com, "Diana Howe" <diana.howe@...> wrote:
>
> Hi all!
>
> I haven't had any internet for over three weeks and I really missed
my mail. My box got soo full a lot of mail just bounced.
>
> Anyway one of the reasons I wanted to get on so bad is we are trying
to figure out what kind of seating to get Christopher because he has
been having problems for some time. He has a roho air with two
separate sections that you can fill or let out separately. The
problem is its not working that great any more and so we asked to try
different seating and they brought out the roho with 4 different
sections. This is a good seat and I know a lot of people on the list
have said in the past that they like it. The problem is we have had
for 3 weeks and Christopher is still sore, bum hurts and tailbone
hurt. I know how to adjust the air and to make sure he is not hitting
bottom but its not working. Now they say there is no other seat for
kids with DMD that is better or that Christopher would like. I don't
believe this and that brings me to my question, Does any body know of
other seats that might work in our situation because I just don't know
any different kinds of seats.
> Help!
>
> Diana
>

Thanks for all the information Arlene.  I am sorry to hear things haven't
improved much with your son's situation.  That is really sad.  My heart
goes out to you.  I hope your son is okay.

My husband's family is dealing with an uncle who has Bipolar.  He is a
lawyer and has gone off the deep end and is suing family members over
trust fund issues.  Not exactly the same thing as what you are dealing with,
but I see how all this is hurting my in-laws.  It is hard to get through to
those you are trying to help sometimes.

Hugs,
DeeDee Fuller

----- Original Message -----
From: "Arlene " <breezytimber@...>
To: <MD-List@yahoogroups.com>
Sent: Monday, July 31, 2006 5:49 PM
Subject: [MD-List] Re: SSI

Just got my BS and i wasnt even required to turn up! Just called these people
(801) 697 0461, filled out a few forms and a bit of paperwork and was accredited
within 3 weeks at an internationally recognised Uni! How good is that!

The special needs it what you need, otherwise they would loose
everything and be on their own.
Arlene

The problem is if you have the will, which we did.  You have to
worry about the goverment finding ways to get at it.  The bank only
administers the will, depending on how it reads the person has to do
the checking to be sure the items are not covered by the state. Our
will definately said it is the person (in the trust) not the trustee
(bank) reasponsibility to know what the state pays or will not pay.
If the state knows he has other means of support they are going to
pay as little as possible.  For some equipment, if you fight enough
they will pay for, if you have a trust they will make the trust pay.
This is a tricky situation. Then it you have a will and your
situation changes do you want someone who is a friend of the person
make or suggest what it is spent on. I thought about leaving my
other son handle the funds but if he had it invested in his name and
had bad credit or died the money could be lost.  I really would like
some other input on this, if anyone has experience. Actually we
don't know how much any of us will have left, we have our auto's,
house or what is left after bills are paid, furniture, if we go into
a nursing home, that is the end of the trust. Most places will not
handle a trust unless it is over $100,000.00, plus they charge high
rates to handle it.  My husband works in the Trust Dept of a bank.
Seems it's hard to protect our son when we are gone. Don't look like
I am doing to good while I am here.  Since he moved, Heaven know
what is going on or what care he is getting. The trustee may not
even know where to find him when I die. In my case why have a
trust.
Arlene

--- In MD-List@yahoogroups.com, "Adele" <jasona65@...> wrote:
>
> Great link Nick.  A special needs trust is more
> important that mom and dad having a will.  If it
> weren't for the fact that not one of my relatives
> wants to be put on the trust, I'd have this done
> many years ago.
>
>
>
> Adele
>
>
>
>   _____
>
> From: MD-List@yahoogroups.com
> [mailto:MD-List@yahoogroups.com] On Behalf Of
> nicksgrandma12000
> Sent: Thursday, July 27, 2006 3:33 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] Re: SSI
>
>
>
> Here is a website that may be helpful:
> http://www.fragilex
> <http://www.fragilex.org/html/trust.htm>
> .org/html/trust.htm
>
> --- In MD-List@yahoogroups
> <mailto:MD-List%40yahoogroups.com> .com, "Seth &
> DeeDee Fuller"
> <sethfuller@> wrote:
> >
> > Hello Everyone,
> > Just wanted to say my son got his 1st check for
> SSI this week. We
> went and opened a
> > checking account for him yesterday.
> >
> > Forgive me if this had been covered before, I
> looked and couldn't
> find anything on my own
> > about this- But could someone advise me on how
> he should take care
> of his money. Feel
> > free to point me to a link where maybe this was
> posted already.
> >
> > He will pay $250 for rent, but what to do with
> the rest? He wanted
> to save it in case he
> > wants to buy guitar equipment or eventually go
> to school etc. But
> will SS look into how he
> > is spending his money and want receipts? Will he
> be audited? Is
> it a bad idea to have extra
> > money saved in his checking account? And is a
> savings account a
> bad idea? Will they think
> > he doesn't need it if he can save money and
> reduce his checks?
> Help!
> >
> > Thanks in advance!
> > DeeDee Fuller
> >
>

You could always put it in your name in case he needs it later.
Arlene

--- In MD-List@yahoogroups.com, jasona65@... wrote:
>
> No DeeDee, the governmant won't be looking into how he sepnds his
money.  The only thing they are worried is how he saves his money.
Jason has a savings account.  Each month, I deposit his check and
withdraw money to pay all of his monthly bills, which is about the
entire check..  I make sure that his balance never gets too close to
$2,000.  If it does, then we spend it.  Last month, we spent his
money on a cruise.
>
> Adele
>
> -------------- Original message --------------
> From: Jen F <buddyfozzy@...>
> In the checking account he should keep a low balance to use for
bills, etc, and the savings account is where he can keep
the "extra".  For this money not to be counted against him though,
the savings account will need to be in someone else's (a trusted
person's) name.
> Jen, 25, SMA 2
>
> Seth & DeeDee Fuller <sethfuller@...> wrote:
> Hello Everyone,
> Just wanted to say my son got his 1st check for SSI this week.  We
went and opened a
> checking account for him yesterday.
>
> Forgive me if this had been covered before, I looked and couldn't
find anything on my own
> about this- But could someone advise me on how he should take care
of his money.  Feel
> free to point me to a link where maybe this was posted already.
>
> He will pay $250 for rent, but what to do with the rest?  He
wanted to save it in case he
> wants to buy guitar equipment or eventually go to school etc.  But
will SS look into how he
> is spending his money and want receipts?  Will he be audited?  Is
it a bad idea to have extra
> money saved in his checking account?  And is a savings account a
bad idea?  Will they think
> he doesn't need it if he can save money and reduce his checks?
Help!
>
> Thanks in advance!
> DeeDee Fuller
>
>
>
>
>
> How low will we go? Check out Yahoo! Messenger's low PC-to-Phone
call rates.
>

I think they send a letter or ask if you have an account, we would
have said no, because my name was on it.  It is now closed.  Mike's
one check was in the account but I paid a large computer repair with
it, and his bills, then I closed it, a couple dollars was left. I
also closed a charge card in my name that he could use. His second
check was sent to my son's and it was delivered to him.  Now I guess
he has his friends name on his account. I did not want
responsibility for who may have got hold ot it and charged on it. My
other son got a call from the park service where he is at camp  they
found his wallet in the park the first day he was at camp. The
ranger was suppose to have delivered it to him at camp, I don't know
if it had money in it.  I can't see how it could have fell out of
his back pack in a zipper pouch. what a mess things can be.
Arlene


--- In MD-List@yahoogroups.com, jasona65@... wrote:
>
> Nope, the only thing we receive from SSI is his checks.  I spend
all of his money on things for Jason, but I've never been asked to
account for any of it.
>
> Adele
>
> -------------- Original message --------------
> From: <hhjgreene@...>
> Adele, don't you recieve something from ssi asking how his money
was spent and if any were saved?  We do and everyone else I know
that gets ssi does too.  I just get Eric's checks and spend it
however I see fit.  He gets video games, computer games, rented
games clothes, food, housing ext...So, I just devide it up on the
paper. They want you to spend the money.
> Holly
> jasona65@... wrote:
> No DeeDee, the governmant won't be looking into how he sepnds his
money.  The only thing they are worried is how he saves his money.
Jason has a savings account.  Each month, I deposit his check and
withdraw money to pay all of his monthly bills, which is about the
entire check..  I make sure that his balance never gets too close to
$2,000.  If it does, then we spend it.  Last month, we spent his
money on a cruise.
>
> Adele
>
> -------------- Original message --------------
> From: Jen F <buddyfozzy@...>
>
> In the checking account he should keep a low balance to use for
bills, etc, and the savings account is where he can keep
the "extra".  For this money not to be counted against him though,
the savings account will need to be in someone else's (a trusted
person's) name.
> Jen, 25, SMA 2
>
> Seth & DeeDee Fuller <sethfuller@...> wrote:
> Hello Everyone,
> Just wanted to say my son got his 1st check for SSI this week.  We
went and opened a
> checking account for him yesterday.
>
> Forgive me if this had been covered before, I looked and couldn't
find anything on my own
> about this- But could someone advise me on how he should take care
of his money.  Feel
> free to point me to a link where maybe this was posted already.
>
> He will pay $250 for rent, but what to do with the rest?  He
wanted to save it in case he
> wants to buy guitar equipment or eventually go to school etc.  But
will SS look into how he
> is spending his money and want receipts?  Will he be audited?  Is
it a bad idea to have extra
> money saved in his checking account?  And is a savings account a
bad idea?  Will they think
> he doesn't need it if he can save money and reduce his checks?
Help!
>
> Thanks in advance!
> DeeDee Fuller
>
>
>
>
>
> How low will we go? Check out Yahoo! Messenger's low PC-to-Phone
call rates.
>
>
>
>
>
>
> Do you Yahoo!?
> Everyone is raving about the all-new Yahoo! Mail Beta.
>

It is really better to have the checking and saving account in the
mother or father's name, then the son's name on it.  That way you may
be able to get away without having it audited, you can say it is the
parent account. The person on SSI will have to watch their SSI does
not go over the allowed amount. Actually even though my sons check was
being direct deposited he would take out his monthy spending, etc.
right away and they didn't know who's money was left.  You can say his
name is on it for convenience only.  That's what we did and we never
had a problem with SSI having to check his account. They must limit
the amount of money they have or SSI will deduct a certain percent
from their SSI check.
Arlene

Great article.  Thank you for sharing.

Adele, Thank you for the your invitation to post more often.  I
already feel like I know you personally and a lot of other people in
this group.  Sorry I haven't been more forthcoming, I get more
information from all of you and most of the time have nothing to add,
but I will try to make my presence known more often. I wish my
daughter would get on this list.  She rather I relate new information
than getting on any message boards herself.

Marilyn



--- In MD-List@yahoogroups.com, jasona65@... wrote:
>
> Thanks Marilyn.  We all try to do our best.  You should post more
often.  It's good to get the prespective for another family menber.
>
> Adele
>
> -------------- Original message --------------
> From: "nicksgrandma12000" <slickmari@...>
> Adele, It's a difficult issue. As everyone (the kids and parents)
> gets older it's another issue that needs to be dealt with. My
> daughter has the same problem, except that my grandson doesn't have
> any brothers or sisters. He does have an aunt and uncle on each
side
> of the family and I know that they can be trusted they are both
very
> responsible people and would do anything for him, they are almost
the
> same asge as my daughter and son-in-law. I don't know what they are
> going to do? He's only 11, but time goes so quickly, it's important
> to tidy things up in case something happens to his parents. It's
> hard to think that way, but we have to be realistic.
>
> You seem to have a good head on your shoulders and you are doing a
> remarkable job. I have learned a lot from you. I don't usually step
> in on these message boards unless I have something to offer.
>
> Marilyn
>
> --- In MD-List@yahoogroups.com, "Adele" <jasona65@> wrote:
> >
> > Yes, I'm aware of that, but you still need someone
> > who is willing to be that and you trust that
> > person. I don't at all feel comfortable making a
> > lawyer or some other professional person , who I
> > do not know at all, the trustee. At this point.
> > I'm not sure what I'll do. Plus there is also the
> > person to either do or help with the daily care
> > giving.
> >
> >
> >
> > Jason does have an older brother, who just by
> > default will fill that roll when I'm no longer
> > here or able to care for Jason.
> >
> >
> >
> > Adele
> >
> >
> >
> > _____
> >
> > From: MD-List@yahoogroups.com
> > [mailto:MD-List@yahoogroups.com] On Behalf Of
> > nicksgrandma12000
> > Sent: Friday, July 28, 2006 10:02 AM
> > To: MD-List@yahoogroups.com
> > Subject: [MD-List] Re: SSI
> >
> >
> >
> > You don't need a realative to be a trustee, you
> > can have a lawyer, a
> > financial adisor or a bank as a trustee. I think
> > you can have a
> > special needs account for your son with you as a
> > trustee for now.
> >
> > Marilyn
> > Grandma of Nicolas with DMD (11 years old)
> >
> > --- In MD-List@yahoogroups
> > <mailto:MD-List%40yahoogroups.com> .com, "Adele"
> > <jasona65@> wrote:
> > >
> > > Great link Nick. A special needs trust is more
> > > important that mom and dad having a will. If it
> > > weren't for the fact that not one of my
> > relatives
> > > wants to be put on the trust, I'd have this done
> > > many years ago.
> > >
> > >
> > >
> > > Adele
> > >
> > >
> > >
> > > _____
> > >
> > > From: MD-List@yahoogroups
> > <mailto:MD-List%40yahoogroups.com> .com
> > > [mailto:MD-List@yahoogroups
> > <mailto:MD-List%40yahoogroups.com> .com] On Behalf
> > Of
> > > nicksgrandma12000
> > > Sent: Thursday, July 27, 2006 3:33 PM
> > > To: MD-List@yahoogroups
> > <mailto:MD-List%40yahoogroups.com> .com
> > > Subject: [MD-List] Re: SSI
> > >
> > >
> > >
> > > Here is a website that may be helpful:
> > > http://www.fragilex
> > > <http://www.fragilex
> > <http://www.fragilex.org/html/trust.htm>
> > .org/html/trust.htm>
> > > .org/html/trust.htm
> > >
> > > --- In MD-List@yahoogroups
> > > <mailto:MD-List%40yahoogroups.com> .com, "Seth &
> > > DeeDee Fuller"
> > > <sethfuller@> wrote:
> > > >
> > > > Hello Everyone,
> > > > Just wanted to say my son got his 1st check
> > for
> > > SSI this week. We
> > > went and opened a
> > > > checking account for him yesterday.
> > > >
> > > > Forgive me if this had been covered before, I
> > > looked and couldn't
> > > find anything on my own
> > > > about this- But could someone advise me on how
> > > he should take care
> > > of his money. Feel
> > > > free to point me to a link where maybe this
> > was
> > > posted already.
> > > >
> > > > He will pay $250 for rent, but what to do with
> > > the rest? He wanted
> > > to save it in case he
> > > > wants to buy guitar equipment or eventually go
> > > to school etc. But
> > > will SS look into how he
> > > > is spending his money and want receipts? Will
> > he
> > > be audited? Is
> > > it a bad idea to have extra
> > > > money saved in his checking account? And is a
> > > savings account a
> > > bad idea? Will they think
> > > > he doesn't need it if he can save money and
> > > reduce his checks?
> > > Help!
> > > >
> > > > Thanks in advance!
> > > > DeeDee Fuller
> > > >
> > >
> >
>

I just read something you wrote about a Mic Key G button and how
difficult it is to get rid of gas. Is a physical belch or the
passing of gas impossible with a G or J tube?

In Him Forever,
Andrew

--- In MD-List@yahoogroups.com, BracinKnee@... wrote:
>
> Hi
>
> I am a caregiver to MJ, who has Spinal Muscular Atrophy. She has
a  gtube
> and a jtube and would be more than willing to help answer any
questions  you
> might have.
>
> Brenda
> caregiver to MJ, 18, SMA type  1
> _http://www.mjthesmaqueen.com/_ (http://www.mjthesmaqueen.com/)  -
   MJ's new
> website
> _http://www.our-sma-angels.com/Margaret/_
> (http://www.our-sma-angels.com/Margaret/)  -  MJ's 1st website
> _http://www.caringbridge.org/ny/mjpurk_
> (http://www.caringbridge.org/ny/mjpurk)  -  MJ's journal
> _http://www.our-sma-angels.com/b4sma_ (http://www.our-sma-
angels.com/b4sma)
> -  MJ's organization
> _http://www.caringbridge.org/ny/b4sma_
(http://www.caringbridge.org/ny/b4sma)
>  -  B4SMA Information
>
>
> Having courage does not mean that we  are unafraid.
> Having courage and showing courage means we face our  fears.
> We are able to say, "I have fallen, but I will get up."
> ---Maya  Angelou---
>

Do you mind if I ask you what your feeding schedule is like? And
what position are you in when you do it? I probably need to get one
myself. Also how often do you change it? And is it another surgical
procedure?

In Him Forever,
Andrew

--- In MD-List@yahoogroups.com, "Kevin M. Rudolph" <turbokev@...>
wrote:
>
> I had to get one in 2003
>
>
> Kevin M. Rudolph
> Louisville, Kentucky 40214
> E-Mail:  turbokev@...
> Web site:  http://www.turbokev.com
> Instant Messengers:
>      AOL:  kyprincecharming           ICQ:  28414413
>      MSN:  turbokmr@...       Yahoo:  turbokev
>

-------------- Original message --------------
From: "nicksgrandma12000" <slickmari@...>

Adele, It's a difficult issue. As everyone (the kids and parents)
gets older it's another issue that needs to be dealt with. My
daughter has the same problem, except that my grandson doesn't have
any brothers or sisters. He does have an aunt and uncle on each side
of the family and I know that they can be trusted they are both very
responsible people and would do anything for him, they are almost the
same asge as my daughter and son-in-law. I don't know what they are
going to do? He's only 11, but time goes so quickly, it's important
to tidy things up in case something happens to his parents. It's
hard to think that way, but we have to be realistic.

You seem to have a good head on your shoulders and you are doing a
remarkable job. I have learned a lot from you. I don't usually step
in on these message boards unless I have something to offer.

Marilyn

--- In MD-List@yahoogr oups.com, "Adele" <jasona65@...> wrote:
>
> Yes, I'm aware of that, but you still need someone
> who is willing to be that and you trust that
> person. I don't at all feel comfortable making a
> lawyer or some other professional person , who I
> do not know at all, the trustee. At this point.
> I'm not sure what I'll do. Plus there is also the
> person to either do or help with the daily care
> giving.
>
>
>
> Jason does have an older brother, who just by
> default will fill that roll when I'm no longer
> here or able to care for Jason.
>
>
>
> Adele
>
>
>
> _____
>
> From: MD-List@yahoogroups.com
> [mailto:MD-List@yahoogroups.com] On Behalf Of
> nicksgrandma12000
> Sent: Friday, July 28, 2006 10:02 AM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] Re: SSI
>
>
>
> You don't need a realative to be a trustee, you
> can have a lawyer, a
> financial adisor or a bank as a trustee. I think
> you can have a
> special needs account for your son with you as a
> trustee for now.
>
> Marilyn
> Grandma of Nicolas with DMD (11 years old)
>
> --- In MD-List@yahoogroups
> <mailto:MD-List%40yahoogroups.com> .com, "Adele"
> <jasona65@> wrote:
> >
> > Great link Nick. A special needs trust is more
> > important that mom and dad having a will. If it
> > weren't for the fact that not one of my
> relatives
> > wants to be put on the trust, I'd have this done
> > many years ago.
> >
> >
> >
> > Adele
> >
> >
> >
> > _____
> >
> > From: MD-List@yahoogroups
> <mailto:MD-List%40yahoogroups.com> .com
> > [mailto:MD-List@yahoogroups
> <mailto:MD-List%40yahoogroups.com> .com] On Behalf
> Of
> > nicksgrandma12000
> > Sent: Thursday, July 27, 2006 3:33 PM
> > To: MD-List@yahoogroups
> <mailto:MD-List%40yahoogroups.com> .com
> > Subject: [MD-List] Re: SSI
> >
> >
> >
> > Here is a website that may be helpful:
> > http://www.fragilex
> > <http://www.fragilex
> <http://www.fragilex.org/html/trust.htm>
> .org/html/trust.htm>
> > .org/html/trust.htm
> >
> > --- In MD-List@yahoogroups
> > <mailto:MD-List%40yahoogroups.com> .com, "Seth &
> > DeeDee Fuller"
> > <sethfuller@> wrote:
> > >
> > > Hello Everyone,
> > > Just wanted to say my son got his 1st check
> for
> > SSI this week. We
> > went and opened a
> > > checking account for him yesterday.
> > >
> > > Forgive me if this had been covered before, I
> > looked and couldn't
> > find anything on my own
> > > about this- But could someone advise me on how
> > he should take care
> > of his money. Feel
> > > free to point me to a link where maybe this
> was
> > posted already.
> > >
> > > He will pay $250 for rent, but what to do with
> > the rest? He wanted
> > to save it in case he
> > > wants to buy guitar equipment or eventually go
> > to school etc. But
> > will SS look into how he
> > > is spending his money and want receipts? Will
> he
> > be audited? Is
> > it a bad idea to have extra
> > > money saved in his checking account? And is a
> > savings account a
> > bad idea? Will they think
> > > he doesn't need it if he can save money and
> > reduce his checks?
> > Help!
> > >
> > > Thanks in advance!
> > > DeeDee Fuller
> > >
> >
>

----- Original Message -----

From: Tigger

To: MD-List@yahoogroups.com

Sent: Friday, July 28, 2006 1:40 AM

Subject: Re: [MD-List] Re: feeding tube

Great web site you have there. Great to see someone

with DMD having a good long life.... i have beakers MD and

feel like there is hope for us all reading all of your pages and

see how you are doing and making the most out of life. I am

fighting to get a new power chair from Medi-cal and just about

at the last of it and after 10 months of my old chair being broke

i can see a end coming soon and having a new chair. just have

to get a PT do a write up for me and needing more stuff on my

new chair.... just wanted to email you and say you made my day

for sure... :)

take care....

Greg

 

http://members.tripod.com/~Greg38/MyPage.html

 

----- Original Message -----

From: Kevin M. Rudolph

To: MD-List@yahoogroups.com

Sent: Thursday, July 27, 2006 6:20 PM

Subject: [MD-List] Re: feeding tube

I had to get one in 2003

Kevin M. Rudolph
Louisville, Kentucky 40214
E-Mail: turbokev@insightbb.com
Web site: http://www.turbokev.com
Instant Messengers:
AOL: kyprincecharming ICQ: 28414413
MSN: turbokmr@hotmail.com Yahoo: turbokev

---

No virus found in this incoming message.
Checked by AVG Free Edition.
Version: 7.1.394 / Virus Database: 268.10.4/402 - Release Date: 7/27/2006

---

No virus found in this outgoing message.
Checked by AVG Free Edition.
Version: 7.1.394 / Virus Database: 268.10.4/402 - Release Date: 7/27/2006

Adele, It's a difficult issue.  As everyone (the kids and parents)
gets older it's another issue that needs to be dealt with.  My
daughter has the same problem, except that my grandson doesn't have
any brothers or sisters.  He does have an aunt and uncle on each side
of the family and I know that they can be trusted they are both very
responsible people and would do anything for him, they are almost the
same asge as my daughter and son-in-law. I don't know what they are
going to do?  He's only 11, but time goes so quickly, it's important
to tidy things up in case something happens to his parents.  It's
hard to think that way, but we have to be realistic.

You seem to have a good head on your shoulders and you are doing a
remarkable job.  I have learned a lot from you.  I don't usually step
in on these message boards unless I have something to offer.

Marilyn





--- In MD-List@yahoogroups.com, "Adele" <jasona65@...> wrote:
>
> Yes, I'm aware of that, but you still need someone
> who is willing to be that and you trust that
> person. I don't at all feel comfortable making a
> lawyer or some other professional person , who I
> do not know at all, the trustee.  At this point.
> I'm not sure what I'll do.  Plus there is also the
> person to either do or help with the daily care
> giving.
>
>
>
> Jason does have an older brother, who just by
> default will fill that roll when I'm no longer
> here or able to care for Jason.
>
>
>
> Adele
>
>
>
>   _____
>
> From: MD-List@yahoogroups.com
> [mailto:MD-List@yahoogroups.com] On Behalf Of
> nicksgrandma12000
> Sent: Friday, July 28, 2006 10:02 AM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] Re: SSI
>
>
>
> You don't need a realative to be a trustee, you
> can have a lawyer, a
> financial adisor or a bank as a trustee. I think
> you can have a
> special needs account for your son with you as a
> trustee for now.
>
> Marilyn
> Grandma of Nicolas with DMD (11 years old)
>
> --- In MD-List@yahoogroups
> <mailto:MD-List%40yahoogroups.com> .com, "Adele"
> <jasona65@> wrote:
> >
> > Great link Nick. A special needs trust is more
> > important that mom and dad having a will. If it
> > weren't for the fact that not one of my
> relatives
> > wants to be put on the trust, I'd have this done
> > many years ago.
> >
> >
> >
> > Adele
> >
> >
> >
> > _____
> >
> > From: MD-List@yahoogroups
> <mailto:MD-List%40yahoogroups.com> .com
> > [mailto:MD-List@yahoogroups
> <mailto:MD-List%40yahoogroups.com> .com] On Behalf
> Of
> > nicksgrandma12000
> > Sent: Thursday, July 27, 2006 3:33 PM
> > To: MD-List@yahoogroups
> <mailto:MD-List%40yahoogroups.com> .com
> > Subject: [MD-List] Re: SSI
> >
> >
> >
> > Here is a website that may be helpful:
> > http://www.fragilex
> > <http://www.fragilex
> <http://www.fragilex.org/html/trust.htm>
> .org/html/trust.htm>
> > .org/html/trust.htm
> >
> > --- In MD-List@yahoogroups
> > <mailto:MD-List%40yahoogroups.com> .com, "Seth &
> > DeeDee Fuller"
> > <sethfuller@> wrote:
> > >
> > > Hello Everyone,
> > > Just wanted to say my son got his 1st check
> for
> > SSI this week. We
> > went and opened a
> > > checking account for him yesterday.
> > >
> > > Forgive me if this had been covered before, I
> > looked and couldn't
> > find anything on my own
> > > about this- But could someone advise me on how
> > he should take care
> > of his money. Feel
> > > free to point me to a link where maybe this
> was
> > posted already.
> > >
> > > He will pay $250 for rent, but what to do with
> > the rest? He wanted
> > to save it in case he
> > > wants to buy guitar equipment or eventually go
> > to school etc. But
> > will SS look into how he
> > > is spending his money and want receipts? Will
> he
> > be audited? Is
> > it a bad idea to have extra
> > > money saved in his checking account? And is a
> > savings account a
> > bad idea? Will they think
> > > he doesn't need it if he can save money and
> > reduce his checks?
> > Help!
> > >
> > > Thanks in advance!
> > > DeeDee Fuller
> > >
> >
>

You don't need a realative to be a trustee, you can have a lawyer, a
financial adisor or a bank as a trustee.  I think you can have a
special needs account for your son with you as a trustee for now.

Marilyn
Grandma of Nicolas with DMD (11 years old)


--- In MD-List@yahoogroups.com, "Adele" <jasona65@...> wrote:
>
> Great link Nick.  A special needs trust is more
> important that mom and dad having a will.  If it
> weren't for the fact that not one of my relatives
> wants to be put on the trust, I'd have this done
> many years ago.
>
>
>
> Adele
>
>
>
>   _____
>
> From: MD-List@yahoogroups.com
> [mailto:MD-List@yahoogroups.com] On Behalf Of
> nicksgrandma12000
> Sent: Thursday, July 27, 2006 3:33 PM
> To: MD-List@yahoogroups.com
> Subject: [MD-List] Re: SSI
>
>
>
> Here is a website that may be helpful:
> http://www.fragilex
> <http://www.fragilex.org/html/trust.htm>
> .org/html/trust.htm
>
> --- In MD-List@yahoogroups
> <mailto:MD-List%40yahoogroups.com> .com, "Seth &
> DeeDee Fuller"
> <sethfuller@> wrote:
> >
> > Hello Everyone,
> > Just wanted to say my son got his 1st check for
> SSI this week. We
> went and opened a
> > checking account for him yesterday.
> >
> > Forgive me if this had been covered before, I
> looked and couldn't
> find anything on my own
> > about this- But could someone advise me on how
> he should take care
> of his money. Feel
> > free to point me to a link where maybe this was
> posted already.
> >
> > He will pay $250 for rent, but what to do with
> the rest? He wanted
> to save it in case he
> > wants to buy guitar equipment or eventually go
> to school etc. But
> will SS look into how he
> > is spending his money and want receipts? Will he
> be audited? Is
> it a bad idea to have extra
> > money saved in his checking account? And is a
> savings account a
> bad idea? Will they think
> > he doesn't need it if he can save money and
> reduce his checks?
> Help!
> >
> > Thanks in advance!
> > DeeDee Fuller
> >
>

----- Original Message -----

From: Kevin M. Rudolph

To: MD-List@yahoogroups.com

Sent: Thursday, July 27, 2006 6:20 PM

Subject: [MD-List] Re: feeding tube

I had to get one in 2003

Kevin M. Rudolph
Louisville, Kentucky 40214
E-Mail: turbokev@insightbb.com
Web site: http://www.turbokev.com
Instant Messengers:
AOL: kyprincecharming ICQ: 28414413
MSN: turbokmr@hotmail.com Yahoo: turbokev

---

No virus found in this incoming message.
Checked by AVG Free Edition.
Version: 7.1.394 / Virus Database: 268.10.4/402 - Release Date: 7/27/2006

No virus found in this outgoing message.
Checked by AVG Free Edition.
Version: 7.1.394 / Virus Database: 268.10.4/402 - Release Date: 7/27/2006

I had to get one in 2003


Kevin M. Rudolph
Louisville, Kentucky 40214
E-Mail:  turbokev@...
Web site:  http://www.turbokev.com
Instant Messengers:
      AOL:  kyprincecharming           ICQ:  28414413
      MSN:  turbokmr@...       Yahoo:  turbokev

Both Jen and Adele make great suggestions.  When my checking account gets
near $2,000, we transfer some into a savings account that is in my mother's
name.  SSI doesn't need to know everything.  Just make sure the checking
account doesn't exceed $2,000 because SSI will penalize you.  By saving, I
have been able to buy new computers when I want.


Kevin M. Rudolph
Louisville, Kentucky 40214
E-Mail:  turbokev@...
Web site:  http://www.turbokev.com
Instant Messengers:
      AOL:  kyprincecharming           ICQ:  28414413
      MSN:  turbokmr@...       Yahoo:  turbokev

Thank you very much I'll go and look at it.

Also, thanks to everyone else for educating me a little about SSI!
I'm sure I'll be asking more questions real soon, so stay tuned......LOL!
Have a good day!

DeeDee Fuller

----- Original Message -----
From: "nicksgrandma12000" <slickmari@...>
To: <MD-List@yahoogroups.com>
Sent: Thursday, July 27, 2006 2:32 PM
Subject: [MD-List] Re: SSI


> Here is a website that may be helpful:
> http://www.fragilex.org/html/trust.htm
>

Here is a website that may be helpful:
http://www.fragilex.org/html/trust.htm

--- In MD-List@yahoogroups.com, "Seth & DeeDee Fuller"
<sethfuller@...> wrote:
>
> Hello Everyone,
> Just wanted to say my son got his 1st check for SSI this week.  We
went and opened a
> checking account for him yesterday.
>
> Forgive me if this had been covered before, I looked and couldn't
find anything on my own
> about this- But could someone advise me on how he should take care
of his money.  Feel
> free to point me to a link where maybe this was posted already.
>
> He will pay $250 for rent, but what to do with the rest?  He wanted
to save it in case he
> wants to buy guitar equipment or eventually go to school etc.  But
will SS look into how he
> is spending his money and want receipts?  Will he be audited?  Is
it a bad idea to have extra
> money saved in his checking account?  And is a savings account a
bad idea?  Will they think
> he doesn't need it if he can save money and reduce his checks?
Help!
>
> Thanks in advance!
> DeeDee Fuller
>