Unless you are low income you cannot get SSI until they are 18.  Under
18 parents are reasponsible. Over 18 you don't have to tell them the
parents income. He can also get Medical Assistance at that time and in
Maryland they have a Personal Care program available, if you have a
similar program with caregivers you cannot get it.  However it only
pays $22. per day. They are suppose to stay 2 1/2 hrs and the care
they are suppose to need is bathing, feeding, transferring and several
other things like that.  They pay something like $10. if you don't
meet those requirements.
Arlene

--- In MD-List@yahoogroups.com, "tikioohaha" <mseiuli05@...> wrote:
>
> when is a good time to apply for it? my son is still small but he
also
> has congenital heart disease and a seizure disorder... no daycares
> will take care of him and we have a lot of bills and doctors appts
far
> away... i have no clue what to do next
>

when is a good time to apply for it? my son is still small but he also
has congenital heart disease and a seizure disorder... no daycares
will take care of him and we have a lot of bills and doctors appts far
away... i have no clue what to do next

When going for SSI make sure you tell them you are or will need to
charge board. They do not have to know your income. We had to say we
were charging board when my son started getting SSI.  However that was
20 years ago and we were never questioned again about board ot the
amount.  Back then we said $200. per month. i would increase it if
asked now.
Arlene

yes i was looking for info on feeding tubes and what are side affects
of having one.my brother has md and the drs told him that most likely
he need to get it done. so i was trying fine out some info for him
thanks alot ginger so please let me know , if you can

yes i was looking for info on feeding tubes and what are side affects
of having one.my brother has md and the drs told him that most likely
he need to get it done. so i was trying fine out some info for him
thanks alot ginger so please let me know , if you can

Oh, I forgot to ask.  Make sure they know that you are applying for SSI and not
SSD.  Even though I make this point very clear when I called to make my
appointmernt, they still thought I was applying for SSD.

Adele
  -------------- Original message ----------------------
From: "Seth & DeeDee Fuller" <sethfuller@...>
> It's probably just a Texas thing!  I think the school packet is ridiculous!
> This will slow things
> down even more!  When I told the lady at SS that nobody will be at the school
> until at least the
> beginning of Aug., she didn't believe me.  She said, "Oh, keep trying, someone
> should be there!"
> I told her it is a small country school, and they shut down for the summer.  I
> know this from
> previous years that I would try to contact the school to find out things in
the
> summer.
>
> Why are these things harder in Texas???  Maybe they aren't, it's probably just
> our luck with
> things! LOL!
>
>   ----- Original Message -----
>   From: Adele
>   To: MD-List@yahoogroups.com
>   Sent: Wednesday, June 28, 2006 6:47 PM
>   Subject: RE: [MD-List] Applying for SSI
>
>
>   DeeDee.  I never heard of any of this.  When Jason turned 18, I call Social;
> Security, told then Jason was applying for SSI and they made us a phone
> conference appointment.  I gave then all of the requested information.  The
fact
> that your son has been seen by other doctors should not be a problem.  That
you
> are in the process of changing from pediatrician to adult doctors should not
> matter or hold things up. I never had to fill out anything from the school.
> Most of the questions were about work and why you can't work anymore or get a
> job.
>
>
>
>   Adele
>
>
>
>
> ------------------------------------------------------------------------------
>
>   From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of
> Seth & DeeDee Fuller
>   Sent: Wednesday, June 28, 2006 4:24 PM
>   To: MD-List@yahoogroups.com
>   Subject: [MD-List] Applying for SSI
>
>
>
>   We are in Texas and have been trying to get SSI started for my DMD son who
> turned 18 in April.
>
>
>
>   Just wanted to say how it has been going, and to ask if a couple of things
> sound right.
>
>   We got 2 packets in the mail 2 wks. ago.  One said to be complete by his
> school teacher (He
>
>   graduated already) and the other said something like " Function report for
> child age 6 to 12th
>
>   birthday".  I called and she said she sent the wrong one, and she sent
another
> packet that
>
>   this time says "child age 12 to 18th birthday".  I called again and
explained
> he is 18 and 2 mos.
>
>   She said that is okay, fill it out anyways.  Even though the questions are
> geared as if a parent
>
>   if filling it out, asking questions of the child.  As for the school packet,
I
> said he graduated and
>
>   nobody is at the school until late July or early August.  She said to keep
> calling them and see
>
>   if I can locate someone, that they want it filled out by the Special Ed
Dept.
> Also, yesterday I
>
>   got 2 letters stating to mail in the forms within 10 days or risk being
> denied.  I called and she
>
>   said "Oh, that just means to contact us, and you just did so don't worry
about
> it."  That doesn't
>
>   make any sense.
>
>
>
>   I also opened my big mouth!  I know your not suppose to volunteer anything,
> but I accidentally
>
>   did.  We are in the process of trying to get Cody transferred over to the
> adult MDA clinic.  I
>
>   guess he is between doctors.  It has been almost 7 mos. since his last appt.
> with his Dr.,
>
>   but MDA keeps giving me the run around and tells me they will look into what
> is taking so long,
>
>   but they never call me back!  Anyhow, the lady as SS asked about his Dr.,
and
> I said we are
>
>   getting a new Dr., and she said, "Oh, that may be a problem."  Let's hope
not!
>
>
>
>   I just wanted to know if this is the way it usually goes.  They are so
> frustrating.
>
>
>
>   DeeDee Fuller
>
>
>

-------------- Original message --------------
From: "Seth & DeeDee Fuller" <sethfuller@...>

Thanks Greg.  Yes, I will need to stay on SS, I'm sure!  I haven't really done that

with MDA in trying to switch him to the adult clinic.  They tell me they will call

me back and they never do, and I wait a month or 2.  I think from now on, I'll

call and bug them!  I called yesterday and the man I've been speaking with the

last 3 times, referred me to someone else and said to call back Fri.  Why didn't

he tell me that before?  Honestly!!!! 

 

As far as SS goes, I read somewhere that most people are turned down when

they first apply the 1st time.  I hope that's not the case with us.  What a pain!

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

From: Tigger

To: MD-List@yahoogroups.com

Sent: Wednesday, June 28, 2006 6:50 PM

Subject: Re: [MD-List] Applying for SSI

Sometimes it is a lot of paper work and can go just like you are having a

hard time with it and sounds like bad timing on the new doctor... just get

the papers you need and keep checking with SSI if you need more help.

I know when my sister did this with her son with Beckers it was easy for her,

but she stays right on them and did all there paper work fast. This was just

before he turned 18.... i did not get my ssi until i was 37, i have Beckers also

and this time it was just 4 months to get it and they oked it the first try...

i had tried when i was 18 and 22 and got turned down. Good luck and hope you

can get his SSI soon.

 

Greg

 

http://members.tripod.com/~Greg38/MyPage.html
----- Original Message -----

From: Seth & DeeDee Fuller

To: MD-List@yahoogroups.com

Sent: Wednesday, June 28, 2006 1:24 PM

Subject: [MD-List] Applying for SSI

We are in Texas and have been trying to get SSI started for my DMD son who turned 18 in April.

 

Just wanted to say how it has been going, and to ask if a couple of things sound right.

We got 2 packets in the mail 2 wks. ago.  One said to be complete by his school teacher (He

graduated already) and the other said something like " Function report for child age 6 to 12th

birthday".  I called and she said she sent the wrong one, and she sent another packet that

this time says "child age 12 to 18th birthday".  I called again and explained he is 18 and 2 mos.

She said that is okay, fill it out anyways.  Even though the questions are geared as if a parent

if filling it out, asking questions of the child.  As for the school packet, I said he graduated and

nobody is at the school until late July or early August.  She said to keep calling them and see

if I can locate someone, that they want it filled out by the Special Ed Dept.  Also, yesterday I

got 2 letters stating to mail in the forms within 10 days or risk being denied.  I called and she

said "Oh, that just means to contact us, and you just did so don't worry about it."  That doesn't

make any sense. 

 

I also opened my big mouth!  I know your not suppose to volunteer anything, but I accidentally

did.  We are in the process of trying to get Cody transferred over to the adult MDA clinic.  I

guess he is between doctors.  It has been almost 7 mos. since his last appt. with his Dr.,

but MDA keeps giving me the run around and tells me they will look into what is taking so long,

but they never call me back!  Anyhow, the lady as SS asked about his Dr., and I said we are

getting a new Dr., and she said, "Oh, that may be a problem."  Let's hope not! 

 

I just wanted to know if this is the way it usually goes.  They are so frustrating.

 

DeeDee Fuller

 

---

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-------------- Original message --------------
From: "Seth & DeeDee Fuller" <sethfuller@...>

It's probably just a Texas thing!  I think the school packet is ridiculous!  This will slow things

down even more!  When I told the lady at SS that nobody will be at the school until at least the

beginning of Aug., she didn't believe me.  She said, "Oh, keep trying, someone should be there!" 

I told her it is a small country school, and they shut down for the summer.  I know this from

previous years that I would try to contact the school to find out things in the summer.

 

Why are these things harder in Texas???  Maybe they aren't, it's probably just our luck with

things! LOL!

 

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

From: Adele

To: MD-List@yahoogroups.com

Sent: Wednesday, June 28, 2006 6:47 PM

Subject: RE: [MD-List] Applying for SSI

DeeDee.  I never heard of any of this.  When Jason turned 18, I call Social; Security, told then Jason was applying for SSI and they made us a phone conference appointment.  I gave then all of the requested information.  The fact that your son has been seen by other doctors should not be a problem.  That you are in the process of changing from pediatrician to adult doctors should not matter or hold things up. I never had to fill out anything from the school.  Most of the questions were about work and why you can’t work anymore or get a job.

Adele

---

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Seth & DeeDee Fuller
Sent: Wednesday, June 28, 2006 4:24 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] Applying for SSI

We are in Texas and have been trying to get SSI started for my DMD son who turned 18 in April.

Just wanted to say how it has been going, and to ask if a couple of things sound right.

We got 2 packets in the mail 2 wks. ago.  One said to be complete by his school teacher (He

graduated already) and the other said something like " Function report for child age 6 to 12th

birthday".  I called and she said she sent the wrong one, and she sent another packet that

this time says "child age 12 to 18th birthday".  I called again and explained he is 18 and 2 mos.

She said that is okay, fill it out anyways.  Even though the questions are geared as if a parent

if filling it out, asking questions of the child.  As for the school packet, I said he graduated and

nobody is at the school until late July or early August.  She said to keep calling them and see

if I can locate someone, that they want it filled out by the Special Ed Dept.  Also, yesterday I

got 2 letters stating to mail in the forms within 10 days or risk being denied.  I called and she

said "Oh, that just means to contact us, and you just did so don't worry about it."  That doesn't

make any sense. 

I also opened my big mouth!  I know your not suppose to volunteer anything, but I accidentally

did.  We are in the process of trying to get Cody transferred over to the adult MDA clinic.  I

guess he is between doctors.  It has been almost 7 mos. since his last appt. with his Dr.,

but MDA keeps giving me the run around and tells me they will look into what is taking so long,

but they never call me back!  Anyhow, the lady as SS asked about his Dr., and I said we are

getting a new Dr., and she said, "Oh, that may be a problem."  Let's hope not! 

I just wanted to know if this is the way it usually goes.  They are so frustrating.

DeeDee Fuller

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

From: knuckles 145

To: MD-List@yahoogroups.com

Sent: Thursday, June 29, 2006 6:08 AM

Subject: Re: [MD-List] Applying for SSI

I'm in California and I really dont know what he will have to do or even what will end up being covered etc.  I need to check into it more, but who has time or energy

 

Beth M.

 

On 6/29/06, Seth & DeeDee Fuller <sethfuller@...> wrote:

This sounds more complicated for you Beth.  Will your son have to reapply when he turns 18 as well?

What state are you in?  I was thinking you are in Texas. 

--
It's not about time, its about priorities.  

 

---

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Checked by AVG Free Edition.
Version: 7.1.394 / Virus Database: 268.9.6/378 - Release Date: 6/28/2006

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

From: Tigger

To: MD-List@yahoogroups.com

Sent: Wednesday, June 28, 2006 6:50 PM

Subject: Re: [MD-List] Applying for SSI

Sometimes it is a lot of paper work and can go just like you are having a

hard time with it and sounds like bad timing on the new doctor... just get

the papers you need and keep checking with SSI if you need more help.

I know when my sister did this with her son with Beckers it was easy for her,

but she stays right on them and did all there paper work fast. This was just

before he turned 18.... i did not get my ssi until i was 37, i have Beckers also

and this time it was just 4 months to get it and they oked it the first try...

i had tried when i was 18 and 22 and got turned down. Good luck and hope you

can get his SSI soon.

 

Greg

 

http://members.tripod.com/~Greg38/MyPage.html
----- Original Message -----

From: Seth & DeeDee Fuller

To: MD-List@yahoogroups.com

Sent: Wednesday, June 28, 2006 1:24 PM

Subject: [MD-List] Applying for SSI

We are in Texas and have been trying to get SSI started for my DMD son who turned 18 in April.

 

Just wanted to say how it has been going, and to ask if a couple of things sound right.

We got 2 packets in the mail 2 wks. ago.  One said to be complete by his school teacher (He

graduated already) and the other said something like " Function report for child age 6 to 12th

birthday".  I called and she said she sent the wrong one, and she sent another packet that

this time says "child age 12 to 18th birthday".  I called again and explained he is 18 and 2 mos.

She said that is okay, fill it out anyways.  Even though the questions are geared as if a parent

if filling it out, asking questions of the child.  As for the school packet, I said he graduated and

nobody is at the school until late July or early August.  She said to keep calling them and see

if I can locate someone, that they want it filled out by the Special Ed Dept.  Also, yesterday I

got 2 letters stating to mail in the forms within 10 days or risk being denied.  I called and she

said "Oh, that just means to contact us, and you just did so don't worry about it."  That doesn't

make any sense. 

 

I also opened my big mouth!  I know your not suppose to volunteer anything, but I accidentally

did.  We are in the process of trying to get Cody transferred over to the adult MDA clinic.  I

guess he is between doctors.  It has been almost 7 mos. since his last appt. with his Dr.,

but MDA keeps giving me the run around and tells me they will look into what is taking so long,

but they never call me back!  Anyhow, the lady as SS asked about his Dr., and I said we are

getting a new Dr., and she said, "Oh, that may be a problem."  Let's hope not! 

 

I just wanted to know if this is the way it usually goes.  They are so frustrating.

 

DeeDee Fuller

 

---

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Checked by AVG Free Edition.
Version: 7.1.394 / Virus Database: 268.9.6/378 - Release Date: 6/28/2006

---

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Checked by AVG Free Edition.
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----- Original Message -----

From: knuckles 145

To: MD-List@yahoogroups.com

Sent: Wednesday, June 28, 2006 6:01 PM

Subject: Re: [MD-List] Applying for SSI

I need to follow with with Social Security.  My DMD son and I have been getting some version of SS because of his dad's death.  But that stops for me when he turns 16 next month, so we have been filling the paperwork proving he is disabled. 

 

Good luck with your paperwork

 

Beth M.

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

From: Adele

To: MD-List@yahoogroups.com

Sent: Wednesday, June 28, 2006 6:47 PM

Subject: RE: [MD-List] Applying for SSI

DeeDee.  I never heard of any of this.  When Jason turned 18, I call Social; Security, told then Jason was applying for SSI and they made us a phone conference appointment.  I gave then all of the requested information.  The fact that your son has been seen by other doctors should not be a problem.  That you are in the process of changing from pediatrician to adult doctors should not matter or hold things up. I never had to fill out anything from the school.  Most of the questions were about work and why you can’t work anymore or get a job.

 

Adele

 

---

From: MD-List@yahoogroups.com [mailto:MD-List@yahoogroups.com] On Behalf Of Seth & DeeDee Fuller
Sent: Wednesday, June 28, 2006 4:24 PM
To: MD-List@yahoogroups.com
Subject: [MD-List] Applying for SSI

 

We are in Texas and have been trying to get SSI started for my DMD son who turned 18 in April.

 

Just wanted to say how it has been going, and to ask if a couple of things sound right.

We got 2 packets in the mail 2 wks. ago.  One said to be complete by his school teacher (He

graduated already) and the other said something like " Function report for child age 6 to 12th

birthday".  I called and she said she sent the wrong one, and she sent another packet that

this time says "child age 12 to 18th birthday".  I called again and explained he is 18 and 2 mos.

She said that is okay, fill it out anyways.  Even though the questions are geared as if a parent

if filling it out, asking questions of the child.  As for the school packet, I said he graduated and

nobody is at the school until late July or early August.  She said to keep calling them and see

if I can locate someone, that they want it filled out by the Special Ed Dept.  Also, yesterday I

got 2 letters stating to mail in the forms within 10 days or risk being denied.  I called and she

said "Oh, that just means to contact us, and you just did so don't worry about it."  That doesn't

make any sense. 

 

I also opened my big mouth!  I know your not suppose to volunteer anything, but I accidentally

did.  We are in the process of trying to get Cody transferred over to the adult MDA clinic.  I

guess he is between doctors.  It has been almost 7 mos. since his last appt. with his Dr.,

but MDA keeps giving me the run around and tells me they will look into what is taking so long,

but they never call me back!  Anyhow, the lady as SS asked about his Dr., and I said we are

getting a new Dr., and she said, "Oh, that may be a problem."  Let's hope not! 

 

I just wanted to know if this is the way it usually goes.  They are so frustrating.

 

DeeDee Fuller

 

From: Seth & DeeDee Fuller

To: MD-List@yahoogroups.com

Sent: Wednesday, June 28, 2006 1:24 PM

Subject: [MD-List] Applying for SSI

We are in Texas and have been trying to get SSI started for my DMD son who turned 18 in April.

 

Just wanted to say how it has been going, and to ask if a couple of things sound right.

We got 2 packets in the mail 2 wks. ago.  One said to be complete by his school teacher (He

graduated already) and the other said something like " Function report for child age 6 to 12th

birthday".  I called and she said she sent the wrong one, and she sent another packet that

this time says "child age 12 to 18th birthday".  I called again and explained he is 18 and 2 mos.

She said that is okay, fill it out anyways.  Even though the questions are geared as if a parent

if filling it out, asking questions of the child.  As for the school packet, I said he graduated and

nobody is at the school until late July or early August.  She said to keep calling them and see

if I can locate someone, that they want it filled out by the Special Ed Dept.  Also, yesterday I

got 2 letters stating to mail in the forms within 10 days or risk being denied.  I called and she

said "Oh, that just means to contact us, and you just did so don't worry about it."  That doesn't

make any sense. 

 

I also opened my big mouth!  I know your not suppose to volunteer anything, but I accidentally

did.  We are in the process of trying to get Cody transferred over to the adult MDA clinic.  I

guess he is between doctors.  It has been almost 7 mos. since his last appt. with his Dr.,

but MDA keeps giving me the run around and tells me they will look into what is taking so long,

but they never call me back!  Anyhow, the lady as SS asked about his Dr., and I said we are

getting a new Dr., and she said, "Oh, that may be a problem."  Let's hope not! 

 

I just wanted to know if this is the way it usually goes.  They are so frustrating.

 

DeeDee Fuller

 

---

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

From: JoyceGlass@...

To: MD-List@yahoogroups.com

Sent: Monday, June 19, 2006 7:03 PM

Subject: Re: [MD-List] Re: seating problem

I didn't realize that but now it makes sense.  Probably some of the vendors only deal with certain companies or they have other reasons for pushing one type of cushion over another.  It might be better to take the person to a seating specialist at a hospital that deals with these types of patients.  I have heard that the Children's Hospital in Washington,  DC is excellent.  

 

Thanks George!

Im  using all the info I have received and talked to our vendor and they
have ordered a couple of different seats for us to try.  Oh yeah I also
believe that weight has a big thing to do with the cushions because
Christopher is not a heavy set kid I think the lighter weight kids just sit
different.
I'll  let everyone know how our seating adventure goes.

Diana
----- Original Message -----
From: "George" <gbsona40@...>
To: <MD-List@yahoogroups.com>
Sent: Saturday, June 17, 2006 1:52 AM
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
>>
>
>
>
>
>
>
>
>
> Yahoo! Groups Links
>
>
>
>
>
>

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

From: BracinKnee@...

To: feeding_g-tubes@yahoogroups.com ; FUNDOproblems@yahoogroups.com ; gtube@... ; MD-List@yahoogroups.com ; nivusers@yahoogroups.com ; our-kids@... ; tubefeeding@yahoogroups.com

Sent: Tuesday, June 27, 2006 1:04 AM

Subject: [MD-List] MJ Update - Graduation and Party

 

 

Hi Everyone,

    I have had a busy weekend and few days prior to the weekend. I'm going to divide my update into days so it is less confusing.

 

Thursday, June 22nd:

    Today was a day of prayers, praying for no rain!!!  Watching the news showed rain coming in but it all disappeared so the weather was good.  Before we left for the school, I had surprise visitors.  I knew my friend, Peg, was coming down, but didn't know that Peg was bringing others down with her.  Connor, Karen, and Owen Reilly showed up for graduation and my party. I was shocked speechless, not a common occurrence.  My Florida relatives showed up too before we headed to the school. Besides my family, the Reilly's, and Peg, Shaun, Lynne, and MeMe were there too along with friends from the area. There was a slight breeze but it was sure hot and humid.  I think when graduation started it was still 88 degrees.  I compromised for graduation, as I wanted to walk down the hill with the kids and I sat outside waiting for everyone.  It was a pretty good ceremony, lasted about 2 hours to get through everyone's diplomas. 

Here are pictures from Graduation - if you don't have AOL, click the View As Guest button -

http://pictures.aol.com/ap/viewShare.do?shareInfo=1uXYxRKKm4RYIKvbcQDDkAQxz%2fQZudXtCCx5yFiTnl9WGd%2bBXiXp6w%3d%3d 

 

Friday, June 23:

    What an exciting day!  I got up and we quickly packed and headed to the hotel to check in.  We met up with the Reilly's and Peg.  I hung out with them while Brenda unloaded the van.  We stayed in a suite that had a large living/dining room separating the two bedrooms.  Grandma and Aunt Claudia stayed in one room and Brenda and I were in the other room.  It was a beautiful room.  Our room had a large canopy bed surrounded on three sides by white sheer curtains.  We hung out, called out for dinner at Frank's and just had fun.  Constance, from Ohio, showed up after dinner and we hung out laughing and telling stories.  Finally, we headed to bed around 11:30.

 

Saturday, June 24th:

    Today was PARTY DAY!!!  I was up at 9am ready to go.  Everyone was going to go back to our house for breakfast but we were all lazing around so we called for room service for breakfast! After breakfast, I went to check out the party room, which was partially decorated.  I sent Brenda back to the room to get my quilt to display(from Nell Baldwin with the help of many SMA Families), along with my awards and my special memory book, in the room.  People started showing up and the party started.  Everyone had name tags because Aunt MeMe wanted them.  My dad had put little names on the tags.  For example, my Uncle Jon's tag said, Jon Purk, "Weird Uncle".  My cousin JR's said, Jeremy Caldwell, "Cousin Germy" (yes, that is what I call him and he is sooo mad at me about it!!).  There were so many people that I didn't have time to eat any food (except half a meatball).  There were a few other SMA Families at the party.  Besides Peg and the Reilly's, Shaun, Lynne, and Aunt MeMe came down, along with the Tromontano's, and Ethan's grandma's were there.  It was good to see everyone again!! After the party was slowing down, my cousin Kendra and cousin Heather collected all the remaining balloons and attached them to my chair.  We then took tons of pictures of me, with cousins, aunts, uncles, etc.  I was seeing spots.  LOL!!  After pictures were done, we separated the balloons and all the smaller ones, we gave to everyone who wanted to go outside with us and do a balloon release.  We released over 100 balloons.  It rained the whole day except when we went outside.  As soon as all the balloons were out of sight, it started raining again.  It was really cool.  After that, we headed down to the room where I opened all my gifts and cards.  My cousin Levi, helped me open them all, and he was so funny.  With every gift, he would say, "Oh my goodness, it is beautiful...what is it!?"  LOL!!!  I got so many cool gifts.  For dinner, we had delivery again.  We just hung out and laughed at stories.  We headed to bed at 11 as everyone was tired and worn out!

Here are pictures from Friday and Saturday - again if you don't have AOL, click the View As Guest button -

http://pictures.aol.com/ap/viewShare.do?shareInfo=1uXYxRKKm4RYIKvbcQDDkCo95GLwjn6Gp%2fv%2bLVG3LNhWGd%2bBXiXp6w%3d%3d

 

Sunday, June 25th:

    We had to get up and going.  Checkout was at noon, but we had to be out by 11 as Janis, Brenda's mom was flying in at noon.  My cousin, Nate, showed up to help load the van and check out.  We were out and had everything loaded at 11:15am.  We picked up Janis at the airport and were home at 12:30.  We hung out all afternoon and evening with the rest of my family that hadn't left yet.  Mostly it was a relaxing day with lots of family time!  I laid down early (9pm) to rest a bit. 

 

Monday, June 26th:

    Today, I slept in until 10am.  I stayed in bed to relax since tomorrow is traveling day.  Brenda packed while I uploaded pictures.  (I hope the pictures work since Kodak wasn't letting me upload pictures today.)  At noon, we watched the news and saw that Seaford, DE is under water.  We called the hotel and they are closed!!!  We quickly looked around and planned an alternative route and found a different hotel room!!  Instead of the scenic route, we are going through Baltimore and DC.  We are staying in Dumfries, VA.  I am so excited to head back to Virginia Beach again!  We leave in the morning and will be back on July 4th.  I will not have much access while gone, if any, so stay tuned for more details. 

 

Thanks for everyone who was there for my party and who sent me beautiful cards and gifts.  I truly appreciate all the love that was included in it.  I love all of you and even though, you weren't there with me, I did feel the love of everyone! 

 

Quote for Today:

God grant me the serenity to accept the people I cannot change, the courage to change the one I can, and the wisdom to know it's me.  ~Author Unknown

 

 

MJ

http://www.caringbridge.com/ny/mjpurk - My Journal

http://www.our-sma-angels.com/Margaret/ - My Original Website

http://www.mjthesmaqueen.com/ - My New Website

http://www.our-sma-angels.com/b4sma/ - My Organization's Site

http://www.caringbridge.org/ny/b4sma/ - My Organization's Update Site

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

From: gassenjim

To: MD-List@yahoogroups.com

Sent: Friday, June 23, 2006 4:55 PM

Subject: [MD-List] Goodbye DMD Options

Dear friends,
It's time to say goodbye to DMD options. Thank you very much for your
years of visiting options. It was a great pleasure to provide
forthright information and to shair stories.
Here is a quick update. My marriage to Julie May forever remains
special. We just celebrated our two year anniversary.
This may be the end of DmdOptions I still have a lot to say. I look
forward to sharing my perspective in a new forum. Check out my web
site/blog
www.tagworld.com/jimsmind <http://www.tagworld.com/jimsmind>
I'm still putting a few finishing touches on.
This is not goodbye for me rather it is see you at tagworld, MD-list
and DMD Pioneers.
Peace
Jim Gassen
JGassen@wowway.com

Darn, DMD Options was cool...but congrats on your anniversary, and many
more to come!

Vikki Stefans, M.D., pediatric physiatrist (rehab doc for kids) at UAMS
and Arkansas Children's Hospital.  Working Mom of Sarah T. and Michael C.,
and wife of Henry Stefans. Every mom is a working mom!- OK, dads too.

On Fri, 23 Jun 2006, gassenjim wrote:

> Dear friends,
> It's time to say goodbye to DMD options. Thank you very much for your
> years of visiting options. It was a great pleasure to provide
> forthright information and to shair stories.
> Here is a quick update. My marriage to Julie May forever remains
> special. We just celebrated our two year anniversary.
> This may be the end of DmdOptions I still have a lot to say. I look
> forward to sharing my perspective in a new forum. Check out my web
> site/blog
> www.tagworld.com/jimsmind <http://www.tagworld.com/jimsmind>
> I'm still putting a few finishing touches on.
> This is not goodbye for me rather it is see you at tagworld, MD-list
> and DMD Pioneers.
> Peace
> Jim Gassen
> JGassen@...
>
>
>
>
>
>
>

Dear friends,
It's time to say goodbye to DMD options. Thank you very much for your
years of visiting options. It was a great pleasure to provide
forthright information and to shair stories.
Here is a quick update. My marriage to Julie May forever remains
special. We just celebrated our two year anniversary.
This may be the end of DmdOptions I still have a lot to say. I look
forward to sharing my perspective in a new forum. Check out my web
site/blog
www.tagworld.com/jimsmind <http://www.tagworld.com/jimsmind>
I'm still putting a few finishing touches on.
This is not goodbye for me rather it is see you at tagworld, MD-list
and DMD Pioneers.
Peace
Jim Gassen
JGassen@...

Dept. of Rehab may help with wheelchair selection and seating.  If the
insurance pays for the chair. They work with everything else to make
it easier for people.
Arlene

--- In MD-List@yahoogroups.com, JoyceGlass@... wrote:
>
> I didn't realize that but now it makes sense.  Probably some of the
vendors
> only deal with certain companies or they have other reasons for
pushing  one
> type of cushion over another.  It might be better to take the person
to  a
> seating specialist at a hospital that deals with these types of
patients.  I have
> heard that the Children's Hospital in Washington,   DC is excellent.
>

Congrats MJ!