hello

September 17, 2003

, so happy to hear from you...it's been forever. What have been doing

these days? I hope that the humeria continues to work for you. I am on my third

round of MTX today and I am sicker then a dog, bad stomach and gut...but it

has helped the joint and muscle pain and has brought down the fevers and the

sweats are gone. So with this improvement, its worth the gut ache a few days a

week.

Keep us posted as to how you are doing. Take care..

Lorie in Seattle

September 17, 2003

Thanks for the update ; you give us all hope.

Be good to yourself,

Barb in SLC

September 28, 2003

Hi Shaylene. My name is Marcy. my son's name is .

He has SMA type 2. He is 6 years old and in the first

grade. Welcome to the group!

Marcy

journey1414@... wrote:

>Hi I am new to the group! My name is Shaylene Factor my

>daughter Sierra

>Journey Factor is 2 1/2 almost 3(jan 3) she has Spianl

>muscular atrophy type 2! I

>hope to make lots of new friends in this group! Bye

>Shaylene

>

September 28, 2003

Hi Marcy nice to meet you! Glad to hear is doing well! That gives me

great hope for Sierra! Have you had any problems with germs, with

being in school?

Your Friend Shaylene mom to Sierra Journey SMA 2

September 28, 2003

Shaylene,

has done real well. I had him in preschool

2 years ago and he was hospitalized with the flu that

winter. Last year was a good year with no visits to the

hospital. Just be sure and get Sierra a flu shot each

year. did get a shot that year he had the flu, but

the doctor said that had he not gotten the shot, it would

have been alot worse. When he does get a cold, we start

using the inexsufflator to prevent and help clear out

chest congestion. School has been in for about 5 weeks now

and he has been healthy. (let me knock on wood) Feel free

to email with any questions. where are yall located? I am

in Alabama.

Marcy

journey1414@... wrote:

>Hi Marcy nice to meet you! Glad to hear is doing

>well! That gives me

>great hope for Sierra! Have you had any problems with

>germs, with

>being in school?

>Your Friend Shaylene mom to Sierra Journey SMA 2

>

September 28, 2003

Marcy, We live in Florida! Does have any other equipment he

is on? Shaylene

We are wating for the palse-ox to come in, dr supposed to be writing a Rx for

a caugh machine I doon know if our insurance will pay for it though! We are

having a hard time getting her a powerchair, she had a loner then they took it

back, then she had another loner then they took it back, she has been without

a chair now for a few months and it is getting harder and harder for me to

carrier her around! Does have a powerchair? Did you have a problem with

insurance? Shaylene

September 28, 2003

Thanks Kendra! See what is going on is that Sierra was turned down at 2 when

she had already been using the loner since 17months old..she was turned down

because they said she was to young....medicaid....but another young boy in our

town that is younger that Sierra was approved a new chair that fit all his

need and it was covered by regular insurance with no problem he had the chair in

like 3 months, we have been fighting this for like over a year! We had video's

made and Sierra's Papa was a member of our school board for many years and

knows lots of people so we are going after medicaid and sending vidoe's to Jeb

Bush, Bill Possey State Senator (personal friend) and all other Main people!

They cannot turn down a child with special needs and then turn around with the

same case and approve it regardless of the different insurances they cannot say

it is safe for one person and not for another.....am I wrong? Shaylene

September 28, 2003

I just got a brand new $25,000 wheelchair a month ago. There really wasn't

anything wrong w/ my old chair, after 5 yrs Medicaid will buy a new one, no

matter the reason. My chair is custom all the way. Molded seats, Whitmyer

headrest w/ foam padding, attendant joystick and tilt that parents/nurses can

control from the back. Mini joystick w/ fiberobtics to switch modes. Insurance

and Medicaid payed for it and it wasn't a hassle at all.

Sincerely,

s, the Unique Princess.

September 28, 2003

I'd just like to mention that often times insurance (especially

Medicaid) is unwilling to provide medical equipment easily. Just let

this be a deterrent. This equipment is necessary. I've been denied

power wheelchairs every time we've tried to get a new one or repairs

for one. I've been waiting 3 months now for new batteries (which are

6 years old and I was told should be changed every 2 years [okay I

don't keep up with my chair as I should =/] and tires [which are also

6 years old and extremely worn]). The best thing you can do is to

annoy them with letters. Explain the situation you're in, explain the

necessity and the immediate attention this requires, and explain the

medical needs of your child (and yourself - as lifting a young child

constantly is straining to your body). Also, have as many doctors or

therapists that you know to write a letter as well urging the

promptness and attention and deliverance of medical equipment. This

is the only way they'll see you out of a bunch of others and respond

as quickly as possible, and as you need and desire - especially if

you have doctors and therapists writing to them and telling them it's

necessary and important.

Good luck.

~Kendra

> Marcy, We live in Florida! Does have any other

equipment he

> is on? Shaylene

> We are wating for the palse-ox to come in, dr supposed to be

writing a Rx for

> a caugh machine I doon know if our insurance will pay for it

though! We are

> having a hard time getting her a powerchair, she had a loner then

they took it

> back, then she had another loner then they took it back, she has

been without

> a chair now for a few months and it is getting harder and harder

for me to

> carrier her around! Does have a powerchair? Did you have a

problem with

> insurance? Shaylene

September 28, 2003

Well, in my experience, insurance will say anything (smart and stupid

apply here) to try and not spend money. It's ridiculous, kind of like

the state educational and vocational services, the people there are

there to help you but its in their best interest to not provide you

with anything to help their financial status. It really is ridiculous!

I think it's great that you're using all the resources you can to

write letters and send videos to people in authoritative positions. I

do strongly recommend getting Sierra's doctors and/or therapists.

Their opinions count the most with insurance companies since

they're " smarter " or " more knowledgeable " about her condition (of

which I sometimes laugh at since they have just as much understanding

of her day to day activities and needs as my cat would).

It took my mother 5 years to get my first wheelchair approved. She

began struggling for it when I was 3. I had still been walking, so it

was a bit different situation. However, I was worsening more and more

every month and walking less far and tiring out. By the time I was 8,

I finally got my first power chair. I didn't get another one until I

was 16. I had seriously outgrown the wheelchair to the point I was

getting sores on my hips and thighs from rubbing against the sides of

the arm rests. I had no back and head support which really caused

more pains and fatigue throughout the day. The computer had totally

messed up and the forward button would make the wheelchair turn

left!! Sometimes the wheelchair would be " off " and it would start

moving by itself. (I used to joke to kids that would tease me to be

careful because my wheelchair was possessed and might come after

them!) Eventually, the batteries utterly died and at this point,

Medicaid STILL refused to pay for a new wheelchair. I'm not sure

about the exact process my parents and doctors went through because

at that time I was in the hospital for my spinal fusion and wasn't

helping in writing the letters, but a few months after my surgery I

had a new wheelchair!! Overall, it took a year and a half to convince

them that my wheelchair was useless, it was a medically dangerous

situation, and that they must pay for it.

It will take some time, but don't give up. Never give up or give in

to ANY place. I don't care how much energy it takes or how much power

they have - it is not acceptable to yourself or your child to just

settle or forget and find another means. There's so much advocacy

you'll need to do everyday and teach to Sierra as she grows up.

I hope things come through for you soon.

~Kendra

> Thanks Kendra! See what is going on is that Sierra was turned down

at 2 when

> she had already been using the loner since 17months old..she was

turned down

> because they said she was to young....medicaid....but another young

boy in our

> town that is younger that Sierra was approved a new chair that fit

all his

> need and it was covered by regular insurance with no problem he had

the chair in

> like 3 months, we have been fighting this for like over a year! We

had video's

> made and Sierra's Papa was a member of our school board for many

years and

> knows lots of people so we are going after medicaid and sending

vidoe's to Jeb

> Bush, Bill Possey State Senator (personal friend) and all other

Main people!

> They cannot turn down a child with special needs and then turn

around with the

> same case and approve it regardless of the different insurances

they cannot say

> it is safe for one person and not for another.....am I wrong?

Shaylene

September 28, 2003

the Muscular dystrophy association paid for s

wheelchair batteries and a new switch on the controller

part. Medicaid denied the batteries. That was one time MDA

was helpful.

Marcy

" kendrascalia " <kendra@...> wrote:

>I'd just like to mention that often times insurance

>(especially

>Medicaid) is unwilling to provide medical equipment

>easily. Just let

>this be a deterrent. This equipment is necessary. I've

>been denied

>power wheelchairs every time we've tried to get a new one

>or repairs

>for one. I've been waiting 3 months now for new batteries

>(which are

>6 years old and I was told should be changed every 2

>years [okay I

>don't keep up with my chair as I should =/] and tires

>[which are also

>6 years old and extremely worn]). The best thing you can

>do is to

>annoy them with letters. Explain the situation you're in,

>explain the

>necessity and the immediate attention this requires, and

>explain the

>medical needs of your child (and yourself - as lifting a

>young child

>constantly is straining to your body). Also, have as many

>doctors or

>therapists that you know to write a letter as well urging

>the

>promptness and attention and deliverance of medical

>equipment. This

>is the only way they'll see you out of a bunch of others

>and respond

>as quickly as possible, and as you need and desire -

>especially if

>you have doctors and therapists writing to them and

>telling them it's

>necessary and important.

>

>Good luck.

>

> ~Kendra

>

>> Marcy, We live in Florida! Does have

>>any other

>equipment he

>> is on? Shaylene

>> We are wating for the palse-ox to come in, dr supposed

>>to be

>writing a Rx for

>> a caugh machine I doon know if our insurance will pay

>>for it

>though! We are

>> having a hard time getting her a powerchair, she had a

>>loner then

>they took it

>> back, then she had another loner then they took it back,

>>she has

>been without

>> a chair now for a few months and it is getting harder

>>and harder

>for me to

>> carrier her around! Does have a powerchair? Did

>>you have a

>problem with

>> insurance? Shaylene

>

September 28, 2003

Shaylene, does have a powerchair and Medicaid

covered the cost of that. Medicaid is paying on his

inexsufflator, as a rental. We got it through the Hug

Center. I would like to get a pulse oxi. for . I

need to talk to his doctor about that. has a

nebulizer for his albuteral. We only do this when he is

sick. Feel free to email me off the board if you'd like.

Marcy

journey1414@... wrote:

> Marcy, We live in Florida! Does have

>any other equipment he

>is on? Shaylene

>We are wating for the palse-ox to come in, dr supposed to

>be writing a Rx for

>a caugh machine I doon know if our insurance will pay for

>it though! We are

>having a hard time getting her a powerchair, she had a

>loner then they took it

>back, then she had another loner then they took it back,

>she has been without

>a chair now for a few months and it is getting harder and

>harder for me to

>carrier her around! Does have a powerchair? Did

>you have a problem with

>insurance? Shaylene

>

September 29, 2003

Thank you again Kendra I promise I ll not give up or in to anyone untill

Sierra gets exactly what she needs! Shaylene

September 29, 2003

I am so glad that you didn't have problems getting your chair, us howevery

have not found it to be so easy! I will never give up not untill we get what we

want! Shaylene

October 10, 2003

Join the club! I've got ear infections! How did that happen?

I definitely wouldn't recommend doing a 5K with congestion unless you're

going to walk it. I ran outside the other day and it made me feel worse...

Hope you feel better...

hello

> I feel yucky! I think there is a virus going around. I was in bed

> all day Tue with a sinus migraine thing. My head hurt so bad that I

> was nausous. on a scale of 1-5, 5 being dead I was a 6. Wed morning I

> was about 4. yesterday about a 2 & today a 3. My nephew was sick

> about a week ago weeks ago, DH over the weekend. My mom woke up this

> morning with a headache & backache. DH & nephew are feeling great now

> but I'm still lingering. I have that 5k in the morning so don't know

> if I'll go. Thinking I might need to see a dr.

>

> Also I got my pics developed. I'll try to post them today. I didn't

> see much change.

>

> dani

>

October 11, 2003

Autism Treatment

This is a great group and I feel that they will be just what you are

looking for. But you are always welcome at

Texas_Parents_of_Bi_Polar_Children/ as we

deal with this regularly. Please contact me anytime you have questions.

Amy

" I don't suffer from stress.....I'm a carrier! "

North Central Texas Federation of Families for

Children's Mental Health (NCTFFCMH)

Website: <http://pages.ivillage.com/nctffcmh/index.html>

http://pages.ivillage.com/nctffcmh/index.html

NCTFFCMH Email: nctffcmh.tx@...

Amy A. Sosa

Executive Director

amy.sosa@...

Phone: 972.462.9265

Fax: 972.462.1002

Cell: 214.334.4020

HELLO

DO YOU KNOW HOW I CAN FIND An AUTISM/ASPERGERS SITE IN CORPUS CHRISTI,

TX. I LIVE 45 MINS AWAY FROM THERE. I ENJOY THIS ONE FROM NORTH TEXAS,

AND I WILL PROBABLY KEEP READING IT. BUT I WOULD LIKE TO BE KEPT UP ON

THINGS THAT I MAY CAN TRAVEL TO HELP MY SON WITH ASPERGERS WHICH IS 13

YRS. OLD.

SINCERELY, PJ

October 11, 2003

Autism Treatment

This is a great group and I feel that they will be just what you are

looking for. But you are always welcome at

Texas_Parents_of_Bi_Polar_Children/ as we

deal with this regularly. Please contact me anytime you have questions.

Amy

" I don't suffer from stress.....I'm a carrier! "

North Central Texas Federation of Families for

Children's Mental Health (NCTFFCMH)

Website: <http://pages.ivillage.com/nctffcmh/index.html>

http://pages.ivillage.com/nctffcmh/index.html

NCTFFCMH Email: nctffcmh.tx@...

Amy A. Sosa

Executive Director

amy.sosa@...

Phone: 972.462.9265

Fax: 972.462.1002

Cell: 214.334.4020

HELLO

DO YOU KNOW HOW I CAN FIND An AUTISM/ASPERGERS SITE IN CORPUS CHRISTI,

TX. I LIVE 45 MINS AWAY FROM THERE. I ENJOY THIS ONE FROM NORTH TEXAS,

AND I WILL PROBABLY KEEP READING IT. BUT I WOULD LIKE TO BE KEPT UP ON

THINGS THAT I MAY CAN TRAVEL TO HELP MY SON WITH ASPERGERS WHICH IS 13

YRS. OLD.

SINCERELY, PJ

October 15, 2003

Good to see you are back with us also Louise!

Pattymelt's sister of 41 years passed away. She may be staying with

family members for a week or so. She will check in with the group when she

can.

Little " germ bags, " is right...that's why when one kid in school gets a cold

they all take it home.

Take care my friend, and continue to feel better.

Hugs from WIsconsin,

tircia

" I Hope You Dance "

& & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & & &

-- Hello

Hello Stilligans,

I have not been on my computer for a very long time. After my stay with

my grandkids in Vegas, just one day after getting home, I got

bronchitis, BOY OH BOY DID I! I remember how Barb and my doc called

little kids " Germ bags, " It is true. I am glad I didn't have it to

share with everyone in Vegas, lol. It has been really rough, had my

oxygen concentrator on as high as it would go and nearly ended up in the

hospital where I could get more liters of air. Finally I am getting

where I can breath better. My concern is some lost or missing messages,

perhaps one about a death in Melt's family????? Could someone please

enlighten me? Thanks. I am lying low for a while but I will be back on

my feet soon. You all take care, love you all, Louise.

October 16, 2003

Louise,

I never dreamt that when I said good by to you in Vegas, the grandkids

would effect you so badly!! Why does love end up in so much pain for some

of us?

Glad you are on the road to recovery and back on line.

Take good care of yourself

Ann K

On LI NY

Hello

> Hello Stilligans,

> I have not been on my computer for a very long time. After my stay with

> my grandkids in Vegas, just one day after getting home, I got

> bronchitis, BOY OH BOY DID I! I remember how Barb and my doc called

> little kids " Germ bags, " It is true. I am glad I didn't have it to

> share with everyone in Vegas, lol. It has been really rough, had my

> oxygen concentrator on as high as it would go and nearly ended up in the

> hospital where I could get more liters of air. Finally I am getting

> where I can breath better. My concern is some lost or missing messages,

> perhaps one about a death in Melt's family????? Could someone please

> enlighten me? Thanks. I am lying low for a while but I will be back on

> my feet soon. You all take care, love you all, Louise.

>

October 16, 2003