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I am so glad you got an attorney to help you. But it makes me very upset when I

hear how these school districts are not in compliance with IDEA. Every child

has a right to an education in the least restrictive environment. I am a parent

of a child with a physical and developmental disability and the things I have

had to fight for! As a family we have enough to deal with (whether the child

has a physical, mental, or health involvment) and then to have to fight the

schools too! I could go on a soap box about this (I have before) but I will cut

it short. I'm glad you won and I will keep praying for you and .

P

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  • 7 months later...

Tammy,

That is such wonderful news!!! I am almost finished with Petition targeting

the AAP's Task Force on Infant Positioning and SIDS, and the American Board

of Pediatrics. I see no reason why it shouldn't be launched by then. If you

would like any help, please feel free to ask!! This is very exciting!!

Sierra 07/99

11/97

Redford, MI

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- Get me a copy if you can. I would love to pass on a copy to this guy! Could easily incorporate that info. Pass any thing my way. That would be a great help.

Tammy & 12/8/99

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That is wonderful!!!

> Well, I finally heard from my local newspaper guy today. It has

been over a

> month since I sent him a letter and I spoke to him last July.

Crazy.

> Anyway, he said he would really like to do a story on tort/plag and

we set up

> a time to get together next Tuesday. Now if he shows up. Claims

he gets

> people calling and writing him all the time on topics and is really

swamped.

> I guess I am grateful he is still interested. At least is

in his STAR

> Band. He was surprised and said he would bring a camera crew out

to take

> pictures. Anyway, going to suggest one with the dog and none of

me. I take

> such terrible pictures. Boy, I hope it goes good. I sent him lots

in

> writing and other articles. I guess I'll have to brush up

on " stuff. "

>

> Tammy & 12/8/99

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Tammy...

Why did you decide to go to the news? What gave you the idea? What have

they said and what are they going to write about? Getting the word out?

Peds need to be more informed?....of course our lists could go on and

on...right?!! Let me know, sounds like something I could do here in Miami

area.

and 6/26/00, banded 12/22 and doing great.

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Iammy,

I will have it made available ASAP.

> - Get me a copy if you can. I would love to pass on a

copy to this

> guy! Could easily incorporate that info. Pass any thing my way.

That would

> be a great help.

>

> Tammy & 12/8/99

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Tammy:

Congratulations for getting this guy's attention! I am sure it will go great!

Sue Luck

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

From: bailykuhn@...

plagiocephalyegroups ; torticolliskidsegroups ; CAPSORG-owneregroups

Sent: Monday, January 08, 2001 4:27 PM

Subject: Good News

Well, I finally heard from my local newspaper guy today. It has been over a month since I sent him a letter and I spoke to him last July. Crazy. Anyway, he said he would really like to do a story on tort/plag and we set up a time to get together next Tuesday. Now if he shows up. Claims he gets people calling and writing him all the time on topics and is really swamped. I guess I am grateful he is still interested. At least is in his STAR Band. He was surprised and said he would bring a camera crew out to take pictures. Anyway, going to suggest one with the dog and none of me. I take such terrible pictures. Boy, I hope it goes good. I sent him lots in writing and other articles. I guess I'll have to brush up on "stuff." Tammy & 12/8/99

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  • 3 weeks later...

,

Thank you for sharing. Your story was just what I needed to hear

right now as I am waiting to do the dance with the new insurance

company before Riley can be casted for her second band.

I'm so happy things worked out for you. I can only hope for the same.

Keep your fingers crossed.

Sue

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Yeah ,

I wish I could get a copy of the news. I was thinking of contacting

our station because the ancor has a small baby and thought it might

prick her interest. How did you go about it?

great news on the 2nd band

and Sam,

--- In Plagiocephaly@y..., " Cummings-Hall, " <tcumming@o...>

wrote:

> Hi all!

>

> I wanted to share our good news! We found out yesterday that Aetna

has

> approved our 2nd DOC band (good thing since we've had it for 5

weeks now!)

> I was beginning to worry that they would not cover it since Hunter

was 13

> months old when he was casted. I guess they covered it because it

was his

> 2nd band and he still met the measurements requirement. (Becky, I

know this

> will interest you if you do decide to get a 2nd band!)

>

> Also, we now only have about 6 weeks left in the band. I don't

know if it

> was a growth spurt or if the 2nd band just fits better but it seems

to be

> working like magic! We brought home the 1st " head on a stick " and

it's just

> amazing what a difference there is! I think I've shown it to every

one I

> know! As I look at the 1st mold of his head I know without a doubt

that all

> the trips back and forth to Houston, all the money spent, all the

stickers

> bought, all the cleaning every bit of it was worth it and I'm so

thankful

> that we had the support and resources to pursue the treatment. We

have been

> in the DOC Band for 20 weeks now (with 6 more to go - that's 6

months) and

> we wore a locally made band for 3 months so it has been a long road

but now

> that I can see the light at the end I know it was all worth it!

>

> I know that some of you are struggling right now but don't give up

hope!

>

> (Hunter's mom)

> Baton Rouge, LA

>

> PS. We did the interview last Friday (with our local news station)

and it

> should air one day this week. It really went well I think, I

wasn't nervous

> like I thought I would be! Thanks for all the support!

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Yeah!!! You are soooo lucky.

and SAm

> I spoke to the Orthotist that will be doing Max a little while

ago. He was

> wonderful. He told me about all the research he has done on Plagio

and that

> he has tried several times to get CT to open a clinic in NY. He

said that he

> can't wait to start working with Max. He answered all my questions

without

> hesitating and also said that he would be very interested in

helping our

> group in any way...he said that he will give me a link to a web

site tomorrow

> and he can answer questions for us when we need it....I AM SO

HAPPY!!!!!!!!

> YEAH!!!! FINALLY!!!! Someone actually knew what I was talking

about and

> cared!!!

> Just wanted to share the good news.....

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-

Glad to hear the good news! Keep it coming.

Stacey and Hannah

-- In Plagiocephaly@y..., syddesi2@a... wrote:

> I spoke to the Orthotist that will be doing Max a little while

ago. He was

> wonderful. He told me about all the research he has done on Plagio

and that

> he has tried several times to get CT to open a clinic in NY. He

said that he

> can't wait to start working with Max. He answered all my questions

without

> hesitating and also said that he would be very interested in

helping our

> group in any way...he said that he will give me a link to a web

site tomorrow

> and he can answer questions for us when we need it....I AM SO

HAPPY!!!!!!!!

> YEAH!!!! FINALLY!!!! Someone actually knew what I was talking

about and

> cared!!!

> Just wanted to share the good news.....

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  • 1 month later...
Guest guest

nice to hear ;)

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

From: " " <lisarich.com@...>

< >

Sent: Sunday, March 18, 2001 3:58 AM

Subject: [] Good News

> Greetings Everyone,

>

> I had to share my good news. The doctor removed my stitches on Friday and

> now I am sporting a walking cast (looks like the same type cast with a

> canvas shoe to wear). The Longview Mall will never be the same.....I

> shopped until I dropped. Needless to say, my foot is throbbing but it was

> so wonderful to be able to go out shopping alone!!! Of course I just had

to

> make a couple of purchases!

>

> Everyone have a great weekend.

>

>

>

>

>

>

>

>

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Guest guest

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

From: Dennis Overskov <webmaster@...>

< >

Date: Sunday, March 18, 2001 2:16 AM

Subject: Re: [] Good News

nice to hear ;)

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

From: " " <lisarich.com@...>

< >

Sent: Sunday, March 18, 2001 3:58 AM

Subject: [] Good News

> Greetings Everyone,

>

> I had to share my good news. The doctor removed my stitches on Friday and

> now I am sporting a walking cast (looks like the same type cast with a

> canvas shoe to wear). The Longview Mall will never be the same.....I

> shopped until I dropped.

>

>

>>>>>>>Way To Go Girl!!! LOL, but be careful, can't do it all at first, go

slow, then pick up speed! LOL, ~>Becky M.

>

>

>

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  • 3 years later...
Guest guest

Hey everyone, I went to my GP yesterday and I got GREAT news! I lost 3.5 pounds! I haven't done anything different and it is winter but I'm not questioning it!!! My parents didn't really appreciate this but I figured all of you would. Also, my SED rate was a 3!!!!!!!! This is the 1st time since the onset of my arthritis that the SED rate has been a single digit. WOOHOO! For all of you newbies ... I'm 27 and was diagnosed with inflammatory seronegative arthritis when I was 22 and in my last semester of college. My current meds are: Remicade, Azulfidine EN, Prednisone, Folic Acid, Methotrexate, Fosomax and Ibuprofen.

Take care,

Steph in VA

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~, Thanks for your informative message. I know how hard it is to 'accept' your diagnosis - I still cant believe it - 2.5 years on! I still get really upset when I flare and am almost surprised that it is still there - denial!! Goodluck with your trial, I will be very interested in the results, we need all the research we can get into this debilitating illness - for all our sakes! Take care,suzie

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Guest guest

Congratulations, Steph!

I don’t know about everyone, but my

weight goes up and down about 10 lbs

When my joints swell.

I’m glad to hear you’re doing

well.

Love and peace

yellow

Improve it. Agitate. Promote freedom and

justice. Educate and empower.

Use your resources to reach those who have

not been where you have been,

nor seen what you have seen. In doing this

we build a stronger nation.

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

From: DeNicola

[mailto:sdenicola@...]

Sent: Thursday, March 10, 2005

8:44 AM

To:

Rheumatoid Arthritis

Subject:

Good news

Hey everyone,

I went to my GP yesterday and I got GREAT news! I lost

3.5 pounds! I haven't done anything different and it is winter but I'm not

questioning it!!! My parents didn't really appreciate this but I figured all of

you would. Also, my SED rate was a 3!!!!!!!! This is the 1st time since the

onset of my arthritis that the SED rate has been a single digit. WOOHOO!

For all of you newbies ... I'm 27 and was diagnosed with

inflammatory seronegative arthritis when I was 22 and in my last semester of

college. My current meds are: Remicade, Azulfidine EN, Prednisone, Folic Acid,

Methotrexate, Fosomax and Ibuprofen.

Take care,

Steph in VA

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

,

Thanks for your informative message. I know how hard it is to 'accept' your diagnosis - I still cant believe it - 2.5 years on! I still get really upset when I flare and am almost surprised that it is still there - denial!! Goodluck with your trial, I will be very interested in the results, we need all the research we can get into this debilitating illness - for all our sakes!

Take care,

suzie

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