hello

February 17, 2004

Hi Kelley:

Sweetie, both of your messages came through loud and clear. Sorry I can't help you with your question but I wanted to let you know that you are getting through to us ok! Take care now and be PAIN FREE! Love Ya!

We Will Win

Love Y'all

Bob & Carole

Dad & Mom

Panama City, FL

Please Visit the Stills Disease Web Site At www.stillsdisease.org

-- Re: Fwd: Hello

For some reason this is not going through.. lol.. I guess I am having issues tonight lol

I have a question, I hope someone can help me with.. lol... I was wondering if anyone has taken their MTX a day before they are supposed to and if anything happened? I am leaving Friday morning to go to Denver to watch my nephew at the State Wrestling Tournament and wont be back until Sunday. Friday is usually my MTX day, but I wont have anyone to give me my shot so I was going to do it Thursday night. Besides I have a lot of pain in my left leg with the shot and that is the leg this time. So I would rather not have it done before I drive the two hours by myself. Any suggestions or advise would be greatly appreciated.

I hope everyone is doing well.. Sorry I haven't been around much. Still waiting to hear about the Humira and still in a lot of pain. I am going to go to Denver though, as it is my nephews Senior year and the last time to see him wrestle.... Just have to remember to pack the pain meds lol..

Welcome to all the new people.. You have found a great new home and family.

Love you all Kelley in Colorado Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

February 17, 2004

Hi Kelley:

Sweetie, both of your messages came through loud and clear. Sorry I can't help you with your question but I wanted to let you know that you are getting through to us ok! Take care now and be PAIN FREE! Love Ya!

We Will Win

Love Y'all

Bob & Carole

Dad & Mom

Panama City, FL

Please Visit the Stills Disease Web Site At www.stillsdisease.org

-- Re: Fwd: Hello

For some reason this is not going through.. lol.. I guess I am having issues tonight lol

I have a question, I hope someone can help me with.. lol... I was wondering if anyone has taken their MTX a day before they are supposed to and if anything happened? I am leaving Friday morning to go to Denver to watch my nephew at the State Wrestling Tournament and wont be back until Sunday. Friday is usually my MTX day, but I wont have anyone to give me my shot so I was going to do it Thursday night. Besides I have a lot of pain in my left leg with the shot and that is the leg this time. So I would rather not have it done before I drive the two hours by myself. Any suggestions or advise would be greatly appreciated.

I hope everyone is doing well.. Sorry I haven't been around much. Still waiting to hear about the Humira and still in a lot of pain. I am going to go to Denver though, as it is my nephews Senior year and the last time to see him wrestle.... Just have to remember to pack the pain meds lol..

Welcome to all the new people.. You have found a great new home and family.

Love you all Kelley in Colorado Visit the Still's Disease Message Boardhttp://disc.server.com/Indices/148599.htmlThe materials and information contained in this message are not intended to replace the services of a trained health professional or to be a substitute for medical advice of physicians and/or other health care professionals. The International Still's Disease Foundation is not engaged in rendering medical or professional medical services. You should consult your physician on specific medical questions, particularly in matters requiring diagnosis or medical attention. The International Still's Disease Foundation makes no representations or warranties with respect to any treatment, action, application, medication or preparation by any person following the information offered or provided within this support form. ion by any person following the information offered or provided within this support form.

____________________________________________________ IncrediMail - Email has finally evolved - Click Here

February 19, 2004

Hi Kelley,

I just read your post, and my doc says as long as there is 5 days

between your MTX then its ok. I always vary between a Wed and a Fri

depends on what is going on with my life. I hope this helps.

Take care,

love Pat from MA

April 27, 2004

Hi ,

is 8, will be 9 in Aug.

Re: Hello

--- Sounds like things are going to get bettter you guys. how old

is ?

In <mailto: >, " THOMAS RUSSO "

<rn4premies@m<mailto:rn4premies@m>...> wrote:

> Hi all,

> I just wanted to get out a quick note to say Hi and hope all the

Pumpkins are well.

> Dale and Ursula it was good to see you both in Raleigh.

> We had our long awaited visit/consult with 's ped on

Mon, loaded with info from the last 2 meetings. Well we really

didn't need it. Finally, is going to be started on IGIV, the

Dr feels with all the breakthrough infections she deserves the

chance. As soon as everything is approved by the insurance co

and set up she will start. We talked about premed, side effects

etc. she is going to draw her levels just before they start the IGIV

so only feels the one stick as she panics with needles

right now. They are also going to lightly sedate her the first time

so she won't panic. We are so happy, finally they are looking at

her quality of life. Hopefully it will work and she will start feeling

better, less infections, less fatigue and start gaining weight etc.

Only time will tell. I just wanted to tell you all,it feels like good

news for a change.

> Thanks for listening.

> mom to - IgA def, asthma, gerd

>

May 15, 2004

----- virus???outlook express removed attachment and thats all there was here

Original Message -----

From: BobbyJ

Sent: Wednesday, May 12, 2004 1:04 PM

Subject: Re: Hello

Please visit the Zapper homepage athttp://www.ZapLife.org

May 15, 2004

hi djc

thanks for sharing that...i know for sure i didnt send that one because i

dont send attachements to the . its been a long time since i

attached a joke or whatever.

bob in missippi

At 08:06 PM 5/14/2004, DJC wrote:

----- virus???outlook express removed attachment and thats all there

was here

Original Message -----

From: BobbyJ

Sent: Wednesday, May 12, 2004 1:04 PM

Subject: Re: Hello

Please visit the Zapper homepage at

http://www.ZapLife.org

Please visit the Zapper homepage at

http://www.ZapLife.org

May 22, 2004

Please see the attached file for details.

June 4, 2004

This may not be the suggestion you're looking for, but I thought I'd throw

it out there anyway. Please just ignore it if it's not the route you want

to take.

There is another clinical trial going on at Primary Children's Hospital in

Salt Lake City Utah. Right now they're in the safety portion of the study

so every child in the study gets the actual drugs and not a placebo.

The main reason I brought it up is because I know that for the families in

the study the do flights through angel flights but they also arrange for a

room and meals each time you are there. The only expense to the family is

the Taxi from the airport to the hospital.

The other benefit is that Dr. Swoboda is excellent when it comes to helping

type 1 children live longer, healthier lives. She's very experienced with

respiratory care, nutrition, etc.

If you're interested in more info. just let me know.

Oh, I should mention I have 4 kids, my youngest two have SMA. Taleah is

type 1 and will be four years old next month and Colin is 8 months and

stronger, although we don't know what type yet.

Have you checked out www.smasupport.com yet? It's a great site with a very

supportive group of people.

At 09:43 PM 6/4/2004 +0000, you wrote:

>My grand-daughter was diagnosed with SMA type1 on May 11,2004.

>She was born Sept.29,2003.Her name is Hallam.

>We are going to Stanford University In California to help Dr.Wang get

>FDA approval for his new way to help fight SMA. will be

>apart of the clinical study.We leave 6/10/2004 from IL to fly there.

>We were told by A specalist that is just going to die and

>there was nothing we could do.They know so little about the disease

>here in central IL.

>After the whole family grieving for a few days I started doing some

>searching on the internet about ways to be in a clinical study to

>help defeat this genetic disease.I found the phone number of DR. Wang

>and he called the same night.So we are taking there to

>Standford University.We are fighters and will do anything to save our

>little angel.I just looked into her big ol brown eyes and knew she

>had a greater purpose in this life than to just die as the Doctor

>said.

>If they can not help (she maybe getting the placebo)she can

>help others and hopefully save lives of other infants with this

>disease.

>If anyone knows of a way to help us with funding for expenses while

>we are there please let us know.The flight is paid for Angel-wings

>but it is very expensive to stay there.We have to go back and forth

>for 7months(from IL).The first time we are there we go for 8

>days.Then a few days a month for the future visits.The

>Mc house is full there.

>We plan on doing a benefit but we had time before we go.We are hoping

>to have one around her first birthday.

> Thankyou.

> Jeanna Huette

>

>A FEW RULES

>

>* The list members come from many backgrounds, ages and beliefs So all

>members most be tolerant and respectful to all members.

>

>* Some adult language and topics (like sexual health, swearing..) may

>occur occasionally in emails. Over use of inappropriate language will

>not be allowed. If your under 16 ask your parents/gaurdian before you

>join the list.

>

>* No SPAMMING or sending numerous emails unrelated to the topics of

>spinal muscular atrophy, health, and the daily issues of the disabled.

>

>Post message:

>Subscribe: -subscribe

>Unsubscribe: -unsubscribe

>

>List manager: (Sexy Mature Artist) Email: Esma1999@...

>

>oogroups.com

>

>List manager: (Sexy Mature Artist) Email: Esma1999@...

>

June 5, 2004

hi welcome to the group. i also wasnt supposed to live past my teens and i

am now 25 going on 26 in aug. i live a full active life, so there is hope. i

have SMA 2. theres a group called smasupport moderated by Stants.

there are many type 1 families on that list. laura also runs a nonprofit

organization so maybe she could help w/funding but i'm not sure. go to

www.smasupport.com to find out how to join that chat. there are many moms on

that list who

are using NIV to help their babies live and a new diet that seems to help. i

hope they can help you.

kimi

June 5, 2004

My private email is: red542000@...

> >My grand-daughter was diagnosed with SMA type1 on May 11,2004.

> >She was born Sept.29,2003.Her name is Hallam.

> >We are going to Stanford University In California to help Dr.Wang

get

> >FDA approval for his new way to help fight SMA. will be

> >apart of the clinical study.We leave 6/10/2004 from IL to fly

there.

> >We were told by A specalist that is just going to die and

> >there was nothing we could do.They know so little about the disease

> >here in central IL.

> >After the whole family grieving for a few days I started doing some

> >searching on the internet about ways to be in a clinical study to

> >help defeat this genetic disease.I found the phone number of DR.

Wang

> >and he called the same night.So we are taking there to

> >Standford University.We are fighters and will do anything to save

our

> >little angel.I just looked into her big ol brown eyes and knew she

> >had a greater purpose in this life than to just die as the Doctor

> >said.

> >If they can not help (she maybe getting the placebo)she

can

> >help others and hopefully save lives of other infants with this

> >disease.

> >If anyone knows of a way to help us with funding for expenses while

> >we are there please let us know.The flight is paid for Angel-wings

> >but it is very expensive to stay there.We have to go back and forth

> >for 7months(from IL).The first time we are there we go for 8

> >days.Then a few days a month for the future visits.The

> >Mc house is full there.

> >We plan on doing a benefit but we had time before we go.We are

hoping

> >to have one around her first birthday.

> > Thankyou.

> > Jeanna Huette

> >

> >A FEW RULES

> >

> >* The list members come from many backgrounds, ages and beliefs So

all

> >members most be tolerant and respectful to all members.

> >

> >* Some adult language and topics (like sexual health, swearing..)

may

> >occur occasionally in emails. Over use of inappropriate language

will

> >not be allowed. If your under 16 ask your parents/gaurdian before

you

> >join the list.

> >

> >* No SPAMMING or sending numerous emails unrelated to the topics of

> >spinal muscular atrophy, health, and the daily issues of the

disabled.

> >

> >Post message:

> >Subscribe: -subscribe

> >Unsubscribe: -unsubscribe

> >

> >List manager: (Sexy Mature Artist) Email: Esma1999@a...

> >

> >oogroups.com

> >

> >List manager: (Sexy Mature Artist) Email: Esma1999@a...

> >

June 25, 2004

OH

> MY GOODNESS THE PERFECT SPEECH, Im still in shock LOL

>

> CB's Granny

That is awesome!!!!!! How exciting!!!

Penny in OH

's Mom

June 27, 2004

Wow, CB did have a great verbal day!!! Don't you just love it when

those things happen!!!

I have neat story to share also. Every morning before I leave for

work, I always give Chad a kiss. Friday morning, he said " Mommy,

will you give me a kiss. " It was completely unprompted! No pronoun

reversals etc. Boy, did I lay one on him!

Everynow and then that little boy that's locked behind the walls of

autism comes out.

It's moments like those

that give me hope!

June 27, 2004

LOL ...What a Great Day you had ! And there WILL be Many more. All we have to do is keep putting one foot in front of the other. I raised two "typical " kids, and let me tell ya the job didnt change all that much with autism. Just be open to different ways to learning and the patience to KNOW that with time and LOTS OF LOVE they will meet the goals we set for them. Our Kids are little people that came with no Dr. Spock books.I rejoice in all of our kids....They are INCREDIBLE !

Arent we the lucky ones !!!!!

CB's Granny

June 28, 2004

, that is so wonderful. I also would smoother Evan in kisses to hear

those words--any words.

BETTY

June 28, 2004

Yes, , that was a precious moment. May you have many more. Pat K

June 29, 2004

Well, don't give up hope. Karac now has his baths down to two! LOL, Pat K

June 29, 2004

We are going to attempt the zoo today...wish me luck ! LOL CB has had very high verbal week, but there has also been a great deal of pinching. One of his therapists told me awhile ago that whenever there is progress there is also some regression. Its hard to say what caused all that agression last week, could have been the major schedule change, but it is calming down . He seems to stim for comfort and FUN. When he gets going he's laughing like crazy . He actually seeks out old toys that he can stim off of. (Bought a toy called Brain Warp and he dug though the old toy box for it) Hope this week finds all of you doing much better !

CB's Granny

June 29, 2004

Have fun at the zoo; give us the report when you get back. LOL, Pat K

July 16, 2004

I just looking for someone to talk to. I have not figured out the time thing yet. My computer showes the last message at 11 somthing this morning. Does that mean today or yesterday? Anyway it is 4:13 AM July 117 here. Is there anybody out there??

Athena

August 2, 2004

In a message dated 8/2/04 9:32:06 AM Central Standard Time,

maggiewang@... writes:

> http://bodyforlife-tracker.com/searchprofile.cfm?id=5687

Maggie, I checked out your tracker. You are doing awesome! The morning

workouts really made a difference for you this time around, hu? Good job!!

MN

August 2, 2004

> Hi everyone, I am just starting week 4 of the program. I know the

> scale is not the only way to measure results but of course I can't

> stay off mine. Unfortunaely It's going in the wrong direction.

Is

> this normal? Has anyone else gained weight in the first four

weeks?

> I should also mention that I do feel like I've gained a lot of

> muscle. Any advice would be appreciated

Yes and yes

http://photos./group//vwp?.dir=

/Anjil_43 & .src=gr & .dnm=novtoapril.jpg & .view=t & .done=http%

3a//photos./group//lst%3f%

26.dir=/Anjil_43%26.src=gr%26.view=t

LOL, not sure if that link will work .umm just look at my pic,

hehehe just look at my pic in the photo section.

Hang in there

Anjil

August 2, 2004

> Hi everyone, I am just starting week 4 of the program. I know the

> scale is not the only way to measure results but of course I can't

> stay off mine. Unfortunaely It's going in the wrong direction.

Is

> this normal? Has anyone else gained weight in the first four

weeks?

> I should also mention that I do feel like I've gained a lot of

> muscle. Any advice would be appreciated

Yes and yes

http://photos./group//vwp?.dir=

/Anjil_43 & .src=gr & .dnm=novtoapril.jpg & .view=t & .done=http%

3a//photos./group//lst%3f%

26.dir=/Anjil_43%26.src=gr%26.view=t

LOL, not sure if that link will work .umm just look at my pic,

hehehe just look at my pic in the photo section.

Hang in there

Anjil

August 2, 2004

I gained 2 lbs in the first 2 weeks (142 to 144), then dropped down to

139 in week 4 and got STUCK there for another 15 days. I weigh in

daily, too--primarily because the diet and exercise tracking software

I use likes to have a daily weight entered to calculate BMR, calories

burned in exercise and other fun stuff. (I don't stress about the

scale, though--at my leanest and strongest in the US Army, I still

averaged 140 lbs at 5'6 " .) Also, my measurements in the " key "

locations--chest, waist, hip, and thigh--barely changed in 4 weeks,

but looking at my Day 0 and 4 weeks pictures, you can tell I was

getting more toned. The circumferences didn't change much, but the

fat and muscle inside had shifted so I looked leaner.

I've got pics and measurements up for my current challenge at

http://bodyforlife-tracker.com/searchprofile.cfm?id=5687 if you want

to see what I'm talking about.

Maggie

August 2, 2004