Update

[Guest guest]

,

Do we know the same crowd? I have a friend who was and still is in denial,

and her son's headshape is very off, although I recently posted that it has

improved some. I get the same responses, not my child, its not that bad,

that's for really deformed heads, etc (from friends/ co-workers, have never

approached a stranger). And you think, ok, your child is a candidate, and?

I was like you, saddened, but I wanted to do whatever I could to help my

child- so we are made to feel either just too vain, or its ok for our kids to

have this problem but not theirs. I don't know what to say except its sad

what denial does to some people. This friend's son also may have language

apraxia and/or autism, they aren't sure yet, but they aren't trying to find

out which either- I have sent numerous links for both, but no mention, and

its kept quiet despite the need for serious intervention. Yet, with

, we could talk for an hour about his tort and plagio (like her child

never had it!- now that's frustrating!). But, what can ya do?! Like you

said, the more you talk about it, those that can't deal with it will just get

pissed off- and that's not going to help either. Sad for the kids tho

' Mom

[Guest guest]

...

It's so true. People make it sound like...it's ok for to go through this but not their child. I guess people don't try to find out all they can..b/c they feel if they don't learn about it..and don't know anything about it..then it's ok not to do anything about it. And if they ignore it..it'll go away. Well when their child is older and if it doesn't correct itself...then the parents will say..man i wish i did something. Oh well..at least we know we did all we can!!

In a message dated 9/18/2002 12:02:17 PM Eastern Daylight Time, rella1234@... writes:

,

Do we know the same crowd? I have a friend who was and still is in denial,

and her son's headshape is very off, although I recently posted that it has

improved some. I get the same responses, not my child, its not that bad,

that's for really deformed heads, etc (from friends/ co-workers, have never

approached a stranger). And you think, ok, your child is a candidate, and?

I was like you, saddened, but I wanted to do whatever I could to help my

child- so we are made to feel either just too vain, or its ok for our kids to

have this problem but not theirs. I don't know what to say except its sad

what denial does to some people. This friend's son also may have language

apraxia and/or autism, they aren't sure yet, but they aren't trying to find

out which either- I have sent numerous links for both, but no mention, and

its kept quiet despite the need for serious intervention. Yet, with

, we could talk for an hour about his tort and plagio (like her child

never had it!- now that's frustrating!). But, what can ya do?! Like you

said, the more you talk about it, those that can't deal with it will just get

pissed off- and that's not going to help either. Sad for the kids tho

' Mom

[Guest guest]

(((((((((Carol))))))))))....many prayers for your healing. When I read

that you might have to leave the Remicade study I gasped " Oh no! " out

loud! But...I know the Lord will bring you through this Remicade or

not.

Take good care of yourself. You are much loved. Please keep us posted.

Hugs Always.....

Tess

[Guest guest]

Carol,

I¹m sorry your chest is still giving you so much pain. I hope the

prednisone helps. It¹s good that you have time to decide what you want to

do as far as Remicade. If the chest pain is unrelated, it would be a shame

to stop. But you can¹t live like this and if it¹s the Remicade doing it, it

has to go.

Hugs,

a

> Hi All,

>

> I just got back from having a chest xray at the hospital. My MD told me he

> really wishes I would drop out of the Remicade study altogether, and that he

> feels that the problems I'm having are a result of the Remicade. Luckily I

> don't have to make that decision for another couple of months, since I have

> that long before my next infusion is due. I want to talk that over with my

> rheumy before I make a decision on it.

>

> The chest pain is really bad today, and I'm now on prednisone 15 mg.

> Hopefully a short course of prednisone will clear it right up. He still

> wants to make sure it's nothing more serious. Oh well. He'll know the

> results midday tomorrow.

>

> I hope everyone is having a good day!

>

> Much love,

>

> Carol

>

>

>

>

>

[Guest guest]

-

Yeah ! Way to grow! I know what you mean about not thinking

you will ever see both ears from the front - or back!

I joined a playgroup while Dane was banded. I told them they would

recognize us (we first met at the zoo) by Dane's band. I just

explained everything off the bat so I didn't have to answer any

questions. We never had any problems. Nobody asked any questions

until he graduated. Then they wanted to know where his

cute " helmet " was.

Dane's mom DOC Grad

> Hi All. I wanted to share 's progres with all of you. It's

been 3

> weeks in the band and we are seeing amazing results. I couldn't

be

> happier!! is also receiving physical therapy once a week to

> strengthen her left side and get her up to speed with all her

gross and fine

> motor skills. I have been doing stretches daily to work on her

tort and

> that also has been really successful. I've attached a very recent

pic of

> during bathtime. In it you can see something I never

thought I'd be

> able to see while looking at her from the front - both of her

ears!!!!

>

> I also had one quick question. I'm thinking of joining a moms

group that I

> found online and I've been emailing the coordinator of the group.

She is

> trying to organize a get together for moms that are interested in

joining

> the group. I'm debating whether or not I should let her know

about 's

> band. I don't want anyone to feel uncomfortable but at the same

time I'm

> not sure how to mention it before the get together. I'm so used

to it that

> it's not really a big deal to me, but I'm sure it would turn heads

on that

> first meeting. Anyone here have a similar situation or

suggestions???

>

> Thank you AGAIN for all of your continued and well appreciated

support!!

>

> & (6 months, banded 8/26/02)

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

[Guest guest]

I am so excited for you about 's progress, that is wonderful!!

just got his band on Sat so I can only hope for such results

at this point. As for the mom's group: this may sound a little

insensitive but I don't mean to be - what's the big deal? I would

just go with the helmet on and not worry about. Are people going to

wonder? Sure. Are some going to ask questions? Undoubtedly - its

human nature. But you know you're doing the best for your daughter

and it IS your chance to educate others. Plus, once they've seen it

and know what its all about, it'll be fine. I would be more stressed

out without the helmet on - is her head growing right now when I

don't have it on? Are people noticing the misshapen head and not

saying anything to me - just thinking there's something wrong with my

kid? etc. Like I said above, I don't mean to be insensitive so

please don't take offense. I happen to like it when people ask me

about it. If I had seen a kid with a helmet months before and had

asked (I probably wouldn't have but if I did) then maybe I would have

gotten in one sooner. Good luck to you no matter what you

decide!

Kristi

(4) and (1yr on Mon - banded 9/14)

OH

> Hi All. I wanted to share 's progres with all of you. It's

been 3

> weeks in the band and we are seeing amazing results. I couldn't be

> happier!! is also receiving physical therapy once a week to

> strengthen her left side and get her up to speed with all her gross

and fine

> motor skills. I have been doing stretches daily to work on her

tort and

> that also has been really successful. I've attached a very recent

pic of

> during bathtime. In it you can see something I never thought

I'd be

> able to see while looking at her from the front - both of her

ears!!!!

>

> I also had one quick question. I'm thinking of joining a moms

group that I

> found online and I've been emailing the coordinator of the group.

She is

> trying to organize a get together for moms that are interested in

joining

> the group. I'm debating whether or not I should let her know about

's

> band. I don't want anyone to feel uncomfortable but at the same

time I'm

> not sure how to mention it before the get together. I'm so used to

it that

> it's not really a big deal to me, but I'm sure it would turn heads

on that

> first meeting. Anyone here have a similar situation or

suggestions???

>

> Thank you AGAIN for all of your continued and well appreciated

support!!

>

> & (6 months, banded 8/26/02)

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

[Guest guest]

Kudos to you on 's progress. I understand your concern. I'm

having some of the same debates with myself. is getting his band

on Monday. We are supposed to go to a baby shower in a couple of

weeks. Most of the people there have never seen ... Do I go with

or without it? I'm leaning more towards having him wear it...we'll

just take it off for a few minutes so everyone can see him without it

and then put it right back on. It will be an opportunity to educate

other mommies and soon to be mommies about plagio and tort.

('s mom)

Atlanta, GA

> > Hi All. I wanted to share 's progres with all of you. It's

> been 3

> > weeks in the band and we are seeing amazing results. I couldn't

be

> > happier!! is also receiving physical therapy once a week to

> > strengthen her left side and get her up to speed with all her

gross

> and fine

> > motor skills. I have been doing stretches daily to work on her

> tort and

> > that also has been really successful. I've attached a very recent

> pic of

> > during bathtime. In it you can see something I never

thought

> I'd be

> > able to see while looking at her from the front - both of her

> ears!!!!

> >

> > I also had one quick question. I'm thinking of joining a moms

> group that I

> > found online and I've been emailing the coordinator of the group.

> She is

> > trying to organize a get together for moms that are interested in

> joining

> > the group. I'm debating whether or not I should let her know

about

> 's

> > band. I don't want anyone to feel uncomfortable but at the same

> time I'm

> > not sure how to mention it before the get together. I'm so used

to

> it that

> > it's not really a big deal to me, but I'm sure it would turn heads

> on that

> > first meeting. Anyone here have a similar situation or

> suggestions???

> >

> > Thank you AGAIN for all of your continued and well appreciated

> support!!

> >

> > & (6 months, banded 8/26/02)

> >

> > _________________________________________________________________

> > MSN Photos is the easiest way to share and print your photos:

> > http://photos.msn.com/support/worldwide.aspx

[Guest guest]

That is wonderful news, !!!! I am so glad you are seeing results and things are progressing for !!! She is such a doll and she looks great in the pic. I think by all means you should let them know about 's band. Maybe it will educate someone who doesn't know about it and get another child treated. Education is the only way people will know about plagio and tort. I say go for it!!!

Taryn

's mom

Update

Hi All. I wanted to share 's progres with all of you. It's been 3 weeks in the band and we are seeing amazing results. I couldn't be happier!! is also receiving physical therapy once a week to strengthen her left side and get her up to speed with all her gross and fine motor skills. I have been doing stretches daily to work on her tort and that also has been really successful. I've attached a very recent pic of during bathtime. In it you can see something I never thought I'd be able to see while looking at her from the front - both of her ears!!!!I also had one quick question. I'm thinking of joining a moms group that I found online and I've been emailing the coordinator of the group. She is trying to organize a get together for moms that are interested in joining the group. I'm debating whether or not I should let her know about 's band. I don't want anyone to feel uncomfortable but at the same time I'm not sure how to mention it before the get together. I'm so used to it that it's not really a big deal to me, but I'm sure it would turn heads on that first meeting. Anyone here have a similar situation or suggestions???Thank you AGAIN for all of your continued and well appreciated support!! & (6 months, banded 8/26/02)_________________________________________________________________MSN Photos is the easiest way to share and print your photos: http://photos.msn.com/support/worldwide.aspxFor more plagio info

[Guest guest]

:

is so cute! She really looks terrific. I'm so happy you've

seen great results & her pt is going well for her tort.

I would probably mention to the other mom what 's band is for &

let them know she's in the band. It would probably save an awkward

moment or two.

Tell to keep up the great growth & rounding!

Debbie Abby's mom DOCGrad

MI

> Update

>

>

> Hi All. I wanted to share 's progres with all of you. It's

been 3

> weeks in the band and we are seeing amazing results. I couldn't

be

> happier!! is also receiving physical therapy once a week

to

> strengthen her left side and get her up to speed with all her

gross and fine

> motor skills. I have been doing stretches daily to work on her

tort and

> that also has been really successful. I've attached a very

recent pic of

> during bathtime. In it you can see something I never

thought I'd be

> able to see while looking at her from the front - both of her

ears!!!!

>

> I also had one quick question. I'm thinking of joining a moms

group that I

> found online and I've been emailing the coordinator of the

group. She is

> trying to organize a get together for moms that are interested in

joining

> the group. I'm debating whether or not I should let her know

about 's

> band. I don't want anyone to feel uncomfortable but at the same

time I'm

> not sure how to mention it before the get together. I'm so used

to it that

> it's not really a big deal to me, but I'm sure it would turn

heads on that

> first meeting. Anyone here have a similar situation or

suggestions???

>

> Thank you AGAIN for all of your continued and well appreciated

support!!

>

> & (6 months, banded 8/26/02)

>

> _________________________________________________________________

> MSN Photos is the easiest way to share and print your photos:

> http://photos.msn.com/support/worldwide.aspx

>

>

[Guest guest]

Debbie,

Could you imagine me showing up and not saying a word about the

band??? How funny would that be??? hahaha Just avoid bringing it up

at all and then avoiding all questions regarding it. Of course I

would never do that, but the lil devil in me can laugh at the idea.

hehehe

& (6 months, banded 8/26/02)

> :

> is so cute! She really looks terrific. I'm so happy you've

> seen great results & her pt is going well for her tort.

> I would probably mention to the other mom what 's band is for

&

> let them know she's in the band. It would probably save an awkward

> moment or two.

> Tell to keep up the great growth & rounding!

> Debbie Abby's mom DOCGrad

> MI

>

> > Update

> >

> >

> > Hi All. I wanted to share 's progres with all of you.

It's

> been 3

> > weeks in the band and we are seeing amazing results. I

couldn't

> be

> > happier!! is also receiving physical therapy once a week

> to

> > strengthen her left side and get her up to speed with all her

> gross and fine

> > motor skills. I have been doing stretches daily to work on her

> tort and

> > that also has been really successful. I've attached a very

> recent pic of

> > during bathtime. In it you can see something I never

> thought I'd be

> > able to see while looking at her from the front - both of her

> ears!!!!

> >

> > I also had one quick question. I'm thinking of joining a moms

> group that I

> > found online and I've been emailing the coordinator of the

> group. She is

> > trying to organize a get together for moms that are interested

in

> joining

> > the group. I'm debating whether or not I should let her know

> about 's

> > band. I don't want anyone to feel uncomfortable but at the

same

> time I'm

> > not sure how to mention it before the get together. I'm so

used

> to it that

> > it's not really a big deal to me, but I'm sure it would turn

> heads on that

> > first meeting. Anyone here have a similar situation or

> suggestions???

> >

> > Thank you AGAIN for all of your continued and well appreciated

> support!!

> >

> > & (6 months, banded 8/26/02)

> >

> >

_________________________________________________________________

> > MSN Photos is the easiest way to share and print your photos:

> > http://photos.msn.com/support/worldwide.aspx

> >

> >

[Guest guest]

Hi a,

The prednisone is already starting to work today, hooray!! I agree that it

would be a shame to stop the Remicade if the chest wall pain is unrelated,

and I’m going to wait before I make any decision regarding it. The Remicade

has helped my joints and my fatigue, and I’m not really ready to give up on

it yet. Hopefully the chest wall pain won’t come back and it won’t be an

issue.

Much love,

Carol

Re: [ ] Update

Carol,

I¹m sorry your chest is still giving you so much pain. I hope the

prednisone helps. It¹s good that you have time to decide what you want to

do as far as Remicade. If the chest pain is unrelated, it would be a shame

to stop. But you can¹t live like this and if it¹s the Remicade doing it, it

has to go.

Hugs,

a

> Hi All,

>

> I just got back from having a chest xray at the hospital. My MD told me

he

> really wishes I would drop out of the Remicade study altogether, and that

he

> feels that the problems I'm having are a result of the Remicade. Luckily

I

> don't have to make that decision for another couple of months, since I

have

> that long before my next infusion is due. I want to talk that over with

my

> rheumy before I make a decision on it.

>

> The chest pain is really bad today, and I'm now on prednisone 15 mg.

> Hopefully a short course of prednisone will clear it right up. He still

> wants to make sure it's nothing more serious. Oh well. He'll know the

> results midday tomorrow.

>

> I hope everyone is having a good day!

>

> Much love,

>

> Carol

>

>

>

>

>

[Guest guest]

In a message dated 9/18/02 11:34:43 AM Eastern Daylight Time, Av@... writes:

and out the other. I feel bad b/c they can do something..but they choose not to. And i try to educate them on it..and i do all i can..but i don't understand how they do nothing. And I can't keep pushing b/c that will only piss them off... I know

I am glad most people are understanding and want to learn more and I hope for the other mommies sake they do have babies who's heads improve without intervention. It makes me sad that putting their head in the sand is easier than addressing but hopefully it will all turn out ok. I think it is especially hard becasue we plagio parents are so passionate about it. Keep up the good work and getting the word out there- you will help many babies in the long run- trust me!

beck

[Guest guest]

Go go !

beck

[Guest guest]

That is the evil becky coming out I would go not say a word and see who had the balls to ask. Mean becky bad mommy I know but I cant help it- then I would listen to everyone talk about it and when one lady tells another yeah that is for seizures or that is for brain injury or whatever at the end of the group I would chime in and say since no one asked but I see all of you looking I though I would explain what this helmet is for!

beck

[Guest guest]

In a message dated 9/19/2002 4:40:26 PM Eastern Daylight Time, bbbhand@... writes:

Keep up the good work and getting the word out there- you will help many babies in the long run- trust me!

beck

Thanks Beck. That's what i hope!!

[Guest guest]

This is great Carol. You deserve a break. Prednisone is such a wonder

drug. It¹s to bad they can¹t find a way to eliminate the problems that come

with it. For now enjoy the pain break. I¹ll keep praying that it doesn¹t

return.

Hugs,

a

>

> Hi a,

>

> The prednisone is already starting to work today, hooray!! I agree that it

> would be a shame to stop the Remicade if the chest wall pain is unrelated,

> and I’m going to wait before I make any decision regarding it. The Remicade

> has helped my joints and my fatigue, and I’m not really ready to give up on

> it yet. Hopefully the chest wall pain won’t come back and it won’t be an

> issue.

>

> Much love,

> Carol

[Guest guest]

Thanks, a. I appreciate the prayers, and I hope the pain doesn’t come

back too. I’ve had enough pain for awhile. It’s time to go back to living!

Much love,

Carol

Re: [ ] Update

This is great Carol. You deserve a break. Prednisone is such a wonder

drug. It¹s to bad they can¹t find a way to eliminate the problems that come

with it. For now enjoy the pain break. I¹ll keep praying that it doesn¹t

return.

Hugs,

a

>

> Hi a,

>

> The prednisone is already starting to work today, hooray!! I agree that

it

> would be a shame to stop the Remicade if the chest wall pain is unrelated,

> and I'm going to wait before I make any decision regarding it. The

Remicade

> has helped my joints and my fatigue, and I'm not really ready to give up

on

> it yet. Hopefully the chest wall pain won't come back and it won't be an

> issue.

>

> Much love,

> Carol

[Guest guest]

Hey I was just looking at the pictureof in the tub she is way

way too cute!

beck

[Guest guest]

Tess,

I am very happy to hear that they refused to give you the remicade when you

have an active infection. I know you are hurting, but they did the right

thing. It has been know to increase your changes of serious infection.

http://www.remicade-ra.com/indication2/HP/index.jsp

http://www.ebiocare.com/infocenter/consumer/medlib/remicade.html

I hope it heals quickly and you can reschedule your infusion soon.

Congratulations on your loss! you are doing fabulous. I know you are

working hard, and I¹m so glad your efforts are being rewarded. I hope they

don¹t need you tomorrow. You need to rest when you¹re so tired.

a

> Hi Family....I went to do my Remicade today and Bruce, my MA, said

> welllll...your toe isn't all better, I better check with Dr. . "

> Dr. said nope...call when it is all better. I must say I'm a

> little puzzled at that and had no opportunity to question the Dr. more

> as the place was hoppin' and there were lots of patients. He allowed me

> to come back to Remicade 2 weeks after my throat surgery...but there

> wasn't an infection. Dr. and Bruce both said today they've seen

> some bad things happen when Remicade is used before an infection is

> gone. I'm glad they're cautious. My hands have swollen in the past two

> weeks, wrists and shoulders as well. And the right side of my chest is

> aching. For that I miss my Remicade.

>

> I am down 5.1 more pounds!!!! That is good news.

>

> I have to call the county jury line tonight to see if I'm needed for

> jury duty tomorrow. I've always found it very interesting, but I must

> admit I kind of hope they don't need me this time. I'm really tired.

>

> Much Love to You All....

>

> Tess

>

>

>

[Guest guest]

Hi Kathe...thanks for the sweet note. I do think the Wellbutron has

helped with the depression. I know the doctor made the right call about

Remicade...it just seems that when I've had infection related questions

before he has really down played any danger, saying it is rare. My poor

toe is a nasty sight...the surgery & 7 days of Cephalexin (3 more to go)

and it's still very angry looking. I've been following Dr's

orders...soak it twice a day, apply antibiotic ointment & new bandage.

Well, I see the podiatrist Thursday (unless I'm held longer on the

jury...I was called in.)

Much Love, Kathe...

Tess

[Guest guest]

Hi a...thanks for all the info. I do have to go to jury duty...have

to be there by 8:15am. I'm taking some healthy snacks, and will try to

put my foot up (when & if possible).

Thanks for all your encouragement, a. I have no designs or notions

on being thin...that's just not me. But I know whatever weight I can

lose in a healthy way will be a little less stress on this ol' body.

And there are so many things I would like to do that are not possible

right now. So, keep the encouragement up...I really do appreciate it.

Love You Much....

Tess

[Guest guest]

Hope your jury duty is fast and easy, Tess!

The fact that Bruce and Dr. told you " no " to your Remicade means that they

are looking out for you, you lucky

woman. There is no way you should have it if your foot isn't healed. I am happy

right along with a that they denied

you. Remicade's half-life is so long that you have to be very careful. Sorry

that you are missing the relief it

provides, but you don't want a more serious infection than you already have.

Fabulous news on your further weight loss!

[ ] Update

> Hi Family....I went to do my Remicade today and Bruce, my MA, said

> welllll...your toe isn't all better, I better check with Dr. . "

> Dr. said nope...call when it is all better. I must say I'm a

> little puzzled at that and had no opportunity to question the Dr. more

> as the place was hoppin' and there were lots of patients. He allowed me

> to come back to Remicade 2 weeks after my throat surgery...but there

> wasn't an infection. Dr. and Bruce both said today they've seen

> some bad things happen when Remicade is used before an infection is

> gone. I'm glad they're cautious. My hands have swollen in the past two

> weeks, wrists and shoulders as well. And the right side of my chest is

> aching. For that I miss my Remicade.

>

> I am down 5.1 more pounds!!!! That is good news.

>

> I have to call the county jury line tonight to see if I'm needed for

> jury duty tomorrow. I've always found it very interesting, but I must

> admit I kind of hope they don't need me this time. I'm really tired.

>

> Much Love to You All....

>

> Tess

[Guest guest]

You are so right . Bruce is a real sweetheart, and Dr. is a

good fellow too. I absolutely don't want a worse infection. Thank you

for your support & caring.

Lots of Love...

Tess

[Guest guest]

Congratulations on the weight loss Tess...way to go! Jury duty can be

interesting...weren't you looking for a volunteer activity? could be

fun...I hope you don't get too upsetting a case to decide.good luck and I

hope you enjoy your few days of diversion...marge

Re: [ ] Update

> Hi a...thanks for all the info. I do have to go to jury duty...have

> to be there by 8:15am. I'm taking some healthy snacks, and will try to

> put my foot up (when & if possible).

>

> Thanks for all your encouragement, a. I have no designs or notions

> on being thin...that's just not me. But I know whatever weight I can

> lose in a healthy way will be a little less stress on this ol' body.

> And there are so many things I would like to do that are not possible

> right now. So, keep the encouragement up...I really do appreciate it.

>

> Love You Much....

>

> Tess

>

>

>

>

[Guest guest]

Hi Marge...I'm off to play Columbo! I've been on jury duty several

times and it's always been interesting. Take good care, Marge. Thanks

for your support....

Much Love....

Tess