Hi Everyone

[Guest guest]

It seems that 's reaction with her liver was due to Indocin. It upset

her liver so much that bacterial fighting anti bodies came to help out the

liver and that confused the pathologists with the biopsy they did. Any way

we are lucky to be at Children's hospital in Chicago which is one of the

leading liver places for kids in the world. She is doing better today, but

her immune system has a little more energy now and has redirected it's self

in the form of a flare. It is difficult for her because they don't want to

use NSAIDS or even Tylenol right now. They are starting pulse Solumedrol

tonight.

[Guest guest]

good luck I hope she feels better soon!!!!

>From: Skis@...

>Reply- onelist

> onelist

>Subject: Re: [ ] Hi everyone

>Date: Thu, 24 Jun 1999 23:01:27 EDT

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>From: Skis@...

>

>It seems that 's reaction with her liver was due to Indocin. It upset

>her liver so much that bacterial fighting anti bodies came to help out the

>liver and that confused the pathologists with the biopsy they did. Any way

>we are lucky to be at Children's hospital in Chicago which is one of the

>leading liver places for kids in the world. She is doing better today, but

>her immune system has a little more energy now and has redirected it's self

>in the form of a flare. It is difficult for her because they don't want to

>use NSAIDS or even Tylenol right now. They are starting pulse Solumedrol

>tonight.

>

>---------------------------

[Guest guest]

Hi ,

I'm glad that they are beginning to understand what caused this and that they

are knowledgable to understand how to treat it best. I hope starts to

recover soon and is feeling more like her regular self quickly. I hope the

solumedrol is effective. When does she get to come home? Was her younger sister

allowed to visit her in the hospital? If not, I bet she's missing her!

Thanks for the update, !

Aloha,

Georgina

> From: Skis@...

>

> It seems that 's reaction with her liver was due to Indocin. It upset

> her liver so much that bacterial fighting anti bodies came to help out the

> liver and that confused the pathologists with the biopsy they did. Any way

> we are lucky to be at Children's hospital in Chicago which is one of the

> leading liver places for kids in the world. She is doing better today, but

> her immune system has a little more energy now and has redirected it's self

> in the form of a flare. It is difficult for her because they don't want to

> use NSAIDS or even Tylenol right now. They are starting pulse Solumedrol

> tonight.

[Guest guest]

Hi ,

Diego had pulse of Solumedrol too (a month ago), and this drug alleviated

him enough. Good luck with the pulse

Saludos,

--------------

Re: [ ] Hi everyone

From: Skis@...

It seems that 's reaction with her liver was due to Indocin. It upset

her liver so much that bacterial fighting anti bodies came to help out the

liver and that confused the pathologists with the biopsy they did. Any way

we are lucky to be at Children's hospital in Chicago which is one of the

leading liver places for kids in the world. She is doing better today, but

her immune system has a little more energy now and has redirected it's self

in the form of a flare. It is difficult for her because they don't want to

use NSAIDS or even Tylenol right now. They are starting pulse Solumedrol

tonight.

---------------------------

[Guest guest]

Welcome back Georgina and Josh!

I hope things only are on the upswing now and you guys can settle back to

routine.

We hope that josh is feeling better.

Rena

[Guest guest]

Hi Rena and ,

Thanks for the welcome back :-)

Though Josh was feeling pretty good yesterday and even went to school,

when he woke up today he was crying and very sore, (had a rash but

didn't want me to take his temp so I didn't) ... again. Even a warm bath

didn't help much, so today I kept him home from school. He rested until

about noon and then started feeling okay again. He was so delighted to

receive your thoughtful gift in the mail!!! He's been carrying it

around, up to his room and later back downstairs to the living room, and

reading bits and pieces all day long! He said when he goes online next

time he will pick a thank you card for you and send it to your email.

His idea, not mine :-) I had so much mail and news to catch up on, I

told him I'd need the computer for a while but probably later this

evening. or tomorrow, he can go on.

His classmates even made him a gigantic and very colorful " get well

mural, " with messages and their handprints and signatures. It's about 20

feet long! Josh says he wants to keep it forever. All of the cards and

messages he's received have really brightened him up. He was so happy to

get them! We've been taping them to the door but have run out of space

there :-) The rest will have to go somewhere else. I was getting worried

because Josh had been depressed for about 2 weeks and sort of feeling

sorry for himself. He never really expressed that verbally before so i

thought he was coping really well with this JRA stuff but after so long,

I guess it's to be expected. At the hospital, he happened to be the only

kid there with JRA at this time. There were so many children with all

sorts of serious physical problems and I think it helped him put things

into perspective a bit, but he stills seems more frustrated than usual

about the effects of his illness. Hopefully, things will level out

again.

Thanks again, for your thoughtfullness :-) How is Elliot doing these

days?

Aloha,

Georgina

RenaPT@... wrote:

> Welcome back Georgina and Josh!

> I hope things only are on the upswing now and you guys can settle back to

> routine.

> We hope that josh is feeling better.

> Rena

[Guest guest]

Hi All,

Went to my doctors he had to take me off the white pills, my white blood

count is to low to keep taking the pills. he told me to finish the shots

I have 9 left. Then he will take a test all I can do is cross my fingers

and pray. You know I hate being on this stuff. But at the sme time I am

sceard to get off.Does this make scence

This has been a very looooooong year

This sight has helped me so much THANKS

Jessie

I WILL TAKE TIME TO SAVOR MY SUCCESSES. I WILL SHARE MY VICTORIES WITH

AN ATTITUDE OF GRATITIDE.

[Guest guest]

Jessie

Thats too bad but at least there are all kinds of other txs on the horizon

so don't dispare

My WBC's are also very low panic level

so I go next week to get them retaken

feel pretty crappy when they get this low as everything else gets lower

too

Good Luck

Suzy

From: jessiefromchino@...

Reply-Hepatitis Cegroups

Hepatitis Cegroups

Subject: Re: hi everyone

Date: Wed, 6 Dec 2000 23:49:52 -0800 (PST)

Hi All,

Went to my doctors he had to take me off the white pills, my white blood

count is to low to keep taking the pills. he told me to finish the shots

I have 9 left. Then he will take a test all I can do is cross my fingers

and pray. You know I hate being on this stuff. But at the sme time I am

sceard to get off.Does this make scence

This has been a very looooooong year

This sight has helped me so much THANKS

Jessie

I WILL TAKE TIME TO SAVOR MY SUCCESSES. I WILL SHARE MY VICTORIES WITH

AN ATTITUDE OF GRATITIDE.

________________________________________________________________________________\

_____

Get more from the Web. FREE MSN Explorer download : http://explorer.msn.com

[Guest guest]

Hi Jessie,

Are you sure it was your WHITE blood count? It

is the interferon that causes that to drop, not the

ribavirin pills. They normally effect the red cells.

I don't know that it makes a whole lot of difference

though since you only have 2 weeks to go. Hang in

there, and GOOD LUCK!

Claudine

--- jessiefromchino@... wrote:

> Hi All,

> Went to my doctors he had to take me off the white

> pills, my white blood

> count is to low to keep taking the pills.

__________________________________________________

[Guest guest]

Hi Suzy,

You (and Jessie!) have come too far to have to

stop now! That would be terrible! If your doctor

wants you to stop the interferon ask about trying a

dose reduction first. Often that will do the trick,

and a reduced dose is better than nothing!

How much longer do you have to go now?

Good luck,

Claudine

--- Suzy Balone <suzybalone@...> wrote:

> My WBC's are also very low panic level

__________________________________________________

[Guest guest]

Jessie

he told me to finish the shots

I have 9 left. Then he will take a test all I can do is cross my fingers

and pray. You know I hate being on this stuff. But at the sme time I am

sceard to get off.Does this make scence

This has been a very looooooong year

My husband feels the same way - he is just hoping to start to feel better

once he finally gets off the combo but is afraid to be done with it also.

Let us know what the tests show and how you feel after the next 9 shots are

over with. Good Luck

Winne

[Guest guest]

Dear Jessie,

Hang in there, honey. A beter day, and hopefully, a better treatment is

coming. If nothing else, you have bought your self some time. Thoughts and

prayers are with you. Eat lots of fruit and veggies and take your vitamins

like a good girl.

Have a Merry Christmas.

Anne

[Guest guest]

,

As a parent of a 14 year old son with achondroplasia, I for one, am glad you

posted what you did!! Someone did a great job in helping you love yourself

for who you are and not what everyone else thinks you should be.

I am definately going to have my son read your email. He has never asked to

be taller or even if he could have the limb lengthening done, but we have

discussed it at great lengths. I know his thoughts are much like yours in

regards to this issue.

You see, my son has over 100 surgeries since he was born. He is considered

one of the less than 1% who have what is classified now as having 'severe

achondroplasia'. Those are the children who were part of the 7% that died

before the age of 3 years (because of severe medical complications) but have

been blessed to have the medical care and the experienced doctors to keep

them alive. My son is resiliant, he loves life, he is always happy . . . .

and mentally very bright. But he would never have surgery just because he

thinks it might make him a foot taller. He functions very well in society at

the height he is. If he has surgery it is to keep him alive . . . and to him

that is much more important!

I for one feel you are one very bright and mature young adult. Keep up the

good work!

[Guest guest]

Thanks . I actually found a little time to myself tonight so thats why I

decided to take time out to post. My 7 and 10 year old are spending the night

with friends. My 18 year old has classes tonight and my 16 year old is

downstairs with her friend so I have a little quiet time. My husband and I

are off to Cancun, Mexico for a late anniversary in Sept. We have a hotel

right on the Gulf of Mexico and we are leaving all of the kids home. Gee I

wonder if we will remember what to do by ourselves. LOL My niece just got

married and her and her husband spent their honeymoon there. They had a great

time. I can't wait. Hopefully this vacation I won't shy away from doing

different activities like I did when I was heavy. I feel like I am a brand

new person with all of this weight gone. Liz

[Guest guest]

Dearest Liz

SOOOOO good to see you post, and dont worry about not getting to chat

often! Liz, honey you chatted with me when it was needed most!!

You have been a wonderful support.

As far as being friendly goes. i think the jolly Ms. " Fat-N-Happy "

is gone with the wind!! not that i am no longer happy-- i am

happier than i have ever been in my LIFE!! i just think that when

folks see us standing strong they perceive it as " testy " Now that i

am thin, i can take control so much more easily in different

situations. Liz you are friendly and gorgeous and wonderful just

like always!

keep up the good work! love ya!

xoxoxo

S in VA

> I just wanted to pop in and say hello to everyone. I don't post

often

> but I read alot of the post. I had my MGB in Dec. of 99. I have

gone

> from 280 to 145 and I am 5'11. I would like to lose 10 more pounds

> but I have not lost any weight in about 6 months so I guess thats

it

> for me. I went from a size 24 to a size 6. When people see me who

> haven't seen me in 2 years they ask me if I have some kind of

> illness. Isn't that funny they thought I had health problems when I

> was fat and now they think I have health problems because I am to

> skinny. Just can't seem to win. I had a breast reduction back in

1997

> before I had weight loss surgery I was a DD and the doctor made me

a

> B cup well needless to say I have no boobs now. My sisters laugh

and

> tell me I am shaped like a boy but let me tell you I will take

these

> size A boobs over a size DD any day. I eat less now than I did when

I

> was 6 months post op. I crave salt I eat pretzels for breakfast,

> lunch and dinner. I can't eat a whole lot of things because I get

> sick. No meat for me except tunafish, no rice, no noodles of any

> kind. Bread fills me up to fast. I can't eat anything with milk in

it

> and greasy food is a no no. I've gained 3 pounds the last couple of

> days I think from all the salt that I have been eating. I literally

> lick the salt off the pretzels I crave it. I forget to take my

> vitamins and tums somedays and look out when I do cause I get very

> ugly. My husband will call me on the phone and say Anne have you

> taken your vitamins today. I use to be very easy going before

surgery

> now I find myself very short tempered. Someone told me today since

I

> have lost all my weight I wasn't as friendly. Has anyone else

noticed

> this about themselves? Maybe it's just when I was fat I was to

timid

> to speak up for myself thinking someone was going to make some

remark

> about my weight now I speak up for myself all the time and I think

> people aren't use to it sometimes I blame it on my hormones who

knows

> maybe one day I will figure it out. I have some great before and

> after pics I just haven't figured out how to get them to Trish yet.

> , if you are reading this I glad to hear you are doing

> better. Has anyone heard from Blair lately. I really miss seeing

her

> post. le, glad to see you posting again. , I am still

> waiting for those pics!!! Flo, long time since I have talked with

you

> hope all is well with you and your daughter. , Sorry I haven't

> had much time to chat with you but with 4 kids, a husband and a dog

> plus a full time job it is kinda hard to keep in touch sometimes.

> Hope all is well with you and congrats on the weight loss. You are

> doing great. I have a consult with a doc next Wed. for a tummy

tuck.

> Here's hoping my insurance approves me. My inner thighs are like

> jelly and my butt sags so I have to wear a bathing suit with a

skirt

> on it and no daisy dukes for me. I can't even find a pair of shorts

> in a size 6 that are long enough to cover all the saggy skin. All

the

> shorts out there today all come up to your butt cheeks. So I

couldn't

> find shorts to fit when I was fat now I can't find any shorts to

wear

> cause of all the saggy skin. Go figure. My daughter Autumn had the

> MGB with me in Dec of 99 she was 350 and 5'5 she is now down to

220.

> She wants to go into the Air Force but she has to lose another 70

> pounds for her to get in. We have been looking into different

doctors

> to do a revision for her so she can lose the rest of the weight. We

> have contacted a few different doctors but they all have such long

> waiting list so I guess we will keep looking. I am kinda

disappointed

> that she didn't lose more weight than she did. I wish she had been

> the one to meet her goal instead of me because she is just 18 and

> still considered overweight. I hate to see her have to go through

> another surgery but thats what she wants. Well I think I have

talked

> everyones ear off for now. Just wanted to give everyone an update.

> Congrats to all of you who have met their goal and for those of you

> who haven't hang in there it will come with time. Liz

[Guest guest]

Hey Liz,

Glad all is well with you. I had a breast reduction in 1996...and

another one about six weeks ago. I love small breast...large ones are

WAY over rated.

I eat similarly to you. At first I didn't tolerate too much...now I

just don't like many different foods. I was a strict vegan vegetarian

until I became anemic. Now, I eat mostly fish, chicken or turkey.

But, I don't really like any of them.

I have a flabby lower body...but anything I don't tighten up will be

COVERED up. LOL I bought a two piece tankini swimsuit...for wear only

in the house. Maybe I will try to wear it in public next summer.

I have done better than I expected. I was a slow/average loser at

first. The more I eat, the better I lose. So, I graze all day...I eat

every two hours. I don't eat fatty foods. But, carb cravings are

giving me the blues. I am taking an herb to curb the cravings...and

eating/drinking more protein. I probably don't drink enough

water...but I get what I can. Glad you see you post again as well.

le

[Guest guest]

le, I love those tankinis my daughter Autumn bought a couple of them

and I thought they were so cute. I might go to Walmart where she got hers and

try one on and see how it looks. Does the herb you take to curb your carb

cravings work? I need something like that because all I crave is carbs. I

just went out and brought a whole bunch of water I have to start drinking it

maybe that will jump start my weight loss again. I really need to stay away

from the salt but I crave it. I bet you look great in that tankini your lower

body couldn't look any worse than mine. Keep posting I miss reading your post

you always made me laugh with all of your spunk!!!! Take Care, Liz

[Guest guest]

LOL thats what I am afraid of. I am going there to get rest but I don't

see that happening. Liz

[Guest guest]

dear liz

you will know what to do...it will alllll come back to you real fast

under that mexican moon!!

xoxoxo

> Thanks . I actually found a little time to myself tonight so

thats why I

> decided to take time out to post. My 7 and 10 year old are spending

the night

> with friends. My 18 year old has classes tonight and my 16 year old

is

> downstairs with her friend so I have a little quiet time. My

husband and I

> are off to Cancun, Mexico for a late anniversary in Sept. We have a

hotel

> right on the Gulf of Mexico and we are leaving all of the kids

home. Gee I

> wonder if we will remember what to do by ourselves. LOL My niece

just got

> married and her and her husband spent their honeymoon there. They

had a great

> time. I can't wait. Hopefully this vacation I won't shy away from

doing

> different activities like I did when I was heavy. I feel like I am

a brand

> new person with all of this weight gone. Liz

[Guest guest]

Errrr... who said to stay away from the salt?? No, we NEED salt! Unless, you

have a heart condition or high blood pressure, but still I think we need some.

aW

MGB 5/28/00

214/115ish

Re: Re: Hi everyone

le, I love those tankinis my daughter Autumn bought a couple of them

and I thought they were so cute. I might go to Walmart where she got hers and

try one on and see how it looks. Does the herb you take to curb your carb

cravings work? I need something like that because all I crave is carbs. I

just went out and brought a whole bunch of water I have to start drinking it

maybe that will jump start my weight loss again. I really need to stay away

from the salt but I crave it. I bet you look great in that tankini your lower

body couldn't look any worse than mine. Keep posting I miss reading your post

you always made me laugh with all of your spunk!!!! Take Care, Liz

[Guest guest]

Everyone's doing fine here, Kim (thanks for asking). and I are working

on ways to get c-toma " on the map " , so we've been pretty busy!

I hope you and your family have a wonderful holiday!

Terri

Hi Everyone

> Hi,

> It's been pretty quiet in here. Is everything going okay with

> everyone?

> I hope everyone is not having too stressful of a month with Xmas

> coming up and getting all that wonderful shopping done. Personally I

> hate shopping :-)

> Well I wish everyone a Merry Christmas & Happy and Safe New Year.

> Please keep posting and let me/us know how things are going. I know

> we have quite a few members but they are just being a little shy,

> please don't be afraid to post and share with us your experience or

> worries. We all understand and are here for your support and to give

> advice.

> Take Care,

> Kim

>

>

>

>

[Guest guest]

Hi Kim!

We're doing fine on this end. Vinny goes for his surgery follow up

appointment tomorrow (it's been 5 weeks). Wish us luck. He's been

on drops for the past week to dissolve the foam they used in his ear

to hold the ear drum, etc. I'm assuming they'll do hearing tests at

this appointment. Does anyone know?

Glad to hear I'm not the only woman around that hates shopping! I

think I just had too much of it with my mother when I was growing

up! My husband does most of the shopping - even Xmas! Now, if there

was a way I could get him to shop for his own B-Day and XMas gifts

I'd be set!

As Terri mentioned, we have a project in the works! It's really

exciting and we'll let everyone know about it when we work out more

of the details ourselves!

Take care, and happy holidays!

> Hi,

> It's been pretty quiet in here. Is everything going okay with

> everyone?

> I hope everyone is not having too stressful of a month with Xmas

> coming up and getting all that wonderful shopping done. Personally

I

> hate shopping :-)

> Well I wish everyone a Merry Christmas & Happy and Safe New Year.

> Please keep posting and let me/us know how things are going. I know

> we have quite a few members but they are just being a little shy,

> please don't be afraid to post and share with us your experience or

> worries. We all understand and are here for your support and to

give

> advice.

> Take Care,

> Kim

[Guest guest]

Hi ,

My doctor waited a few months before he did the first hearing test. I

couldn't imagine wearing a headset too soon after the surgery - my whole

side of the head was too tender. And my hearing continued to improve for a

good 18 months following the surgery (now) and may still improve some more.

Jane

>From: " lmazzarell " <lmazzarell@...>

>Reply-cholesteatoma

>cholesteatoma

>Subject: Re: Hi Everyone

>Date: Mon, 10 Dec 2001 16:08:51 -0000

>

>Hi Kim!

>

>We're doing fine on this end. Vinny goes for his surgery follow up

>appointment tomorrow (it's been 5 weeks). Wish us luck. He's been

>on drops for the past week to dissolve the foam they used in his ear

>to hold the ear drum, etc. I'm assuming they'll do hearing tests at

>this appointment. Does anyone know?

>

>Glad to hear I'm not the only woman around that hates shopping! I

>think I just had too much of it with my mother when I was growing

>up! My husband does most of the shopping - even Xmas! Now, if there

>was a way I could get him to shop for his own B-Day and XMas gifts

>I'd be set!

>

>As Terri mentioned, we have a project in the works! It's really

>exciting and we'll let everyone know about it when we work out more

>of the details ourselves!

>

>Take care, and happy holidays!

>

>

>

>

> > Hi,

> > It's been pretty quiet in here. Is everything going okay with

> > everyone?

> > I hope everyone is not having too stressful of a month with Xmas

> > coming up and getting all that wonderful shopping done. Personally

>I

> > hate shopping :-)

> > Well I wish everyone a Merry Christmas & Happy and Safe New Year.

> > Please keep posting and let me/us know how things are going. I know

> > we have quite a few members but they are just being a little shy,

> > please don't be afraid to post and share with us your experience or

> > worries. We all understand and are here for your support and to

>give

> > advice.

> > Take Care,

> > Kim

>

_________________________________________________________________

Get your FREE download of MSN Explorer at http://explorer.msn.com/intl.asp

[Guest guest]

Thanks Jane. I wondered about whether having the headset on would

bother my son or not! We went to the doctor today, and he was very

pleased. He wants Vinny to come back in a month to see the

audiologist, then he will follow up with the doctor a week after that.

He did suction out whatever foam was still in Vinny's ear (to hold

the ear drum in place), so I'm curious to see how that affects his

hearing now.

> > > Hi,

> > > It's been pretty quiet in here. Is everything going okay with

> > > everyone?

> > > I hope everyone is not having too stressful of a month with

Xmas

> > > coming up and getting all that wonderful shopping done.

Personally

> >I

> > > hate shopping :-)

> > > Well I wish everyone a Merry Christmas & Happy and Safe New

Year.

> > > Please keep posting and let me/us know how things are going. I

know

> > > we have quite a few members but they are just being a little

shy,

> > > please don't be afraid to post and share with us your

experience or

> > > worries. We all understand and are here for your support and to

> >give

> > > advice.

> > > Take Care,

> > > Kim

> >

>

>

> _________________________________________________________________

> Get your FREE download of MSN Explorer at

http://explorer.msn.com/intl.asp

[Guest guest]

he is having so many problems getting a job > and he is really getting upset

about alot of things in his life the past few months.>

Have him apply to a temp agency. Depending on his skills level, they'll get

him all kinds of jobs. I did it once and, if I re-entered the job market,

that's what I'd do, again. I would never do the 'want ad' thing: it's too

frustrating.

I was sent to one job, at Continental Airlines. It gave me a chance to let

them see beyond the dwarfism and to show off what I could do; I was hired

full-time within two months. It also gave me a chance to see if I wanted to

work there, if they were willing to make the necessary adjustments, and how

well I'd fit in with the other employees. Also, many companies use temp

agencies for permanent employment.

There are temp agencies for many fields; they are no longer for office

workers, only. Make sure that he checks them out, asking questions like the

number of jobs available in his area, turnover, etc. He won't have health

benefits, but it will get him working and his foot in the door.

good luck,

luthien