[Guest guest]

Thank you Tina! I think that is the route we are going to take. I just

know how my daughter is and I think we will all be better off if we just

go for the s. will also be at Dr. Herzenbergs conference

this weekend so I can ask him many questions, etc. I know the Markells

work great for many, but not for us. We are just a couple weeks away (I

think) from getting them so I will let you know how it goes.

Shook

Retail Operations Manager/Baking Instructor

Vie de France Yamazaki, Inc.

2070 Chain Bridge Rd. Suite 500

Vienna, VA 22182

x374

x374

fax

[Guest guest]

Hey Tia-

You are never going to believe this my little (CF) woke up at 4:45

this morning crawled to the gate and said shoes off! He has never said

anything like that before. I agree with you that it is the whole " freedom "

thing versus the shoes being of bother. I told him no because it is night

night time and put him back to bed.

In regards to the sticker chart we always hung it right on the back of my

son's door and had the stickers on the high shelf of his closet. We did the

ceremonial putting of the sticker on first thing in the morning so he felt

that gratification of doing a good job the night before. I made the chart on

a piece of 8 1/2 - 11 construction paper and would draw different items in

the box. We started with an ice cream cone at 3 nights, then 7 nights

another special treat and at the end of 30 nights he got a toy from Target.

We had to do this for about 3 months to get him to do it on his own! Looks

like we are going to be starting with the 2 year old as soon as he can get

the " reward " concept. Good luck!

>

>Reply-To: nosurgery4clubfoot

>To: nosurgery4clubfoot

>Subject:

>Date: Wed, 08 Sep 2004 11:43:40 -0000

>

>Hi , thanks for the response ~ the sticker idea is great! I

>think something like that may work for Kel. It's not a comfort

>issue because he sleeps all night, I think he got a taste of the

>freedom at night and wants it back! Poor little guy, I was almost

>in tears last night but stayed very " matter of fact " by telling him

>he had to wear them until he was 4, it broke my heart to see him so

>upset. He shares a room with his 21 month old sister and i'm sure

>he wonders why she doesn't have shoes. at least she's still in a

>crib and can't get out of their room while he's stuck there

>thanks again for the idea! take care ~

>Tia & Kelby

>

_________________________________________________________________

Express yourself instantly with MSN Messenger! Download today - it's FREE!

http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

[Guest guest]

Hey Tia-

You are never going to believe this my little (CF) woke up at 4:45

this morning crawled to the gate and said shoes off! He has never said

anything like that before. I agree with you that it is the whole " freedom "

thing versus the shoes being of bother. I told him no because it is night

night time and put him back to bed.

In regards to the sticker chart we always hung it right on the back of my

son's door and had the stickers on the high shelf of his closet. We did the

ceremonial putting of the sticker on first thing in the morning so he felt

that gratification of doing a good job the night before. I made the chart on

a piece of 8 1/2 - 11 construction paper and would draw different items in

the box. We started with an ice cream cone at 3 nights, then 7 nights

another special treat and at the end of 30 nights he got a toy from Target.

We had to do this for about 3 months to get him to do it on his own! Looks

like we are going to be starting with the 2 year old as soon as he can get

the " reward " concept. Good luck!

>

>Reply-To: nosurgery4clubfoot

>To: nosurgery4clubfoot

>Subject:

>Date: Wed, 08 Sep 2004 11:43:40 -0000

>

>Hi , thanks for the response ~ the sticker idea is great! I

>think something like that may work for Kel. It's not a comfort

>issue because he sleeps all night, I think he got a taste of the

>freedom at night and wants it back! Poor little guy, I was almost

>in tears last night but stayed very " matter of fact " by telling him

>he had to wear them until he was 4, it broke my heart to see him so

>upset. He shares a room with his 21 month old sister and i'm sure

>he wonders why she doesn't have shoes. at least she's still in a

>crib and can't get out of their room while he's stuck there

>thanks again for the idea! take care ~

>Tia & Kelby

>

_________________________________________________________________

Express yourself instantly with MSN Messenger! Download today - it's FREE!

http://messenger.msn.click-url.com/go/onm00200471ave/direct/01/

[Guest guest]

Well the casts are still on and haven't slipped anymore. At this

point it is about 1/4 inch. I spoke to Sheila today and told her to

let Dr. H know because I don't know if Dr. Lamm should cast him on

Friday. As I said earlier Dr. H put the last two casts on himself

and they were the slippers. She said he might have us wait until

Moday 9/13 and then Monday 9/20 so Dr. H can do the casting. My

first day back to work was supposed to be Friday the 17th but I

switched my shift with someone thinking I would need that Friday off

to go to land. And of course what day did I switch it

to...Monday the 13th. It will be my first day back after an

extended 5 month maternity leave. My luck has got to get better.

Did Dr. H or Dr. Ponseti tell you that had atypical clubfoot?

I am wondering if that is part of Tommy's problem. Joanne had said

in a previous post that at the symposium they were talking about

atypical feet and saying that they were the small fat feet. Thanks

for answering all my questions and giving me hope.

> > > Help I need some words of encouagement. I know Dr. H

said

> >

> > > was alittle Houdini and managed to slip out of his casts all

the

> > > time. Did it happen alot? It seems as though Tommy's a

slipping

> > > again a little. Not as much as last week but they were only

put

> > on

> > > Saturday. I don't know if we are going to make it a week.

I am

> > > crying...how can the Ponseti method work if the darn casts

won't

> > stay

> > > on. I thought our problems stemmed from our last doctor not

> > knowing

> > > what he was doing. I have no doubts in Dr. Herzenberg's

> > capabilities

> > > so know I am wondering if surgery is going to be

inevitable. Any

> > > words of advice.

> > >

> > >

> > > Tommy Lee 4/23/04 BL CF(sausage feet as per Dr. H)

>

>

>

>

[Guest guest]

Yes Nonnie that was lovely and a very important message there.. Make the

most of each day and we are responsible for our own Happiness.

Thanks for sharing that I think we all needed to hear that. Cheers Jolene

http://www.scottstratten.com/movie.html

Check out this website.. Its worth it for all of us.

IF THERE ARE NO DOGS OR HORSES IN HEAVEN THEN WHEN I DIE I WANT TO GO WHERE

THEY WENT.

HOPEFULLY, there IS a RAINBOW BRIDGE!!

[Guest guest]

Yes Nonnie that was lovely and a very important message there.. Make the

most of each day and we are responsible for our own Happiness.

Thanks for sharing that I think we all needed to hear that. Cheers Jolene

http://www.scottstratten.com/movie.html

Check out this website.. Its worth it for all of us.

IF THERE ARE NO DOGS OR HORSES IN HEAVEN THEN WHEN I DIE I WANT TO GO WHERE

THEY WENT.

HOPEFULLY, there IS a RAINBOW BRIDGE!!

[Guest guest]

Yes Nonnie that was lovely and a very important message there.. Make the

most of each day and we are responsible for our own Happiness.

Thanks for sharing that I think we all needed to hear that. Cheers Jolene

http://www.scottstratten.com/movie.html

Check out this website.. Its worth it for all of us.

IF THERE ARE NO DOGS OR HORSES IN HEAVEN THEN WHEN I DIE I WANT TO GO WHERE

THEY WENT.

HOPEFULLY, there IS a RAINBOW BRIDGE!!

[Guest guest]

Thank you Nonnie, that was very beautiful. I sent it to everyone I know.

Thanks!!!!

Nonnie nonnie_nt@...> wrote:

http://www.scottstratten.com/movie.html

Check out this website.. Its worth it for all of us.

IF THERE ARE NO DOGS OR HORSES IN HEAVEN THEN WHEN I DIE I WANT TO GO WHERE

THEY WENT.

HOPEFULLY, there IS a RAINBOW BRIDGE!!

[Guest guest]

Thank you Nonnie, that was very beautiful. I sent it to everyone I know.

Thanks!!!!

Nonnie nonnie_nt@...> wrote:

http://www.scottstratten.com/movie.html

Check out this website.. Its worth it for all of us.

IF THERE ARE NO DOGS OR HORSES IN HEAVEN THEN WHEN I DIE I WANT TO GO WHERE

THEY WENT.

HOPEFULLY, there IS a RAINBOW BRIDGE!!

[Guest guest]

Thank you Nonnie, that was very beautiful. I sent it to everyone I know.

Thanks!!!!

Nonnie nonnie_nt@...> wrote:

http://www.scottstratten.com/movie.html

Check out this website.. Its worth it for all of us.

IF THERE ARE NO DOGS OR HORSES IN HEAVEN THEN WHEN I DIE I WANT TO GO WHERE

THEY WENT.

HOPEFULLY, there IS a RAINBOW BRIDGE!!

[Guest guest]

Hello Kim,

How are you my dear and faithful friend? I hope all is well with you

and your family.

Thank you for your concern for me and mine. Jack is in Fort

Lauderdale, Florida with my Aunt. Colette (my wife) and I shipped him

out several weeks ago. He is happy and providing much needed company

for my Aunt and her granddaughter while on her Summer vacation.

My wife is happier and so am I. Missing Jack has not been nearly as

difficult as I expected. The " Good And Faithful " has comforted me

through it all.

Thank you so much for you interest and not forgetting me. I do

appreciate you and your thoughtfulness.

Take care of yourself my dear and faitful friend.

love_from_ronald

PS Is your old email address still active? The reason I ask is

because I have sent a few emails to your old address. Please let me

know if I should use this address exclusively instead. :}

Love from

> DEar ,

>

>

> Yes we would all love an update on you and Jack and how things are

going?

> How is the puppy? Has the housebreaking took hold yet? I hope

all is well

> with you and yours.

>

> Take care,

> Kim

> NS Moderator

[Guest guest]

Dear

I would never forget you. I am glad that it has all worked out in the end with Jack and for your wife and you. Sometimes the things we think will be so difficult or that we think are the right decisions turn out not to be after all. (I hope I said that right, it sounds all jumbled now). It sounds like it worked out for the best somehow and that is what is important.

Have you started the new treatment/medication you mentioned before? I would be most interested in knowing how it is going if you have.

I do not use the other email any longer. I had some computer problems a while back and changed my accounts. I am sorry that I have missed your emails.

Do Take Care ,

Kim

NS Moderator

[Guest guest]

-

Really good suggestions with the bartering with others. We sometimes forget that we can do these things, thinking everything takes cold hard cash. I used to cut my boys hair myself all the time and still do my youngest daughters. I have only taken her one time for an actual haircut by someone else, just for a special treat. I often forget that I have done all these haircuts myself! Things have been so tight for us so often in our lives - when we were studying especially. Memories!

I have to say a disney video for an air conditioner is a great trade! assuming the a/c works and the video isnt a rare one!

I am sorry that you are feeling so badly and hope that you get some relief soon. I have been really out of lately too. A lot of pain - much more so than normal in fact, much much more so.

Take care,

Kim

NS Moderator

[Guest guest]

-

Really good suggestions with the bartering with others. We sometimes forget that we can do these things, thinking everything takes cold hard cash. I used to cut my boys hair myself all the time and still do my youngest daughters. I have only taken her one time for an actual haircut by someone else, just for a special treat. I often forget that I have done all these haircuts myself! Things have been so tight for us so often in our lives - when we were studying especially. Memories!

I have to say a disney video for an air conditioner is a great trade! assuming the a/c works and the video isnt a rare one!

I am sorry that you are feeling so badly and hope that you get some relief soon. I have been really out of lately too. A lot of pain - much more so than normal in fact, much much more so.

Take care,

Kim

NS Moderator

[Guest guest]

,

You are right "girlfriend talks" are wonderful aren't they. I tried to "bridge the gap" with my mom just today - oh brother! - I asked her to go to the craft store with me hoping a conversation would be able to start. NO such luck! it is just impossible I tell you. You start to talk to her and get nothing back. I tried to start talking to her about what the Dr said about the depression and the topomax, and finally she started to talk! To change the subject in the middle of my sentence to talk about little horses! I give up. She is just not interested in hearing about anything to do with my illness or whats going on wiht me. It is hurtful and I wont subject myself to opening the wound again - ever.

My husband has gotten better over the years with listening and talking, but its still not like talking to an understanding girlfriend. My sons seem to be good communicators though and I hope they keep it up into their adult lives. though you never know do you?

i am really sorry that you are feeling so down, i can relate, as you know. it is good that you are thinking to get help from your dr. i hope you can get in , in time for things to settle down before your son and his wife come into town.

My kids just graduated. I usually always cry at things like that, let alone weddings!! even watching a soap opera wedding would send me into hysterics!1 i had to take medication to keep me in control or I know I would lose it! How pathetic is that?! i can understand what yuou mean about not being able to cry at the wedding or "it not being a pretty sight", understand exactly.

Take care

Kim

NSModerator

[Guest guest]

,

You are right "girlfriend talks" are wonderful aren't they. I tried to "bridge the gap" with my mom just today - oh brother! - I asked her to go to the craft store with me hoping a conversation would be able to start. NO such luck! it is just impossible I tell you. You start to talk to her and get nothing back. I tried to start talking to her about what the Dr said about the depression and the topomax, and finally she started to talk! To change the subject in the middle of my sentence to talk about little horses! I give up. She is just not interested in hearing about anything to do with my illness or whats going on wiht me. It is hurtful and I wont subject myself to opening the wound again - ever.

My husband has gotten better over the years with listening and talking, but its still not like talking to an understanding girlfriend. My sons seem to be good communicators though and I hope they keep it up into their adult lives. though you never know do you?

i am really sorry that you are feeling so down, i can relate, as you know. it is good that you are thinking to get help from your dr. i hope you can get in , in time for things to settle down before your son and his wife come into town.

My kids just graduated. I usually always cry at things like that, let alone weddings!! even watching a soap opera wedding would send me into hysterics!1 i had to take medication to keep me in control or I know I would lose it! How pathetic is that?! i can understand what yuou mean about not being able to cry at the wedding or "it not being a pretty sight", understand exactly.

Take care

Kim

NSModerator

[Guest guest]

i am sorry that you are suffering with pain too. it does seem that when we are at our worse and needing that kindness nad caring from others, that very kindness can throw us over the edge doesnt it? i have experienced it myself, maybe because we wait for it for so long, the tenderness touches us? i always think its because i have so much bottled up inside, their kindness brings some feelings to the surface and causes us to "feel something" threatening to unleash all the rest of the feelings that we have been struggling to keep buried so deep for so long. Kind of like don't make me feel anything at all or I won't be able to stop feeling - you will open a pandoras box so to speak. Does that make sense? Well that was kind of personal I guess. You probably don't feel that way at all and are thinking what a looney, and what does she have buried deep she is trying not to feel! We wont go there today.

It all made perfect sense to me, my friend! ... You have such a beautiful way with words ... I think you do so much better when you just write ... not think about it ... just write ... your words provide so much "human" comfort ... even though you were writing to , I so enjoyed reading this and felt comforted by it myself ...

thank you for writing the way you do,

Joan

"I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly."

[Guest guest]

i am sorry that you are suffering with pain too. it does seem that when we are at our worse and needing that kindness nad caring from others, that very kindness can throw us over the edge doesnt it? i have experienced it myself, maybe because we wait for it for so long, the tenderness touches us? i always think its because i have so much bottled up inside, their kindness brings some feelings to the surface and causes us to "feel something" threatening to unleash all the rest of the feelings that we have been struggling to keep buried so deep for so long. Kind of like don't make me feel anything at all or I won't be able to stop feeling - you will open a pandoras box so to speak. Does that make sense? Well that was kind of personal I guess. You probably don't feel that way at all and are thinking what a looney, and what does she have buried deep she is trying not to feel! We wont go there today.

It all made perfect sense to me, my friend! ... You have such a beautiful way with words ... I think you do so much better when you just write ... not think about it ... just write ... your words provide so much "human" comfort ... even though you were writing to , I so enjoyed reading this and felt comforted by it myself ...

thank you for writing the way you do,

Joan

"I believe that friends are quiet angels who lift us to our feet when our wings have trouble remembering how to fly."

[Guest guest]

,

I am trying to catch up on my rest. Getting little of that actually done. The kids are going to Ohio State. I am very happy with the choice. So were they. I just got overtired and overwhelmed with everything, I hope I can sort myself out fairly quickly and get back on track.

Take care,

Kim

[Guest guest]

,

I am trying to catch up on my rest. Getting little of that actually done. The kids are going to Ohio State. I am very happy with the choice. So were they. I just got overtired and overwhelmed with everything, I hope I can sort myself out fairly quickly and get back on track.

Take care,

Kim

[Guest guest]

Kim, There is a theory out there that since those injured parts of ourselves remain fixed and unfinished, they can function no better than their maturity level. I am mentioning this in regard to others appearing not to care about us or our struggles with this illness. These immature functions of the soul can't function any better in the present than they could in the past. They haven't "grown up" enough yet, and that will take time. That's why telling people to do or understand things with parts of themselves that are immature is futile. It will always lead to failure. ...in other words... We can't do something with what we don't have. For instance...I still have trouble trusting men..even though I'm nearly 49...because of what happened to me when i was much younger and I haven't done much work on correcting that by getting into relationships with men as friends and learning

to slowly trust them again. By asking people to understand us and our illness...we have to give them the same patience that we would also want in confronting a new situation in our lives. People adjust at different speeds just as adjustment varies in each of us with sarcoidosis. My relationships with people in my family is constantly evolving concerning this as time goes on. Some will never get it. Fact. Some will get abit of it. and some may only understand when they also get sick. Demanding that someone function on an adult level with capabilities that aren't developed yet is an judgement on an innocent person. As for me some days I look and act somewhat sane and on other days ???????....watch out. When I 'act out'...then I know I'm dealing with an area that I am in definite need of growing up in yet. Of course we should be ready to explain what's going on to other people but I don't generally count on

being asked anymore. Have a great weekend and REST.....time will go faster than you think . hugs hugs and more hugs S.NeuroSarcoid66@... wrote:

I am so excited for you that your son and his wife are coming home! You must be thrilled! I am sure it is fun to redo the room for them too. How long has it been since they were home?

You are probably right, about the time things changing being when the visit became too long. It is just hurtful to see it that way and so I search for a different reason. My mom begs us to come home when we are in Kuwait. So I don't get it, but well, she is hypocritical about everything and never says honestly what she means about anything in life. This drives me insane about people. Better to be upfront nicely and honestly that to cause this kind of problems and hurt.

I never talk about being ill with people, I too have learned, like Marla and Tracie said in their posts too, people just do not want to hear it after a while, you have to be very careful not to become your illness. And you have to understand their point of view listening to complaints that go on and on day after day and define who you are on a daily basis. This is sometimes hard to break away from when we are so sick - to start having a life outside of NS or whatever we have - to learn to have conversation that do not involve / include our illness that does in fact control our entire day. But I did learn how to do this. I have my close friend who shares these things with me and is a confidant and support for me and really that is it ,her and this group. Other than that, those around me, are clueless to my illness as it effects my daily life. Family wise - I try to tell them as I have said before about my illness and what I have, and how I

need help, etc, the implications of the disease, etc, but well you know the story, I wont go into it again.

Whatever the trouble is, I need to let it go and move on, it is really hurting me, and I am getting all emotional again and crying costantly at the drop of a hat, everyone is looking at me with puffy red eyes all the time, its ridiculous. No one else cares about our relationship, I do not know why I am so upset over it.

Take care, and enjoy your visit with your son!

Kim

NS Moderator~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Kim, There is a theory out there that since those injured parts of ourselves remain fixed and unfinished, they can function no better than their maturity level. I am mentioning this in regard to others appearing not to care about us or our struggles with this illness. These immature functions of the soul can't function any better in the present than they could in the past. They haven't "grown up" enough yet, and that will take time. That's why telling people to do or understand things with parts of themselves that are immature is futile. It will always lead to failure. ...in other words... We can't do something with what we don't have. For instance...I still have trouble trusting men..even though I'm nearly 49...because of what happened to me when i was much younger and I haven't done much work on correcting that by getting into relationships with men as friends and learning

to slowly trust them again. By asking people to understand us and our illness...we have to give them the same patience that we would also want in confronting a new situation in our lives. People adjust at different speeds just as adjustment varies in each of us with sarcoidosis. My relationships with people in my family is constantly evolving concerning this as time goes on. Some will never get it. Fact. Some will get abit of it. and some may only understand when they also get sick. Demanding that someone function on an adult level with capabilities that aren't developed yet is an judgement on an innocent person. As for me some days I look and act somewhat sane and on other days ???????....watch out. When I 'act out'...then I know I'm dealing with an area that I am in definite need of growing up in yet. Of course we should be ready to explain what's going on to other people but I don't generally count on

being asked anymore. Have a great weekend and REST.....time will go faster than you think . hugs hugs and more hugs S.NeuroSarcoid66@... wrote:

I am so excited for you that your son and his wife are coming home! You must be thrilled! I am sure it is fun to redo the room for them too. How long has it been since they were home?

You are probably right, about the time things changing being when the visit became too long. It is just hurtful to see it that way and so I search for a different reason. My mom begs us to come home when we are in Kuwait. So I don't get it, but well, she is hypocritical about everything and never says honestly what she means about anything in life. This drives me insane about people. Better to be upfront nicely and honestly that to cause this kind of problems and hurt.

I never talk about being ill with people, I too have learned, like Marla and Tracie said in their posts too, people just do not want to hear it after a while, you have to be very careful not to become your illness. And you have to understand their point of view listening to complaints that go on and on day after day and define who you are on a daily basis. This is sometimes hard to break away from when we are so sick - to start having a life outside of NS or whatever we have - to learn to have conversation that do not involve / include our illness that does in fact control our entire day. But I did learn how to do this. I have my close friend who shares these things with me and is a confidant and support for me and really that is it ,her and this group. Other than that, those around me, are clueless to my illness as it effects my daily life. Family wise - I try to tell them as I have said before about my illness and what I have, and how I

need help, etc, the implications of the disease, etc, but well you know the story, I wont go into it again.

Whatever the trouble is, I need to let it go and move on, it is really hurting me, and I am getting all emotional again and crying costantly at the drop of a hat, everyone is looking at me with puffy red eyes all the time, its ridiculous. No one else cares about our relationship, I do not know why I am so upset over it.

Take care, and enjoy your visit with your son!

Kim

NS Moderator~~~~ *** ~~~ *** ~~~ *** ~~~~The Neurosarcoidosis CommunityNS CHAT:- Has been cancelled for now.Message Archives:-http://groups.yahoo.com/group/Neurosarcoidosis/messagesMembers Database:-Listings of locations, phone numbers, and instant messengers.http://groups.yahoo.com/group/Neurosarcoidosis/database

[Guest guest]

Quint,

I do believe you've got it right!!!!!!!

It's good to see you posting. You have been missed. How are you? How's Joan?

NOW__WHERE IS FRANKIE BEAR???

Tracie

[Guest guest]

Quint,

I do believe you've got it right!!!!!!!

It's good to see you posting. You have been missed. How are you? How's Joan?

NOW__WHERE IS FRANKIE BEAR???

Tracie

[Guest guest]

Quint,

I do believe you've got it right!!!!!!!

It's good to see you posting. You have been missed. How are you? How's Joan?

NOW__WHERE IS FRANKIE BEAR???

Tracie