Re: Cf friends and pen pals

[Guest guest]

I think it is a great idea, in fact Christian already has " spoken " with a

couple kids with cf. It does make a difference. He said that it was nice to have

someone understand how bad the Tobi tastes or how the vest makes you feel. If

anyone is interested in having their child email with Christian his email

address is TheboyChris1991@... . Just make sure they put something about

penpal with cf in the subject line.

Tina Mom to Christian 12 yowcf

[Guest guest]

e,

I really like this idea. I'm sure Savannah (10 yrs) would like getting mail

but probably wouldn't be to good at writing back. It's hard for me to get her

to answer her E mails. Best of luck getting this to work. Here in Tulsa we do

have get togethers for CF families but since Savannah has MRSA we don't make

them. She does know some other kids w/ CF in our area though but doesn't talk to

them much.

Mom to 2 w/o CF and Savannah w/ CF

[Guest guest]

e,

I think that's a great idea!

Not too long ago, for CF awareness week, Ricky made a laminated book with

his school guidance counselor, all about CF. One of the things he said in

there is that he feels like he is the only one who has CF. This made me sad

because I know lots of parents of kids with CF, and those kids just can't

interact with each other or with Ricky because of cross-infection issues.

So postal mail penpals are a great idea!

I think it would be great for Ricky to have a penpal with CF. I'd be

willing to donate webspace for " ads " or whatever for kids who want penpals.

Ricky has a PO box because he was featured on Make a Child Smile, so I'd put

it on there.

What do you think?

Becky mom of Ricky (8) with CF and Andy (5) no CF

http://www.beckydavis.com

Cf friends and pen pals

I have been wondering about kids with cf having friends with cf. I

know that here in San Diego there are plenty of cf children and in

order to help to realize that she is not the only one out

there who has cf. She knows that there are other people in the world

who have cf, but they are " strangers " so it is difficult for her to

relate. Perhaps it would be worth looking into meeting other cf

kids. IS this discouraged or encouraged? I know the ramifications of

bacteria and other icky stuff being passed around so I am a little

hesitant on this issue.

So as I sit here typing, avoiding what I really should be doing, it

just occurred to me, with all of us having the common link, and

since we are all scattered around the world, perhaps we should start

a pen pal thing. I say " thing " because I think message boards would

be to impersonal, and it should be matched up by age.Also, snail

mail vs. email. would love to talk to kids from other

countries and what kid does not like getting letters, post cards and

pictures from other places? ALso, this expands their world. it shows

them that the world is actually bigger than the city/state they live

in.

This idea comes from seeing Natalia corresponding with the other

older kids ( can we call them kids?)

Ok, so as I look at this pile of laundry saying " wash me " , I need

to go.

Cheers,

e, mom to 10 wcf and Ian 13 nocf

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

The opinions and information exchanged on this list should IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

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

[Guest guest]

Hey, I'm a 24 year old kid!! I'm kidding, I'd love to be a kid

forever, hehe. But I do think kids should correspond with others like

them. See that they are not alone.

I would also love to correspond with 25+, so they can help me deal with

adulthood. Any transition is hard like that. From elementry school to

high school , to college, to adulthood. It's always nice to see that

others can relate.

> I have been wondering about kids with cf having friends with cf. I

> know that here in San Diego there are plenty of cf children and in

> order to help to realize that she is not the only one out

> there who has cf. She knows that there are other people in the world

> who have cf, but they are " strangers " so it is difficult for her to

> relate.  Perhaps it would be worth looking into meeting other cf

> kids. IS this discouraged or encouraged? I know the ramifications of

> bacteria and other icky stuff being passed around so I am a little

> hesitant on this issue.

>

> So as I sit here typing, avoiding what I really should be doing, it

> just occurred to me, with all of us having the common link, and

> since we are all scattered around the world, perhaps we should start

> a pen pal thing. I say " thing " because I think message boards  would

> be to impersonal, and it should be matched up by age.Also, snail

> mail vs. email. would love to talk to kids from other

> countries and what kid does not like getting letters, post cards and

> pictures from other places? ALso, this expands their world. it shows

> them that the world is actually bigger than the city/state they live

> in.

> This idea comes from seeing  Natalia corresponding with the other

> older kids ( can we call them kids?)

> Ok, so as I look at this pile of laundry saying " wash me " , I need

> to go.

>

> Cheers,

> e, mom to 10 wcf and Ian 13 nocf

>

>

<image.tiff>

>

>

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

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

>

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

>

>

>

[Guest guest]

I think it is a wonderful thing for these kids(yes, you too Natalia) to

correspond with each other. I think the problem we have is just like what

Natalia wrote about in her philosophy. We would need to get them to admit

that they are in this category and need or want to correspond to other

children in the same boat. It has to be their idea you know. I as a mother

think it is a great idea.

We have a friend that we met through Great Strides and her daughter is 7 yo.

It has been great for her daughter as well as mine to be a mentor and have a

mentor. She stayed overnight with us not to long ago. We had such a

wonderful time. She thought it was pretty cool that had a vest

just like hers. She also does TOBI too and was just starting her 28days.

She had lots of questions for Steph. However, I think maybe that Steph said

something that she shouldn't have. They were talking about singers and such

and said her favorite singer was Celine Dion and that her niece

died of CF. Well,

the little girl didn't know that you could die from CF. My friend called

and talked to about what she said. We have always been very open

about things with Steph and I forget that everybody doesn't think like we

do. I do think it is good to see and be around other kids with CF, I just

wish there weren't all those XXXX bugs out there.

Tina W., mother of Steph, 18yo wcf

Re: Cf friends and pen pals

Hey, I'm a 24 year old kid!! I'm kidding, I'd love to be a kid

forever, hehe. But I do think kids should correspond with others like

them. See that they are not alone.

I would also love to correspond with 25+, so they can help me deal with

adulthood. Any transition is hard like that. From elementry school to

high school , to college, to adulthood. It's always nice to see that

others can relate.

> I have been wondering about kids with cf having friends with cf. I

> know that here in San Diego there are plenty of cf children and in

> order to help to realize that she is not the only one out

> there who has cf. She knows that there are other people in the world

> who have cf, but they are " strangers " so it is difficult for her to

> relate. Perhaps it would be worth looking into meeting other cf

> kids. IS this discouraged or encouraged? I know the ramifications of

> bacteria and other icky stuff being passed around so I am a little

> hesitant on this issue.

>

> So as I sit here typing, avoiding what I really should be doing, it

> just occurred to me, with all of us having the common link, and

> since we are all scattered around the world, perhaps we should start

> a pen pal thing. I say " thing " because I think message boards would

> be to impersonal, and it should be matched up by age.Also, snail

> mail vs. email. would love to talk to kids from other

> countries and what kid does not like getting letters, post cards and

> pictures from other places? ALso, this expands their world. it shows

> them that the world is actually bigger than the city/state they live

> in.

> This idea comes from seeing Natalia corresponding with the other

> older kids ( can we call them kids?)

> Ok, so as I look at this pile of laundry saying " wash me " , I need

> to go.

>

> Cheers,

> e, mom to 10 wcf and Ian 13 nocf

>

>

<image.tiff>

>

>

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

> The opinions and information exchanged on this list should IN NO WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

> TREATMENTS.

>

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

>

>

>

[Guest guest]

I love this idea. We tried to do a e-mail pen pal with a little boy from

California who was 6 this summer, but it sort of fell apart. the e-mail went

back and forth but they never responded to her last 2 messages. I think that

the parents though that it was me writing the messages, not my daughter, since

she is a bit mature. (I did type them for her but only edited for

clarification) Well it would be great for to be in touch with a girl

of about 5 or so.

Mom of 5 with CF who doesn't know that there is one on the way, yet

Cf friends and pen pals

I have been wondering about kids with cf having friends with cf. I

know that here in San Diego there are plenty of cf children and in

order to help to realize that she is not the only one out

there who has cf. She knows that there are other people in the world

who have cf, but they are " strangers " so it is difficult for her to

relate. Perhaps it would be worth looking into meeting other cf

kids. IS this discouraged or encouraged? I know the ramifications of

bacteria and other icky stuff being passed around so I am a little

hesitant on this issue.

So as I sit here typing, avoiding what I really should be doing, it

just occurred to me, with all of us having the common link, and

since we are all scattered around the world, perhaps we should start

a pen pal thing. I say " thing " because I think message boards would

be to impersonal, and it should be matched up by age.Also, snail

mail vs. email. would love to talk to kids from other

countries and what kid does not like getting letters, post cards and

pictures from other places? ALso, this expands their world. it shows

them that the world is actually bigger than the city/state they live

in.

This idea comes from seeing Natalia corresponding with the other

older kids ( can we call them kids?)

Ok, so as I look at this pile of laundry saying " wash me " , I need

to go.

Cheers,

e, mom to 10 wcf and Ian 13 nocf

[Guest guest]

Same here, had a pen pal with cf for a while but she is rotten about

answering mail so it didn't last long. It is a good idea though.

love,

M

Re: Cf friends and pen pals

e,

I really like this idea. I'm sure Savannah (10 yrs) would like getting mail

but probably wouldn't be to good at writing back.

[Guest guest]

I think that a " big brohter wcf/ big sister wcf " would be a neat

thing for our children too. We can't really know what they are going

through, but a big brother or sister that also has cf would.

Gale

> e,

>

> I think that's a great idea!

>

> Not too long ago, for CF awareness week, Ricky made a laminated

book with

> his school guidance counselor, all about CF. One of the things he

said in

> there is that he feels like he is the only one who has CF. This

made me sad

> because I know lots of parents of kids with CF, and those kids just

can't

> interact with each other or with Ricky because of cross-infection

issues.

> So postal mail penpals are a great idea!

>

> I think it would be great for Ricky to have a penpal with CF. I'd

be

> willing to donate webspace for " ads " or whatever for kids who want

penpals.

> Ricky has a PO box because he was featured on Make a Child Smile,

so I'd put

> it on there.

>

> What do you think?

>

> Becky mom of Ricky (8) with CF and Andy (5) no CF

> http://www.beckydavis.com

>

> Cf friends and pen pals

>

>

> I have been wondering about kids with cf having friends with cf. I

> know that here in San Diego there are plenty of cf children and in

> order to help to realize that she is not the only one out

> there who has cf. She knows that there are other people in the

world

> who have cf, but they are " strangers " so it is difficult for her to

> relate. Perhaps it would be worth looking into meeting other cf

> kids. IS this discouraged or encouraged? I know the ramifications

of

> bacteria and other icky stuff being passed around so I am a little

> hesitant on this issue.

>

> So as I sit here typing, avoiding what I really should be doing,

it

> just occurred to me, with all of us having the common link, and

> since we are all scattered around the world, perhaps we should

start

> a pen pal thing. I say " thing " because I think message boards

would

> be to impersonal, and it should be matched up by age.Also, snail

> mail vs. email. would love to talk to kids from other

> countries and what kid does not like getting letters, post cards

and

> pictures from other places? ALso, this expands their world. it

shows

> them that the world is actually bigger than the city/state they

live

> in.

> This idea comes from seeing Natalia corresponding with the other

> older kids ( can we call them kids?)

> Ok, so as I look at this pile of laundry saying " wash me " , I need

> to go.

>

> Cheers,

> e, mom to 10 wcf and Ian 13 nocf

>

>

>

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

> The opinions and information exchanged on this list should IN NO

WAY

> be construed as medical advice.

>

> PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR

TREATMENTS.

>

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

>

>

>