Re: New on List . . . again & question

[Guest guest]

I would be concerned that the kids are in same class.

Tell her what you know. If we can't be honest with each other (be gentle and

positive) who can we trust?? As parents of kids with CF we must be honest

with each other.

Rosemary in New York with 3 children with CF - they are 12, 9.11, 6...I

coined the phrase " BREATHE DAMMIT " ; and now we have a dog named - are you

ready for this - TOBI after their medication!

[Guest guest]

Hi !

My son is 6, also with cf and asthma.

Because of my involvement worth a support group here in Colorado

Springs, alot of people give my name to newly-diagnosed families. I

try to offer some resources (like this list) but find many people are

easily overwhelmed (I certainly was early on). So mostly I give them

my number and try to meet them. I try to tell them about the elders

on these lists and just keep in touch with them. Just call them now

and then.

Our doctors had books and info for people new to cf, but if she

doesn't have these you might ask the CF office what they have

available. Or clinic.

Please let her know she is not alone.

There are things for kids available on the cf awareness web site (free).

Go to http://www.cfawareness.org and click on AWARENESS MATERIALS &

RESOURCES. The kids activity book is downloadable.

In this case, less is probably better. But do try to keep in touch as

time goes on. This mom may need you more as she developes more

questions.

-Lenora

>Hi,

>

>I was on this list a couple of years ago, but dropped off due to time

>constraints. Although I still have little time, I need to keep up-to-

>date better and have a forum to ask (and answer) questions.

>

>I have a 4 year old daughter named Sydney with CF nd asthma. She is

>doing well now, but we have certainly had our ups and downs. She has

>cultured 2 strains of pseudomonas (1 mucoid), staph a, aspergillus,

>and alcaligenes. She has a g-tube, due to failure to thrive and

>severe oral aversion, but as recently began to eat a lot more (after

>a lot of feeding therapy). Syd had sinus surgery last summer and has

>been doing well since.

>

>Now for the question: Sydney's kindergarten teacher approached me

>today about the little brother of one of Syd's classmates. He was

>diagnosed with CF a couple of days ago and his mom is one of the

>teacher's best friends. She asked if I would talk to the mother. Of

>course I said yes. But then I started thinking about what to say. I

>can describe CF and talk about how much better the prognosis is today

>than years ago, and tell her about the CF Center here, but what else

>should I tell her? I'm worried about overwhelming or scaring her

>even more.

>

>Please let me know what you think would help.

>

>Thanks,

>, mom of Sydney, 4 w/cf

>

>

>

>

>PLEASE do not post religious emails to the list.

>

>

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

>

>

>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]

In a message dated 10/22/2002 3:12:21 PM Central Daylight Time,

monicaattridge@... writes:

>

You could show her pictures of lots of kids from this group and she could see

for herself how healthy kids with CF are and how they can live a very normal

live it's just that we Mom's have to work harder at keeping them healthy. If

you need any pictures I would send you one of my two with CF. Deb A

[Guest guest]

In a message dated 10/22/2002 3:12:21 PM Central Daylight Time,

monicaattridge@... writes:

>

You could show her pictures of lots of kids from this group and she could see

for herself how healthy kids with CF are and how they can live a very normal

live it's just that we Mom's have to work harder at keeping them healthy. If

you need any pictures I would send you one of my two with CF. Deb A

[Guest guest]

In a message dated 10/22/2002 3:12:21 PM Central Daylight Time,

monicaattridge@... writes:

>

You could show her pictures of lots of kids from this group and she could see

for herself how healthy kids with CF are and how they can live a very normal

live it's just that we Mom's have to work harder at keeping them healthy. If

you need any pictures I would send you one of my two with CF. Deb A

[Guest guest]

I think that just knowing that you exist will make her feel better.

She probably does not have many people that relly understand the

emotions that she is experiencing. You'll be a great help.

Gale

> Hi,

>

> I was on this list a couple of years ago, but dropped off due to

time

> constraints. Although I still have little time, I need to keep up-

to-

> date better and have a forum to ask (and answer) questions.

>

> I have a 4 year old daughter named Sydney with CF nd asthma. She

is

> doing well now, but we have certainly had our ups and downs. She

has

> cultured 2 strains of pseudomonas (1 mucoid), staph a, aspergillus,

> and alcaligenes. She has a g-tube, due to failure to thrive and

> severe oral aversion, but as recently began to eat a lot more

(after

> a lot of feeding therapy). Syd had sinus surgery last summer and

has

> been doing well since.

>

> Now for the question: Sydney's kindergarten teacher approached me

> today about the little brother of one of Syd's classmates. He was

> diagnosed with CF a couple of days ago and his mom is one of the

> teacher's best friends. She asked if I would talk to the mother.

Of

> course I said yes. But then I started thinking about what to say.

I

> can describe CF and talk about how much better the prognosis is

today

> than years ago, and tell her about the CF Center here, but what

else

> should I tell her? I'm worried about overwhelming or scaring her

> even more.

>

> Please let me know what you think would help.

>

> Thanks,

> , mom of Sydney, 4 w/cf

[Guest guest]

I think that just knowing that you exist will make her feel better.

She probably does not have many people that relly understand the

emotions that she is experiencing. You'll be a great help.

Gale

> Hi,

>

> I was on this list a couple of years ago, but dropped off due to

time

> constraints. Although I still have little time, I need to keep up-

to-

> date better and have a forum to ask (and answer) questions.

>

> I have a 4 year old daughter named Sydney with CF nd asthma. She

is

> doing well now, but we have certainly had our ups and downs. She

has

> cultured 2 strains of pseudomonas (1 mucoid), staph a, aspergillus,

> and alcaligenes. She has a g-tube, due to failure to thrive and

> severe oral aversion, but as recently began to eat a lot more

(after

> a lot of feeding therapy). Syd had sinus surgery last summer and

has

> been doing well since.

>

> Now for the question: Sydney's kindergarten teacher approached me

> today about the little brother of one of Syd's classmates. He was

> diagnosed with CF a couple of days ago and his mom is one of the

> teacher's best friends. She asked if I would talk to the mother.

Of

> course I said yes. But then I started thinking about what to say.

I

> can describe CF and talk about how much better the prognosis is

today

> than years ago, and tell her about the CF Center here, but what

else

> should I tell her? I'm worried about overwhelming or scaring her

> even more.

>

> Please let me know what you think would help.

>

> Thanks,

> , mom of Sydney, 4 w/cf

[Guest guest]

I think that just knowing that you exist will make her feel better.

She probably does not have many people that relly understand the

emotions that she is experiencing. You'll be a great help.

Gale

> Hi,

>

> I was on this list a couple of years ago, but dropped off due to

time

> constraints. Although I still have little time, I need to keep up-

to-

> date better and have a forum to ask (and answer) questions.

>

> I have a 4 year old daughter named Sydney with CF nd asthma. She

is

> doing well now, but we have certainly had our ups and downs. She

has

> cultured 2 strains of pseudomonas (1 mucoid), staph a, aspergillus,

> and alcaligenes. She has a g-tube, due to failure to thrive and

> severe oral aversion, but as recently began to eat a lot more

(after

> a lot of feeding therapy). Syd had sinus surgery last summer and

has

> been doing well since.

>

> Now for the question: Sydney's kindergarten teacher approached me

> today about the little brother of one of Syd's classmates. He was

> diagnosed with CF a couple of days ago and his mom is one of the

> teacher's best friends. She asked if I would talk to the mother.

Of

> course I said yes. But then I started thinking about what to say.

I

> can describe CF and talk about how much better the prognosis is

today

> than years ago, and tell her about the CF Center here, but what

else

> should I tell her? I'm worried about overwhelming or scaring her

> even more.

>

> Please let me know what you think would help.

>

> Thanks,

> , mom of Sydney, 4 w/cf

[Guest guest]

Hi,

Where can you post pictures of the kids? Just curious! Thanks.

Cheri B., Mom to , 8yo invitro baby wcf & Christian 3yo adopted nocf,

both Gifts from Heaven!

Re: New on List . . . again & question

> In a message dated 10/22/2002 3:12:21 PM Central Daylight Time,

> monicaattridge@... writes:

>

>

> >

>

> You could show her pictures of lots of kids from this group and she could

see

> for herself how healthy kids with CF are and how they can live a very

normal

> live it's just that we Mom's have to work harder at keeping them healthy.

If

> you need any pictures I would send you one of my two with CF. Deb A

>

>

>

[Guest guest]

Hi,

Where can you post pictures of the kids? Just curious! Thanks.

Cheri B., Mom to , 8yo invitro baby wcf & Christian 3yo adopted nocf,

both Gifts from Heaven!

Re: New on List . . . again & question

> In a message dated 10/22/2002 3:12:21 PM Central Daylight Time,

> monicaattridge@... writes:

>

>

> >

>

> You could show her pictures of lots of kids from this group and she could

see

> for herself how healthy kids with CF are and how they can live a very

normal

> live it's just that we Mom's have to work harder at keeping them healthy.

If

> you need any pictures I would send you one of my two with CF. Deb A

>

>

>

[Guest guest]

Hi,

Where can you post pictures of the kids? Just curious! Thanks.

Cheri B., Mom to , 8yo invitro baby wcf & Christian 3yo adopted nocf,

both Gifts from Heaven!

Re: New on List . . . again & question

> In a message dated 10/22/2002 3:12:21 PM Central Daylight Time,

> monicaattridge@... writes:

>

>

> >

>

> You could show her pictures of lots of kids from this group and she could

see

> for herself how healthy kids with CF are and how they can live a very

normal

> live it's just that we Mom's have to work harder at keeping them healthy.

If

> you need any pictures I would send you one of my two with CF. Deb A

>

>

>

[Guest guest]

,

I can email you a picture of Wyatt too if you need it

Christy

> In a message dated 10/22/2002 3:12:21 PM Central Daylight Time,

> monicaattridge@y... writes:

>

>

> >

>

> You could show her pictures of lots of kids from this group and she

could see

> for herself how healthy kids with CF are and how they can live a

very normal

> live it's just that we Mom's have to work harder at keeping them

healthy. If

> you need any pictures I would send you one of my two with CF. Deb A

>

>

>

[Guest guest]

In a message dated 10/22/2002 11:15:58 PM Central Daylight Time,

cheribout@... writes:

http://groups.yahoo.com/group/cfparents/ " >Yahoo! Groups :

cfparents click on the blue line and then click on the left

hand side where is says photos. You also need to log in before you can see

the photos

[Guest guest]

In a message dated 10/22/2002 11:15:58 PM Central Daylight Time,

cheribout@... writes:

http://groups.yahoo.com/group/cfparents/ " >Yahoo! Groups :

cfparents click on the blue line and then click on the left

hand side where is says photos. You also need to log in before you can see

the photos

[Guest guest]

In a message dated 10/22/2002 11:15:58 PM Central Daylight Time,

cheribout@... writes:

http://groups.yahoo.com/group/cfparents/ " >Yahoo! Groups :

cfparents click on the blue line and then click on the left

hand side where is says photos. You also need to log in before you can see

the photos

[Guest guest]

wrote,

She is doing well and at the age of 4 is learning how to read, has been

> writing her alphabet for 2 years, has been writing her name for just under

> that time and is now learning to write her numbers and has been counting for

> just over a year. We are amazed at how smart she is and how much she LOVES to

> learn. I went out and bought her a phonics book and she just loves it.

Hi ,

This sounds so much like Sian! I think that CF genes come with attached

smart genes!! Sian is now six, and in Kindergarten. She is reading at

somewhere between a 10-12 year old level, is in advanced mathmatics

(learning about Eyyptian and Roman numbering systems at the moment), and is

currently writing a story about two unicorns named Nimue and Merlin who are

fraternal twins ( " 'cause they can't be identical, 'cause one is a girl and

the other is a boy. How do you spell fraternal mummy? " )

Keep encouraging your beautiful girl. She is wonderful, just like her mum.

Much love,

Mum to Cate 10yrs wocf and Sian 6yrs wcf, asthma, GERD and ADD?

Canberra Australia