Re: Cystic Fibrosis/ROBIN?n

[Guest guest]

n

Wordiness??? Are you kidding?? I wish you went ahead and write a book

about you and your CF child! It would be a best seller among the CF

community, I am dead serious!

> Robin, your open attitude is much appreciated. I am a person wcf

who has

> reared

> three children to adulthood, and the youngest has cystic fibrosis

also.

> That " kid " was

> born in 1966, and I was born in 1937! There can be life after

cystic

> fibrosis!!

> My husband's brother's son had been misdiagnosed as having celiac

syndrome

> (not

> that one cannot have the joys of both!); we found out that he had

cf when I

> was

> about 3/4 of the way in pregnancy with our third child. Hans

turned to me,

> and

> said, " do you have a funny feeling about this? " I admitted that I

sure did;

> this whole

> pregnancy had just been " different " from the others--not more

difficult at

> that point,

> but just " different. " He said that he thought we should prepare

ourselves

> and I agreed so we had a prior to birth meeting at the local

children's

> cystic fibrosis center.

> There was no genetic testing in those days, and not everyone tested

then, or

> does now high in chloride and sodium on a skin test. But we did

know that

> the odds, if

> Hans in fact was a carrier were one in two, not one in four for each

> pregnancy. Well,

> the smallest of our children arrived; the diagnosis was made and

somehow we

> sur

> vived, even in the era of old-fashioned enzymes. " The kid " was and

is

> small, but

> ate like there was no tomorrow, and we went through what everyone

goes

> through,

> what I had been through, and enzymes got better and kid got to

doing better,

> and

> our lives did not fall apart. Would that there had been a list

such as this

> one at the

> time! Would have been wonderful. Thank heavens that we do have one

> another,

> and this wonderful list--the safest space in cf cyberspace, thanks

to the

> wonderful

> people who join it, our wonderful moderators and webmasters, and our

> wonderful

> parents. Sorry about the wordiness, just wanted to respond to your

lovely

> post!

> n Rojas, wcf, 66, mom of 3 adults, youngest wcf; you will not

see my

> hus

> band posting; he died of cancer many years ago, but they men really

are

> important

> on this list!

>

>

> Cystic Fibrosis

>

>

> > Hi my name is Robin,

> > I have a 8 year old with CF. We have had alot of hard times.

> > She does the Pulmozyme and the Albuterol.

> > I would love to hear from anybody. I do enjoy chatting!!! I would

> > love to exchange stories. Email me at any time would love to talk.

> >

> > Robin

> > Mother of 2

> > 8 with CF

> > Bradley 3 w/o cf

> >

> >

> >

> >

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

> > 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]

We'll said. I look forward to n's post and always learn something. I

tell my kids about her and her daughter having CF and it gives a positive spin

to things w/o coming out and saying it!

Rosemary in NY with 3 children (13, 11 and 7)

with CF. I have a dog named TOBI and have

coined the phrase " BREATHE DAMMIT "

[Guest guest]

Aaaaaaaaaaaw! Love, n

Re: Re: Cystic Fibrosis/ROBIN?n

> We'll said. I look forward to n's post and always learn something.

I

> tell my kids about her and her daughter having CF and it gives a positive

spin

> to things w/o coming out and saying it!

>

> Rosemary in NY with 3 children (13, 11 and 7)

> with CF. I have a dog named TOBI and have

> coined the phrase " BREATHE DAMMIT "

>

>

>

[Guest guest]

Hi ,

Thank you for your response. I enjoyed hearing your story.

was 6 weeks old when she was diagnosed with CF. And you are right. It

is not the end of the world. We made 8 years already. And still going strong.

(my daughter) Is as tough as they come.

I thank God every day that she is doing so well. Thank you for your letter. I

would love to chat more. I would love to swap stories.

Have a great day

Robin

Mother of 3

11

8

Bradley Jr. 2

Jesus loves the little children

Lets find a cure for Cystic Fibrosis

1-800-FIGHTCF