Re: Cystic Fibrosis/ROBIN

[Guest guest]

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

>

>

>

>

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> 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.

>

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