Nana Sharon ...

[Guest guest]

Dear Nana Sharon,

I am originally from Venezuela but have lived in the USA since I was

18 ( my family still lives there), we all speak spanish from Mexico

to Patagonia jumping Brazil and some Islands in the Caribbean. We

may differ in some words as Americans do with Brittons, Australians

or New Zealanders all and all same language. If you would like you

can email me at palazo_a@... or annapalazola@... and

I will give you all my numbers so your daughter in law can contact

me, I will be more than happy to help her with any questions she may

have.

Love and much luck,

mom of a 9 wcf and fluent in both Spanish and English,

Venanzio 6 nocf, Pepe 3 nocf

> Hi, I'm a grandmother who's new here.

>

> My 3 yr old grand daughter was diagnosed at age 6 mos. Even though

> she has had no problems with her lungs so far (all digestive), she

> cultured pos. for pseudomonas the first time at 21 mos., and again

at

> 39 mos. (we're just completing the round of cipro and Tobi).

>

> Virtually everything I've found out has come through my own

> searching. Our clinic seems to be very concerned about parents

> becoming obsessed with avoiding everthing to the point of ruining

the

> families' quality of life. We were simply told " it's

everywhere ,,,

> you can't avoid it " but they did tell us about standing water.

> Through prodding and questioning I also found out about aerators in

> sink faucets, shower heads, etc.

>

> I also found out about the connection between Tobi and deafness the

> first time around. Being a former orchestra teacher (both mine and

> my husband's families have a number of music majors) I was also

> frightened of the Tobi. Again, the clinic assured me that inhaled

> Tobi wasn't a problem. I remain skeptical.

>

> Anyway ..... we need a good common sense approach attempting to

avoid

> another positive culture as long as possible, without going

overboard.

> With summer approaching, I would like to know what actvities MUST

be

> avoided and which we could make a little safer. (ie loves to

> watch her mother garden, and of course, wants to help. She asked

to

> go fishing the other day, etc., etc. and she spends a lot of time

on

> the farm with me too.)

>

> Also, ' mom is from Guatemala, and although she speaks English

> quite well, is not comfortable reading it a great deal. She had

never

> even heard of CF until I guessed at the diagnosis and it was

> confirmed. (There is no history behind either of the very large

> families.) The few materials she was given printed in Spanish

(about

> CF in general) were VERY insufficient. She has had a lot of

> unnecessary anxiety caused by not being quite sure she understood

> everything that she was being told. When was about 18 mos.,

the

> clinic finally realized this and began to bring in a secretary to

> translate. Since then, we have been blessed with some interns and

> residents who have been VERY helpful.

>

> Even though we've searched, it seems that is the only CF child

> in OK of Hispanic heritage on one side. We have not been able to

> find another parent who speaks Spanish or a support group for my

> daughter-in-law. She's doing a remarkable job, but I know having

> someone to write to or converse with in Spanish would make things a

> little easier.

>

> " Nana Sharon "