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I just want to thank everyone who has responded to my search for

Spanish speaking parents of CF kids. I now have quite a number of

people and web sites to contact. All I have to do now is convince

that she CAN use the " web " (she'll either have to use my

computer or we'll have to get her one, so it may take a little

while), but just knowing that all these resources exist is simply

wonderful.

Now, the PA. Yes Jan, it does grow in the screens in the aerators.

I've now removed mine. Our nurse also told me about the shower heads

which also allow the bacteria to become somewhat aerosolized when

they are turned on. Since loves showers, I'm going to fix one

shower head so I can easily remove it and replace it with one that

has been thoroughtly sanitized for her. I still worry about her

visiting where there are tropical fish aquariums, although they

are " healthy " , covered, aquariums (fish with pseudomonas show

definite signs). I really want to learn more about this. But am not

finding too much info. I did find that it is more of a problem in

salt water aquariums, just the opposite of what I would have thought!

We were initially worried about my birds, but the Drs. say as long

as they're healthy, they're OK (of course loves them too). Since

birds have very delicate respiratory systems, it's very easy to spot

an illness (pseudomonas in them causes respiratory symptoms almost

immediately). I do use hepa filters for " dust " control(had them for

the birds respiratory health BEFORE was born).

I still would like to know what precautions people take with the kids

playing OUTSIDE. Are most water sports (aside from well treated

swimming pools) totally " off limits " . What about trips to nurseries

or greenhouses to buy yard plants? Are a large number of potted house

plants a danger? If a " mulching " mower is used on the lawn, doesn't

the decaying " mulch " create a danger in play areas? What about

children's sandboxes that are outside?

I could go on all night, but where do you draw the line between

common sense and making life miserable for everyone?

" Nana " Sharon

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In the meantime , perhaps you could go to the sites & PRINT much info for

her. Especially ones you would know would help her or be of interest to her

needs. You are a great friend. She will know this too.

LOVE & HUGS, grandmomBEV

Thanks everyone

I just want to thank everyone who has responded to my search for

Spanish speaking parents of CF kids. I now have quite a number of

people and web sites to contact. All I have to do now is convince

that she CAN use the " web " (she'll either have to use my

computer or we'll have to get her one, so it may take a little

while), but just knowing that all these resources exist is simply

wonderful.

Now, the PA. Yes Jan, it does grow in the screens in the aerators.

I've now removed mine. Our nurse also told me about the shower heads

which also allow the bacteria to become somewhat aerosolized when

they are turned on. Since loves showers, I'm going to fix one

shower head so I can easily remove it and replace it with one that

has been thoroughtly sanitized for her. I still worry about her

visiting where there are tropical fish aquariums, although they

are " healthy " , covered, aquariums (fish with pseudomonas show

definite signs). I really want to learn more about this. But am not

finding too much info. I did find that it is more of a problem in

salt water aquariums, just the opposite of what I would have thought!

We were initially worried about my birds, but the Drs. say as long

as they're healthy, they're OK (of course loves them too). Since

birds have very delicate respiratory systems, it's very easy to spot

an illness (pseudomonas in them causes respiratory symptoms almost

immediately). I do use hepa filters for " dust " control(had them for

the birds respiratory health BEFORE was born).

I still would like to know what precautions people take with the kids

playing OUTSIDE. Are most water sports (aside from well treated

swimming pools) totally " off limits " . What about trips to nurseries

or greenhouses to buy yard plants? Are a large number of potted house

plants a danger? If a " mulching " mower is used on the lawn, doesn't

the decaying " mulch " create a danger in play areas? What about

children's sandboxes that are outside?

I could go on all night, but where do you draw the line between

common sense and making life miserable for everyone?

" Nana " Sharon

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

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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Hi Nanna Sharon,

I wanted to answer your questions about the outside play and special

precautions. I let play in the sand box and I let her dig in the dirt

and help me garden, (she loves to grow things) I let her come to the nursery to

help me pick things out but I don't keep houseplants (I kill them and having the

dirt in the house worries me because of b.cepacia.) can play in treated

pools or the kind you dump out, we don't have any lakes around us but I have let

her play at the beach and in the ocean. The big thing is to wash the hands

after those activities with antibacterial soap and/or hand sanitizer. I want

her to do the things that she loves but I want her to be safe too. I can't put

her in a bubble. And the PA really is everywhere!

Thanks everyone

I just want to thank everyone who has responded to my search for

Spanish speaking parents of CF kids. I now have quite a number of

people and web sites to contact. All I have to do now is convince

that she CAN use the " web " (she'll either have to use my

computer or we'll have to get her one, so it may take a little

while), but just knowing that all these resources exist is simply

wonderful.

Now, the PA. Yes Jan, it does grow in the screens in the aerators.

I've now removed mine. Our nurse also told me about the shower heads

which also allow the bacteria to become somewhat aerosolized when

they are turned on. Since loves showers, I'm going to fix one

shower head so I can easily remove it and replace it with one that

has been thoroughtly sanitized for her. I still worry about her

visiting where there are tropical fish aquariums, although they

are " healthy " , covered, aquariums (fish with pseudomonas show

definite signs). I really want to learn more about this. But am not

finding too much info. I did find that it is more of a problem in

salt water aquariums, just the opposite of what I would have thought!

We were initially worried about my birds, but the Drs. say as long

as they're healthy, they're OK (of course loves them too). Since

birds have very delicate respiratory systems, it's very easy to spot

an illness (pseudomonas in them causes respiratory symptoms almost

immediately). I do use hepa filters for " dust " control(had them for

the birds respiratory health BEFORE was born).

I still would like to know what precautions people take with the kids

playing OUTSIDE. Are most water sports (aside from well treated

swimming pools) totally " off limits " . What about trips to nurseries

or greenhouses to buy yard plants? Are a large number of potted house

plants a danger? If a " mulching " mower is used on the lawn, doesn't

the decaying " mulch " create a danger in play areas? What about

children's sandboxes that are outside?

I could go on all night, but where do you draw the line between

common sense and making life miserable for everyone?

" Nana " Sharon

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Hi Nanna Sharon,

I wanted to answer your questions about the outside play and special

precautions. I let play in the sand box and I let her dig in the dirt

and help me garden, (she loves to grow things) I let her come to the nursery to

help me pick things out but I don't keep houseplants (I kill them and having the

dirt in the house worries me because of b.cepacia.) can play in treated

pools or the kind you dump out, we don't have any lakes around us but I have let

her play at the beach and in the ocean. The big thing is to wash the hands

after those activities with antibacterial soap and/or hand sanitizer. I want

her to do the things that she loves but I want her to be safe too. I can't put

her in a bubble. And the PA really is everywhere!

Thanks everyone

I just want to thank everyone who has responded to my search for

Spanish speaking parents of CF kids. I now have quite a number of

people and web sites to contact. All I have to do now is convince

that she CAN use the " web " (she'll either have to use my

computer or we'll have to get her one, so it may take a little

while), but just knowing that all these resources exist is simply

wonderful.

Now, the PA. Yes Jan, it does grow in the screens in the aerators.

I've now removed mine. Our nurse also told me about the shower heads

which also allow the bacteria to become somewhat aerosolized when

they are turned on. Since loves showers, I'm going to fix one

shower head so I can easily remove it and replace it with one that

has been thoroughtly sanitized for her. I still worry about her

visiting where there are tropical fish aquariums, although they

are " healthy " , covered, aquariums (fish with pseudomonas show

definite signs). I really want to learn more about this. But am not

finding too much info. I did find that it is more of a problem in

salt water aquariums, just the opposite of what I would have thought!

We were initially worried about my birds, but the Drs. say as long

as they're healthy, they're OK (of course loves them too). Since

birds have very delicate respiratory systems, it's very easy to spot

an illness (pseudomonas in them causes respiratory symptoms almost

immediately). I do use hepa filters for " dust " control(had them for

the birds respiratory health BEFORE was born).

I still would like to know what precautions people take with the kids

playing OUTSIDE. Are most water sports (aside from well treated

swimming pools) totally " off limits " . What about trips to nurseries

or greenhouses to buy yard plants? Are a large number of potted house

plants a danger? If a " mulching " mower is used on the lawn, doesn't

the decaying " mulch " create a danger in play areas? What about

children's sandboxes that are outside?

I could go on all night, but where do you draw the line between

common sense and making life miserable for everyone?

" Nana " Sharon

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>>I could go on all night, but where do you draw the line between

common sense and making life miserable for everyone?<<

Hi Sharon,

I have found my peace of mind in that I only worry about cross-

infections in the hospital and from other pwcf. We don't allow Fiona

to meet other pwcf. And we are very cautious during our clinic

visits. I think one can't protect the kids from bacteria in the

normal environment. We wash our hands a lot, don't let moist towels

lay around in the bathroom, Fiona uses separate toothbrushs in the

morning and in the evening and we let the first two gallons of water

go every morning. Silke needs those little things to get the feeling

that she has done everything possible.

Peace

Torsten, dad of Fiona 6wcf and Sebastian newborn wocf

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Guest guest

>>I could go on all night, but where do you draw the line between

common sense and making life miserable for everyone?<<

Hi Sharon,

I have found my peace of mind in that I only worry about cross-

infections in the hospital and from other pwcf. We don't allow Fiona

to meet other pwcf. And we are very cautious during our clinic

visits. I think one can't protect the kids from bacteria in the

normal environment. We wash our hands a lot, don't let moist towels

lay around in the bathroom, Fiona uses separate toothbrushs in the

morning and in the evening and we let the first two gallons of water

go every morning. Silke needs those little things to get the feeling

that she has done everything possible.

Peace

Torsten, dad of Fiona 6wcf and Sebastian newborn wocf

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