RE: how to make them wash their hands???

December 21, 2003

I well scan a small information sheet on Monday to you on a study that

was made on why to wash the hand. I have buttons also BUT they would not get

to you in time for the party. BUT, if you give me your address I will still

send and you can use them /wear them around any of them. Also ask them to

wear for each other a reminder/ If they love Torin so much , maybe they will

take it as their job to help you tell the others. It just might work.

SEND ME YOUR MAILING ADDRESS. NO P.O. BOX NUMBER THOUGH .

LOVE & HUGS, GrandmomBEv

how to make them wash their hands???

hi!!

yesterday we had a family party at my husband's aunts house. And no

one seem to understand that they need to wash their hands and to

make it really perfect his sister takes her niece that is sick on

antibiotics and say...she is taking medicine so it is ok...I believe

it is not. I would keep the baby far but she need to talk to the

girl to be far too...I don't know. And everybody was playing w/ the

girl and after wanting to hold my son...I gave up from waiting

people to wash their hands and decided to hold him myself all the

time. I even took some hand's sanitizer. No one care...seems like

they ignore me. And my husband is kinda slow about ask people to do

things or he forgets...i don't know. the thing is...soon it will be

the christimas party at his grandma's house...same people...I will

take the sanitizer and tryto make people use it...well...I am really

shy and the english don't help so much...so I was thinking to send

some material or give them some material to ready in the bigining of

the x-mas party...something fast and easy to read but that make them

understand that they need to wash their hands. they r crazy for

torin...but they don't understand that he is not cured since he left

the NICU. Anyone has any idea where I can find some material easy

and fast to them to ready about how it is inportant to them to wash

there hands and what can happen to a cf baby it they have a bad cold

or flu...how it is different from a normal baby...I am thinking

about print some e-mails...so if someone could help writing a post

so I can do so....Maybe I am overeacting...don't know...

val

mum to torin 11 months w/cf and coughing a lot today

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

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.

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

December 21, 2003

Val,

I pasted below a copy of the letter I emailed to my family. It is a

very touchy subject and one that I had to address or I was going to

go insane. It's long but I couldn't seem to make it shorter and have

the same effect.

Joe

Dear Family,

I'm writing this letter in hopes of diffusing any present or future

anxiety for the family regarding Abby's CF and protecting her from

illness.

I hope that everyone will take an interest in and learn about CF only

because of your love for Abby and your concern for her future. This

letter isn't intended to overload you with technical CF talk but to

explain why CF keeps us on alert during the cold season.

Abby's immune system is just as capable of defending her from

respiratory illnesses as yours or mine. In the event she does catch

one however it, understandably, causes Kathy and me a lot of worry.

It could be a lot more than just an inconvenience for us. The reason

for this is that Abby's mucous is so much thicker and harder to clear

than ours is. If there is enough congestion associated with the

virus or whatever and it gets in her chest - which, as you know, is

very common - it could very easily land her in the hospital. She

would need to be hospitalized if we could not clear the mucous with

extra CPT her lungs getting overwhelmed with the mucous and her

airways getting clogged up.

When this happens it causes two problems - one potentially dangerous

short-term and the other for certain trouble for her long-term: The

short-term one is that she wouldn't be getting enough oxygen in her

blood and would have to be on O2 support. The long-term and main one

is that the overproduction of mucous stopping up small

airway " pockets " in her lungs breeds bacterial infection. This

infection causes inflammation, which causes scar tissue and loss of

lung function. This is called a CF exacerbation. That's what she

had in January when she was diagnosed. It may not have occurred if

we'd known she had CF and were giving CPT.

Just because Abby gets a cold doesn't mean she'll end up in the

hospital. Twice since she's been home she's had nasty chest colds

and we were able to literally " beat it out of her " .

Anyone that knew me before Abby's diagnosis knows that I was always

a " germ freak " . Who knows? God may have thought about this when he

picked me to be Abby's Dad! BUT I have really had to get a grip on

this since CF entered our lives. The doctors warned us that many

fall into the trap of being over protective and drive themselves (and

their kids) nuts. I didn't really understand why until I began

reading and learning about CF. I learned all about the bacteria that

can grow in CF'rs lungs, the damage they can do and HOW THEY CAN

ACQUIRE THEM (LOL), which, yes, is enough to put any Dad on Red Alert

and especially me.

Over the last year I have gotten a lot better. I realize Abby is

going to get colds at times and she's also going to get bacteria in

her lungs as all CF'rs do. I can't prevent all of it no matter what

I do. However, we can prevent a lot of it. I have learned that we

MUST take all practical measures to protect Abby while not going

overboard. Now the definition of " practical " and " overboard " are

probably different for a CF family (including you) than a non-CF

family. Some measures we take can be inconvenient, time-consuming,

and tiresome and seem impractical. It may even hurt somebody's

feelings now and then. It's basically an increased level of

awareness regarding infection control. What I want to do is arm you

with some information so you don't feel apprehensive around Abby or

wonder if you are doing the right thing for her sake.

First I want to tell you what this does NOT mean. This does not mean

that everyone has to be paranoid. This is very critical and I don't

mean for your sake only. I've already been through that and it isn't

healthy for anyone, especially Abby. In fact that is one reason for

this letter because I don't want anyone to be afraid to touch Abby.

I want her to get as many hugs and as much love as you have shown my

other two girls. Her happiness is as important to us as her health.

She is a part of this family. She will run and play and get dirty

with the other kids. We will do everything in our power to make sure

she is treated the same as the others. In some cases she won't be

and like all of us, she'll have to learn to live with it.

What this DOES mean is that we all must pull together in the effort

to protect Abby all the time but ESPECIALLY this time of year. We

have to be on the lookout for anyone with a cough or runny nose and

keep them away from Abby and her away from anything they have

touched. Especially kids. The way this stuff spreads is by any

secretions from eyes, nose or mouth and kids usually do a good job of

spreading it everywhere. Another way to help in this effort is to

get in the habit of washing hands a lot. More than is normal. This

is a proven way to reduce spreading of infection. If you can't wash

them use the antibacterial gel. Also, sick or not we should spare

her the kisses around her mouth and avoid coughing on her or close to

her. If you have been sick but feel like you are well enough to

attend whatever the event is just let us know ahead of time. No big

deal about being in the same room as long as there is no spray

flying. Any adult that is paying attention can contain their

coughing until appropriate and then wash their hands afterward. The

CF Foundation encourages families of CF'rs to learn to cough under

the arm since the hands are so bad about spreading germs.

If your child has any symptoms please take full responsibility of

keeping them away from Abby. If you need to have them at the event

then always tell Kathy or me so we can decide if we want to bring

Abby. Just take into account the situation and determine if there

will be a lot of chances for your child to pass it to Abby. Please

don't put the entire burden on us.

Basically these are just intelligent infection control measures that

everybody - CF or not - should practice anyway.

This also means that there is the potential for someone's feelings to

get hurt. If we are open and frank with each other this can be

avoided, though. As much as Kathy and I love our family and hate to

offend, we agreed, however that we would put Abby's health first. We

both feel like we have learned enough to understand what measures we

need to take to protect Abby and we ask for your support. There may

be some measure of discomfort or nervousness about it at first but we

will all get used to it in time. It will soon be just another part

of what our family does.

This is only one tiny aspect of how this disease has been difficult

for us. We ask that you take on this responsibility for Abby's sake

and I thank each one of you in advance for being understanding and

supportive.

If you ever want to learn more about CF or infection control visit

the CF Foundation website at cff.org

Thank you and we look forward to seeing you at Christmas.

Love,

Joe

December 21, 2003

Great letter. I have considered doing this myself, but am not sure

what to say. I may take the liberty of plagarizing you.

I think some family and friends really are not sure what is the

correct thing to do, so they do nothing. When they do not ask, we

feel pushy bringing up the subject of clean hands.

Sara - mommy of Zach 22 months

> Val,

> I pasted below a copy of the letter I emailed to my family. It

is a

> very touchy subject and one that I had to address or I was going

to

> go insane. It's long but I couldn't seem to make it shorter and

have

> the same effect.

>

> Joe

>

> Dear Family,

>

> I'm writing this letter in hopes of diffusing any present or

future

> anxiety for the family regarding Abby's CF and protecting her from

> illness.

>

> I hope that everyone will take an interest in and learn about CF

only

> because of your love for Abby and your concern for her future.

This

> letter isn't intended to overload you with technical CF talk but

to

> explain why CF keeps us on alert during the cold season.

>

> Abby's immune system is just as capable of defending her from

> respiratory illnesses as yours or mine. In the event she does

catch

> one however it, understandably, causes Kathy and me a lot of

worry.

> It could be a lot more than just an inconvenience for us. The

reason

> for this is that Abby's mucous is so much thicker and harder to

clear

> than ours is. If there is enough congestion associated with the

> virus or whatever and it gets in her chest - which, as you know,

is

> very common - it could very easily land her in the hospital. She

> would need to be hospitalized if we could not clear the mucous

with

> extra CPT her lungs getting overwhelmed with the mucous and her

> airways getting clogged up.

>

> When this happens it causes two problems - one potentially

dangerous

> short-term and the other for certain trouble for her long-term:

The

> short-term one is that she wouldn't be getting enough oxygen in

her

> blood and would have to be on O2 support. The long-term and main

one

> is that the overproduction of mucous stopping up small

> airway " pockets " in her lungs breeds bacterial infection. This

> infection causes inflammation, which causes scar tissue and loss

of

> lung function. This is called a CF exacerbation. That's what she

> had in January when she was diagnosed. It may not have occurred

if

> we'd known she had CF and were giving CPT.

>

> Just because Abby gets a cold doesn't mean she'll end up in the

> hospital. Twice since she's been home she's had nasty chest colds

> and we were able to literally " beat it out of her " .

>

> Anyone that knew me before Abby's diagnosis knows that I was

always

> a " germ freak " . Who knows? God may have thought about this when

he

> picked me to be Abby's Dad! BUT I have really had to get a grip

on

> this since CF entered our lives. The doctors warned us that many

> fall into the trap of being over protective and drive themselves

(and

> their kids) nuts. I didn't really understand why until I began

> reading and learning about CF. I learned all about the bacteria

that

> can grow in CF'rs lungs, the damage they can do and HOW THEY CAN

> ACQUIRE THEM (LOL), which, yes, is enough to put any Dad on Red

Alert

> and especially me.

>

> Over the last year I have gotten a lot better. I realize Abby is

> going to get colds at times and she's also going to get bacteria

in

> her lungs as all CF'rs do. I can't prevent all of it no matter

what

> I do. However, we can prevent a lot of it. I have learned that

we

> MUST take all practical measures to protect Abby while not going

> overboard. Now the definition of " practical " and " overboard " are

> probably different for a CF family (including you) than a non-CF

> family. Some measures we take can be inconvenient, time-

consuming,

> and tiresome and seem impractical. It may even hurt somebody's

> feelings now and then. It's basically an increased level of

> awareness regarding infection control. What I want to do is arm

you

> with some information so you don't feel apprehensive around Abby

or

> wonder if you are doing the right thing for her sake.

>

> First I want to tell you what this does NOT mean. This does not

mean

> that everyone has to be paranoid. This is very critical and I

don't

> mean for your sake only. I've already been through that and it

isn't

> healthy for anyone, especially Abby. In fact that is one reason

for

> this letter because I don't want anyone to be afraid to touch

Abby.

> I want her to get as many hugs and as much love as you have shown

my

> other two girls. Her happiness is as important to us as her

health.

> She is a part of this family. She will run and play and get dirty

> with the other kids. We will do everything in our power to make

sure

> she is treated the same as the others. In some cases she won't be

> and like all of us, she'll have to learn to live with it.

>

> What this DOES mean is that we all must pull together in the

effort

> to protect Abby all the time but ESPECIALLY this time of year. We

> have to be on the lookout for anyone with a cough or runny nose

and

> keep them away from Abby and her away from anything they have

> touched. Especially kids. The way this stuff spreads is by any

> secretions from eyes, nose or mouth and kids usually do a good job

of

> spreading it everywhere. Another way to help in this effort is to

> get in the habit of washing hands a lot. More than is normal.

This

> is a proven way to reduce spreading of infection. If you can't

wash

> them use the antibacterial gel. Also, sick or not we should spare

> her the kisses around her mouth and avoid coughing on her or close

to

> her. If you have been sick but feel like you are well enough to

> attend whatever the event is just let us know ahead of time. No

big

> deal about being in the same room as long as there is no spray

> flying. Any adult that is paying attention can contain their

> coughing until appropriate and then wash their hands afterward.

The

> CF Foundation encourages families of CF'rs to learn to cough under

> the arm since the hands are so bad about spreading germs.

>

> If your child has any symptoms please take full responsibility of

> keeping them away from Abby. If you need to have them at the

event

> then always tell Kathy or me so we can decide if we want to bring

> Abby. Just take into account the situation and determine if there

> will be a lot of chances for your child to pass it to Abby.

Please

> don't put the entire burden on us.

>

> Basically these are just intelligent infection control measures

that

> everybody - CF or not - should practice anyway.

>

> This also means that there is the potential for someone's feelings

to

> get hurt. If we are open and frank with each other this can be

> avoided, though. As much as Kathy and I love our family and hate

to

> offend, we agreed, however that we would put Abby's health first.

We

> both feel like we have learned enough to understand what measures

we

> need to take to protect Abby and we ask for your support. There

may

> be some measure of discomfort or nervousness about it at first but

we

> will all get used to it in time. It will soon be just another

part

> of what our family does.

>

> This is only one tiny aspect of how this disease has been

difficult

> for us. We ask that you take on this responsibility for Abby's

sake

> and I thank each one of you in advance for being understanding and

> supportive.

>

> If you ever want to learn more about CF or infection control visit

> the CF Foundation website at cff.org

>

> Thank you and we look forward to seeing you at Christmas.

>

> Love,

>

> Joe

December 21, 2003

YOUR VERY GOOD AT YOUR EXPLANATIONS, (I HAVE TOLD YOU THAT BEFORE:) & i

WOULD HOPE & PRAY ALL FOLKS HAVE FAMILIES LIKE YOURS THAT THEY CAN SEND OR

TELL THEM THIS AS YOU CID.