Bev

[Guest guest]

I glad to be of some wee help.!!

The conference was awesome. spoke with people separately . Dr

Bishop did the presentation. There were several Researchers there ,

including Quintan .who himself has CF. the TV had his story as well

as many papers. He is a major speaker at many CFF functions. also a

friend of mine. Dr Jeff Wine & others from Sanford U. group too. He has

a daughter with CF as well. .Many clinicians were there & many questions

asked & answered. It was very informative. Dr R.Moss did a grand report

on Gene therapy. Dr Saiman spoke on antibiotic treatments in lung

disease . & so much more. I don't have the program in front of me .BUT

IT WAS Soooooooo good. They had a workshop on SCHOOL requirements &

procedures by a nurse from the Unified School District Nursing division

as well as a program manager from Lucille Packard Hospital in Palo

Alto. Really good STUFF!!

It gets better each year. I sure hope you can be there too. Everyone

got an awareness flyer too:)

LOVE & HUGS, GRDMBEV

I am having dinner with Jen Uphoff(of jen & ron :) & her work gang

tonight .They

Are here for a work retreat & conference.

from PA

>

>

>I tried sending the newsletter to , but it got returned. , you

>can find the newsletter on the awareness site:

><http://www.cfawareness.org>http://www.cfawareness.org

>Go to " AWARENESS WEEK NEWS "

>I think I have the address right, so perhaps you cannot receive

>attachments or maybe your box was full? Lenora

>

>>I'd like a copy of the newsletter

>> from PA

>>

>>

>>

[Guest guest]

GREAT!! I know they loved the cup cakes too. hey, that sounds like a fun

place to go . Maybe we all should go too (hehe) & take some cup

cakes -hehe. I am so proud of her too....... & you . It isn't too hard to be

a sit at home waiting mommy:):) wait until she is in her teens & she is

out with a boy .......................YEAHhhhhhhhhhh

You will open a bakery up then.hahahehe

LOVE & HUGS, grandmomBEV

DISCO QUEEN

EILISH IS GOING TO HER FIRST DISCO TONIGHT. A FRIEND FROM SCHOOL HAS

INVITED HER TO A GIRL GUIDES DISCO. SHE RACED HOME AFTER SCHOOL TO

CHANGE INTO 'COOL' CLOTHES. I AM NOT GOING SO AS USUAL AM A BIT NERVOUS

THAT SHE WONT BE LOOKED AFTER PROPERLY (NO ONE DOES IT LIKE MUM). SO

FOR THAT HOUR I WORRY ABOUT HER THEN SHE'LL TODDLE IN FINE.

GEE THEY GROW UP SO QUICK.

JULIE (AUSTRALIA)

[Guest guest]

Bev,

According to she is going into a nunnery when she is 13 and coming

out at 25!!!! She told me tonight she had three boyfriend, Luke, Vince

and another. She also said 'I did love Matt, but I've given him up! " .

Whenever she doesn't;t want to do something its always, 'I've give it

up " . She gave up knitting because 'I' knocked her elbow. Girls!!!

DISCO QUEEN

EILISH IS GOING TO HER FIRST DISCO TONIGHT. A FRIEND FROM SCHOOL HAS

INVITED HER TO A GIRL GUIDES DISCO. SHE RACED HOME AFTER SCHOOL TO

CHANGE INTO 'COOL' CLOTHES. I AM NOT GOING SO AS USUAL AM A BIT NERVOUS

THAT SHE WONT BE LOOKED AFTER PROPERLY (NO ONE DOES IT LIKE MUM). SO

FOR THAT HOUR I WORRY ABOUT HER THEN SHE'LL TODDLE IN FINE.

GEE THEY GROW UP SO QUICK.

JULIE (AUSTRALIA)

[Guest guest]

You have such creative & talented kiddo's . Who would have thought of

that. Bless her heart . She is one smart cookie....specking of cookies,

are you baking again:):)?

LOVE & HUGS, grandmomBEV

DISCO QUEEN

EILISH IS GOING TO HER FIRST DISCO TONIGHT. A FRIEND FROM SCHOOL HAS

INVITED HER TO A GIRL GUIDES DISCO. SHE RACED HOME AFTER SCHOOL TO

CHANGE INTO 'COOL' CLOTHES. I AM NOT GOING SO AS USUAL AM A BIT NERVOUS

THAT SHE WONT BE LOOKED AFTER PROPERLY (NO ONE DOES IT LIKE MUM). SO

FOR THAT HOUR I WORRY ABOUT HER THEN SHE'LL TODDLE IN FINE.

GEE THEY GROW UP SO QUICK.

JULIE (AUSTRALIA)

[Guest guest]

YES,-- I emailed you directly. My email is bevd@...

LOVE & HUGS,

grdmomBEV

Bev

hi Bev,

I wanted to ask if you have any little info books for teachers. The teacher

that was supposed to have, who I had already briefed about CF, has

left the school and a new instructor is coming in. Now I am all worried

about starting school again since I'm not sure if it will be the same

teacher's aid either! Her Meet the new teacher night is Friday Sept 5 and

I'd like to give her something about CF then. We won't be going to clinic

until has already started school, so I can't get anything from them

quickly (their mail room moves very slow) Please e-mail me privately at

Drea@... so I can send you my address if you have anything. Thank

you!

[Guest guest]

Bev,

Were going to Queensland. They have all the 'worlds' there I.e Dream,

Movie and Sea. Were also hoping to get up to Steve Irwins Zoo

(crocodile Hunter) but only if he is there. Were having my sisters baby

shower tonight, so I have been cooking all day and re-arranging

everything as we had all the carpets steam cleaned yesterday and have 5

bedrooms full of stuff sitting in the family room to be put back, Its

nearly done though.

Love

Re: " Mum my lungs hurt "

Hi

The viruses are shocking atm aren't they! I had Nicky home all last

week with a respiratory virus that set off her asthma, but she is

doing ok now. I am so glad (fingers crossed) the 'Footballers

virus' hasn't struck us yet, it's going around the High School.

We didn't go to the Gawler show but are hoping to go to the Adelaide

one on Sunday. Our plans are to stay in Adelaide overnight then go

to CF clinic appt on Monday. Lucky Greg has the day off Monday

This year Kristy has been the healthiest in the family. This is

only the second course of antibiotics this year, a miracle after

previous years. She said the pain in her lungs is much less today,

so I am hoping whatever it was is passing and the antibiotics nip

anything else brewing. Will feel much better after Clinic on

Monday. It was disappointing that the normal GP we saw was away on

Wednesday and so was the Dr we use as a backup.....The Dr we did see

was extremely nice but after our past experiences I am very

distrusting and get rather tired of having to explain the history of

why she was diagnosed so late, still I guess perhaps it may help

another patient one day!

> Barbara,

>

> Aren't the viruses going around wonderful at the moment. We

actually

> had stuff faxed to work from the health commission about various

viruses

> in our state. Did you go to the Gawler Show? Are you going to the

> Royal Show? We are hoping to on Wednesday, depending on the

weather.

>

> , your neighbour!!!!

[Guest guest]

Dear , That is really a wonderful sounding wish..I am so glad. I think

if we haven't traveled to another country we forget that they have many of

the same things. I have seen so many wee ones with such joy in their faces &

their eyes just bug out with thrills that I want all to have that. It is so

nice to learn about places as you described that are there too. The

Crocodile attraction sounds like one I would love too. GREAT. DO have

soooooo much fun. & a safe time as well.

You sound like your really having a great big party there. I know it will

be a tremendous success. My , you have plenty of places to put things for a

big job as the carpets being cleaned. WOW..........5 bedrooms should hold it

all. Your amazing

Whatever your fixing (cooking) I KNOW will be wonderful . You will have to

fill us all in after. sounds like lots of fun & games....ohhh, be sure & let

us know which games you all played too :) gosh, I am getting excited

about this too. hehe. nice news the kids are doing well as is school . Do

update us on that as you get thru this very busy weekend for you all .. take

care-Best wishes for a delightful party ....

LOVE & HUGS, grandmomBEV

Re: " Mum my lungs hurt "

Hi

The viruses are shocking atm aren't they! I had Nicky home all last

week with a respiratory virus that set off her asthma, but she is

doing ok now. I am so glad (fingers crossed) the 'Footballers

virus' hasn't struck us yet, it's going around the High School.

We didn't go to the Gawler show but are hoping to go to the Adelaide

one on Sunday. Our plans are to stay in Adelaide overnight then go

to CF clinic appt on Monday. Lucky Greg has the day off Monday

This year Kristy has been the healthiest in the family. This is

only the second course of antibiotics this year, a miracle after

previous years. She said the pain in her lungs is much less today,

so I am hoping whatever it was is passing and the antibiotics nip

anything else brewing. Will feel much better after Clinic on

Monday. It was disappointing that the normal GP we saw was away on

Wednesday and so was the Dr we use as a backup.....The Dr we did see

was extremely nice but after our past experiences I am very

distrusting and get rather tired of having to explain the history of

why she was diagnosed so late, still I guess perhaps it may help

another patient one day!

> Barbara,

>

> Aren't the viruses going around wonderful at the moment. We

actually

> had stuff faxed to work from the health commission about various

viruses

> in our state. Did you go to the Gawler Show? Are you going to the

> Royal Show? We are hoping to on Wednesday, depending on the

weather.

>

> , your neighbour!!!!

[Guest guest]

Bev,

We had a good time at the baby shower although only 2 of the 15 girls

invited turned up!!! Add that two the four family and we had 6, 7

including our prize giver Eilish. My sister was very disappointed. You

could see the tears just below the surface. What happened was the one

lady who was meeting the others just outside our town and they would all

follow her, ended up in hsp. and therefore all the others would have

waited and no-one showed up for them.. We didn't find this out till

after the fact as the lady who was in hsp. husband was supposed to call

in the afternoon and he forgot until about 9pm. But as they say the

show must go on. So Eilish and I still made sure we played games and

gave out gifts. The odds of winning a prize was good LoL! Then all

the partners came back early(I secretly rang to tell him to bring

everyone back to eat all the food) and this also added to the fun of the

night. So I think it turned out fine in the end.

Eilish enjoyed the other two parties she attended also. took Liam

to see car racing today, so while Eilish was at a party my mum and I

went out for lunch.

Were hoping that's the last of the b/day parties for a few weeks at

least.

I hope you also had a lovely weekend.

Love

Re: " Mum my lungs hurt "

Hi

The viruses are shocking atm aren't they! I had Nicky home all last

week with a respiratory virus that set off her asthma, but she is

doing ok now. I am so glad (fingers crossed) the 'Footballers

virus' hasn't struck us yet, it's going around the High School.

We didn't go to the Gawler show but are hoping to go to the Adelaide

one on Sunday. Our plans are to stay in Adelaide overnight then go

to CF clinic appt on Monday. Lucky Greg has the day off Monday

This year Kristy has been the healthiest in the family. This is

only the second course of antibiotics this year, a miracle after

previous years. She said the pain in her lungs is much less today,

so I am hoping whatever it was is passing and the antibiotics nip

anything else brewing. Will feel much better after Clinic on

Monday. It was disappointing that the normal GP we saw was away on

Wednesday and so was the Dr we use as a backup.....The Dr we did see

was extremely nice but after our past experiences I am very

distrusting and get rather tired of having to explain the history of

why she was diagnosed so late, still I guess perhaps it may help

another patient one day!

> Barbara,

>

> Aren't the viruses going around wonderful at the moment. We

actually

> had stuff faxed to work from the health commission about various

viruses

> in our state. Did you go to the Gawler Show? Are you going to the

> Royal Show? We are hoping to on Wednesday, depending on the

weather.

>

> , your neighbour!!!!

[Guest guest]

Dear ,

What a sad (at first ) thing to happen. I do know it worked out really well

& you just had a little different style party . BUT , as you said, they all

had fun. Hopefully, those who missed their lead driver ,will send/give her

the presents as well on their time(next time add directions on the invite.

We have to even draw maps here. It just gets so confusing sometimes. ) . I

am sure the " PARTY GIVERS " will also receive their praise for such a

delightful time . As you said, they sure had a better chance at the prizes

too :)ELISH was the toast of the party as prize giver. I know she must

have loved that. hehe.

Food --I am sure was fabulous as well.........Sometimes here in

states(maybe elsewhere too ) they have couples attend., not just the gals.

It does turn it into a real wild party :)

ANYWAy--Take a well deserved break now & have a peaceful " rest of the

weekend

LOVE & HUGS,

grandmomBEV

Re: " Mum my lungs hurt "

Hi

The viruses are shocking atm aren't they! I had Nicky home all last

week with a respiratory virus that set off her asthma, but she is

doing ok now. I am so glad (fingers crossed) the 'Footballers

virus' hasn't struck us yet, it's going around the High School.

We didn't go to the Gawler show but are hoping to go to the Adelaide

one on Sunday. Our plans are to stay in Adelaide overnight then go

to CF clinic appt on Monday. Lucky Greg has the day off Monday

This year Kristy has been the healthiest in the family. This is

only the second course of antibiotics this year, a miracle after

previous years. She said the pain in her lungs is much less today,

so I am hoping whatever it was is passing and the antibiotics nip

anything else brewing. Will feel much better after Clinic on

Monday. It was disappointing that the normal GP we saw was away on

Wednesday and so was the Dr we use as a backup.....The Dr we did see

was extremely nice but after our past experiences I am very

distrusting and get rather tired of having to explain the history of

why she was diagnosed so late, still I guess perhaps it may help

another patient one day!

> Barbara,

>

> Aren't the viruses going around wonderful at the moment. We

actually

> had stuff faxed to work from the health commission about various

viruses

> in our state. Did you go to the Gawler Show? Are you going to the

> Royal Show? We are hoping to on Wednesday, depending on the

weather.

>

> , your neighbour!!!!

[Guest guest]

Bev,

We did put a map on the invites, but apparently my sister sent them all

the one person who was supposed to give them out. She said she never

got them, so it then became a word of mouth thing.

Love

Re: " Mum my lungs hurt "

Hi

The viruses are shocking atm aren't they! I had Nicky home all last

week with a respiratory virus that set off her asthma, but she is

doing ok now. I am so glad (fingers crossed) the 'Footballers

virus' hasn't struck us yet, it's going around the High School.

We didn't go to the Gawler show but are hoping to go to the Adelaide

one on Sunday. Our plans are to stay in Adelaide overnight then go

to CF clinic appt on Monday. Lucky Greg has the day off Monday

This year Kristy has been the healthiest in the family. This is

only the second course of antibiotics this year, a miracle after

previous years. She said the pain in her lungs is much less today,

so I am hoping whatever it was is passing and the antibiotics nip

anything else brewing. Will feel much better after Clinic on

Monday. It was disappointing that the normal GP we saw was away on

Wednesday and so was the Dr we use as a backup.....The Dr we did see

was extremely nice but after our past experiences I am very

distrusting and get rather tired of having to explain the history of

why she was diagnosed so late, still I guess perhaps it may help

another patient one day!

> Barbara,

>

> Aren't the viruses going around wonderful at the moment. We

actually

> had stuff faxed to work from the health commission about various

viruses

> in our state. Did you go to the Gawler Show? Are you going to the

> Royal Show? We are hoping to on Wednesday, depending on the

weather.

>

> , your neighbour!!!!

[Guest guest]

howdee GAl,

I figured you most likely did .Your so up on all . it is a shame that the

" word of mouth is so mixed up anymore.

BTW, Do you remember the other game ,lots of folks, all ages , used to play

about that. .It went .One person said a story (2 sentences) to the person

next to them (whispered) . that person turned to the person next to them ,

etc....then at the end of the seating. the last person repeated what was

said to them....It wasn't ANYTHING like the first sentence (which , by the

way, had been written down) ..It was so very funny. The sentence always was

about something or one at the parties purpose......ie. baby shower. "

and Bob think they are having a girl . 's aunt said it was because she

was carrying her baby so low..... " . that doesn't seem like it could be

screwed up ......BUT . try it even with =in your family . We used to do it

allot around the campfire with the kids & also at group fireside

evenings..... FUNNY!!!

I didn't mean to imply that you didn't do all the necessary steps, just an

idea. Most invitations don't have a place for that. I almost always make

mine at work , so have the stuff there . Didn't used to have all that

/computers, etc.

I bet the kids are getting so UP , about the wish trip :)

Have a great day off today too

LOVE & HUGS<

GRANDMOMBEV

Re: " Mum my lungs hurt "

Hi

The viruses are shocking atm aren't they! I had Nicky home all last

week with a respiratory virus that set off her asthma, but she is

doing ok now. I am so glad (fingers crossed) the 'Footballers

virus' hasn't struck us yet, it's going around the High School.

We didn't go to the Gawler show but are hoping to go to the Adelaide

one on Sunday. Our plans are to stay in Adelaide overnight then go

to CF clinic appt on Monday. Lucky Greg has the day off Monday

This year Kristy has been the healthiest in the family. This is

only the second course of antibiotics this year, a miracle after

previous years. She said the pain in her lungs is much less today,

so I am hoping whatever it was is passing and the antibiotics nip

anything else brewing. Will feel much better after Clinic on

Monday. It was disappointing that the normal GP we saw was away on

Wednesday and so was the Dr we use as a backup.....The Dr we did see

was extremely nice but after our past experiences I am very

distrusting and get rather tired of having to explain the history of

why she was diagnosed so late, still I guess perhaps it may help

another patient one day!

> Barbara,

>

> Aren't the viruses going around wonderful at the moment. We

actually

> had stuff faxed to work from the health commission about various

viruses

> in our state. Did you go to the Gawler Show? Are you going to the

> Royal Show? We are hoping to on Wednesday, depending on the

weather.

>

> , your neighbour!!!!

[Guest guest]

Bev,

We used to call that game Chinese Whisperers. It was funny when you

hear the final thing. Yes the kids are excited about the trip. Firstly

though tomorrow is our state show (rides etc.) so there school has a day

off for it so were going there.$$$$$$$ is going to be rolling out our

pockets. The kids have planned what show bags they will get, and so

have we, cant not get a bag.

Have to go to work now. takes the kids to school so I have free

time in the morning.

Love

Re: " Mum my lungs hurt "

Hi

The viruses are shocking atm aren't they! I had Nicky home all last

week with a respiratory virus that set off her asthma, but she is

doing ok now. I am so glad (fingers crossed) the 'Footballers

virus' hasn't struck us yet, it's going around the High School.

We didn't go to the Gawler show but are hoping to go to the Adelaide

one on Sunday. Our plans are to stay in Adelaide overnight then go

to CF clinic appt on Monday. Lucky Greg has the day off Monday

This year Kristy has been the healthiest in the family. This is

only the second course of antibiotics this year, a miracle after

previous years. She said the pain in her lungs is much less today,

so I am hoping whatever it was is passing and the antibiotics nip

anything else brewing. Will feel much better after Clinic on

Monday. It was disappointing that the normal GP we saw was away on

Wednesday and so was the Dr we use as a backup.....The Dr we did see

was extremely nice but after our past experiences I am very

distrusting and get rather tired of having to explain the history of

why she was diagnosed so late, still I guess perhaps it may help

another patient one day!

> Barbara,

>

> Aren't the viruses going around wonderful at the moment. We

actually

> had stuff faxed to work from the health commission about various

viruses

> in our state. Did you go to the Gawler Show? Are you going to the

> Royal Show? We are hoping to on Wednesday, depending on the

weather.

>

> , your neighbour!!!!

[Guest guest]

Yes, in those days they were VERY opposed to anyone else giving out

information that wasn't from them. I found that very stupid reaction &

didn't buy into it. they even sent, several folks at different times

including, Rick Mattingly, a very nice young man (then in a much lesser

position) down to try to convince me to turn it over to them for

approval,--- but no lunch or meetings with myself & another support group CF

dad was going to change our minds. they no longer do that . I believe the

folks in charge with a one exception, are really VERy dedicated to us & our

families. We do NEED all the research .I of course feel we need all other

services as well. .WITH /FOR those already here with CF & their families. In

all fairness to some in charge there ----they are trying to make these

changes. I am VERY pleased with that ! ! they even acknowledge the

adults,etc.now.. Just my opinion. & I am too old to change that. I

wouldn't even if I were younger. :)

(BTW.I helped many others start those that are currently being enjoyed .)

So , ENJOY!!!......... & EDUCATE........Spread the word.

AWARENESS week next month , & every month.....

LOVE & HUGS,

GrandmomBEV

bev

" For many years the ONLY one too. The CFF banned them... "

WHAT DO YOU MEAN THEY BANNED YOUR NEWS LETTER!?! WERE/ARE THEY CRAZY IN THE

HEAD?

OK...I'll quit yelling now. It's not like you put wacky alternative

treatments in there. My estimation of them just dove a notch.

Dawn mom of 4, 7 and under, the youngest wcf