CF/MISC W/GRANDMOMBEV-JUNE 2003

June 12, 2003

HOWDEEEEEEEEEEEE EVERYONE,

I HOPE ALL ARE DOING WELL & LOOKING FORWARD TO A NICE SUMMER (IN USA) &

WHATEVER YOUR SEASON IS ELSEWHERE <<

I HAVE RETURNED FROM A LOVELY (?0 WEEK AT THE BEACH WITH A GREAT MANY

OF MY FAMILY.it IS SOMETHING WE DO EACH YEAR & HAVE FOR OVER 30 YEARS.

iT GETS HARDER AS THE KIDS(10 OF THEM) GET OLDER .GO TO

WORK-SCHOOL-BOYFRIENDS-ACTIVITIES-CAMPS , ETC ON SAME DATE SOOOOOOO,

THEY COME DIFFERENT DAYS AS THEY CAN. WE GENERALLY HAVE AT LEAST 10

THERE SAT ALL times.it IS GREAT!!

I HOPE YOU ARE ARE HAVING NICE DAYS TOO. I HAD TO COME BACK TO WORK

FOR REST TIME :):)HEHE-

NOW TO GET IN THE TRAVEL LINES AS THEIR ARE MANY ED DATES &

CONFERENCES TO ATTEND/EXHIBIT , ETC.

I SURE DO HOPE I GET TO SEE MANY OF YOU IN JULY AT THE REALLY GOOD

CFRI CONF. IN REDWOOD HILLS, CA (JUST OUT OF SAN FRANCISCO.DATES ARE

JULY 25-28TH. YOU CAN GET ALL INFO ON THEIR WEB SITE www.cfri.org

I have written to many as their post arrived so I hope you don't feel

I missed you / & /or forgot you. EACH one of you is important & very

special to me & all of us.!!

WELCOME TO ALL THE NEWBEE.AND OF COURSE A GRAND WELCOME TO THOSE OF YOU

RETURNING FROM YOUR BREAKS.YES , FOLKS SOME DO NEED OR WANT BREAKS FROM

LISTS AS THEY ARE ALL BUSY FOLKS. WE LOVE IT WHEN YOU ALL RETURN & JOIN

IN YOUR GREAT SHARING & SUPPORT THAT IS SO IMPORTANT IN FIGHTING THIS

DREADED CF-THANKS ..........

PAULA...I WAS HAPPY TO SEE SOMEONE HAD SEEN THE TWIN CLOWNS (PEE &

DAGWOOD) FROM OVER IN AUSTRALIA. I had read about them once before .I

also know of a great clown here in the states too.HOLLY TRINGLE . She is

in Colorado. I even have a calendar that she & a partner had been

captured on film. I think it is so like those with CF to share & try to

help others smile!! God Bless them all------it is so very nice to hear

about them I am going to put the story in my next newsletter INFORMER!!

LESLIE C.. It was very nice to hear from you & your interest in the

pulmozyme for your wee one. Many are using it under the age of 6. as you

did hear from many. It just wasn't used under that age in the original

trials. It really does work. After awhile with the older folks, it

doesn't seem to get much out-:) BUT-that is because it is constantly

clearing & letting it out instead of building up .my granddaughter is 19

& has been using it for some time. She only does pulmo & her enzymes (

those just on occasion as well .-not all foods.keep us " posted " on your

Drew & Dane(such pretty names:)

WENDI M.. Glad you joined us & it is nice to hear that Peyton isn't on

too many meds best wishes for that to continue.I think you should ask

your doc about pulmo .It never hurts to ask about things you think might

help. they will tell you for sure:)

VANESSA M.YES!! where have you been . shame on you .We want to keep up

on sweet Mateo!! I am so glad you have been able to take care of some

" stuff " with him.

The feeding clinic might help , BUT I bet time will also. I hope someone

wrote in about the red coloring around his eyes. if you don't , call

your clinic & ask .just to be sure it isn't a reaction to something .I

would love to see that 'bald " haircut. it sure wont get any lice or

dandruff:) have a fun week ahead & don't stay away so long

Hi Jackie S. I hope your on line now. How are all the folks doing there

in that COLD (20)weather in Ireland ? I would love to meet you if you

get over here in this warm weather :) You would love it I am sure. You

will be hearing from Val soon-if you haven't already.She is going to

also be on TV program & having gotten a for SURE date. -It is about the

GSH too.

CATHY G,, I know your getting ready for that sinus surgery on July3rd

..it will go fine.

You'll have a " bang-up " time:):)Then your wedding anniversary -yikes-23

years!!! will also be a great one since , like you said, it is a holiday

& he will be able to be home with you then. There are many years ahead

for that dream trip too:) I will hold you in my prayers.

MONIQUE. I sure hope someone could find the articles on smoking effect

on those with CF & EVERYONE that have been repeated in the lists. Did

you get some from the archives-or someone sent to you. I never saw any

cross over lists? I hope so , if not then, maybe now. It would really

help convince the family-maybe:) hopefully!!

LENORA. I did IT!!!-I wrote my congressman on the CF AWARENESS DAY date

for this year OCTOBER 12-18th I pray all others did so too.How many did

that you know of. !1

EVERYONE SHOULD IF THEY HAVEN'T ALREADY!!!.JUST GET YOUR STATE TO VOTE

FOR THE BILL. >>>>SENATE RESOLUTION 98<<<<<< god Bless you for all

you've done on this !!

VICKY C.. Hi there.your another gal with 3 children with CF .I bet you

thought you were the only one. We have several with 3. They are mostly

doing very well. You gals_mommies are super gals!1 We admire you so

much.You said you went to a great center -Which one?? I am very happy

for you on that point . It makes your stress (what stress-right?) a bit

less, when you have confidence with your clinic & its staff. please let

us hear from you & that great brood of yours .

SUSAN. mom to Jasen wcf/tx..You have had what I remember as a really

tough time.

that time when they are all " grown up " .We feel like we are not

needed.BUT-we are, believe me, I can tell you that is true. my kids ages

are. 50, 49.46, 45, 43.Now how does that grab you. My kids are always

with me or near me. we still even vacation together .YET .they also do

their own thing & I keep the grandkids-now they are leaving their nests

too :) It is a very healthy cycle. You will love it !! & enjoy

watching them do as you taught them.and I am sure it was good. Bless

you .keep us posted on how it hoes.OH--I am so glad that party went well

..I knew you would pull it off just great.-you'll have to take trip to

FL. I keep my light on always here in Orlando, FL:)

KERRY V..I do hope by now your sons DX has come to you & his treatments

will be started to help him whatever the DX is . Please let us know as

you find out &

remember,-- WE ARE HERE for you & each other always.. that salty taste

is one of the very prominent signs of CF .BUT, the tests will tell you

..I hold you in my prayers.

BECKY S.. you sure are a busy bee on the Internet, Thanks for all the

info you send us. I sure am praying you hear soon about your TX, etc.

the retreat you have set up for folks with CF sounds like a great deal

of fun. I hope you all have a SUPER time. But -be careful!!

JEN N.. It was very nice to see you back on line. work has really kept

you busy too, huh? That full time Nursing job could get to be allot for

you.. I have been hearing from folks with CF - more & more how CF has

helped them try harder , enjoy each day, understand others & be so

compassionate for other people. I am sure you are a wonderful

nurse-those patients are lucky to have you. BUT-be careful of what you

can get from them.infections, etc. We want you with us too!! have a

wonderful summer!!

and WELCOME BACK!

NANCY..Don't you dare pass out on the floor. YES, I can see

graduating & all that wonderful stuff .She did it with your help .

pulling-pushing-standing by - & always ready to help her-Whether she

liked it or not--YOU ALL DID IT !! yeah... now sit back 7 enjoy:):)You

are right when you say, you have one you can cuddle up to yet :) so

cuddle mommy....start now.....BUT, don't forget to give that " BIG GAL "

a hug or 2 every once in a while too :)Enjoy the weather while you

can.I was out in La & southern CA last month for 10 days of conf's & Ed

days & it was lovely then:) Are

you coming to CFRI conf (San Francisco)?in July.

DANA, this is a follow-up on DOUG.I do hope he is doing better now &

therefore you will also be doing better. I hold you both in my prayers .

BONNIE S.. I am hoping this post gets you all when everyone is doing

better .I did hold you all, especially your mom in my prayers as you had

asked. I including & too. You were first on my list as

you are the caregiver & shoulder they all lean on. take care of you

too.God Bless you all.

AGNES.. I am hoping all is calm on the SARS front & the MRSA side too.

You all have had a bit of so much stuff up in CN this past years or

so.Gollee.. What is doing this summer.? Did the Spanish all get

worked out? I do hope so , he is such a great kid. but then look at his

Mom

RISA G.. thanks for your interest in so much & the fate /care of those

with CF & TX's. It takes all together to get a job done & you are sure a

hard worker too.!! thanks

STAR() Nice to hear from you .. I hope you found all you needed.

that little family of yours that grew & grew. how so wonderful for each

of you. Blessing heading for you with my prayers .

FRED W. thanks for you recent post. It sure did make us all appreciate

our spouses /friends & family .happy anniversary again. to you folks.

have a great new year ahead.

PATI R.. You are so good at sending m such informative posts. I am

looking forward to seeing you & your staff (whoever gets to come:) at

the conference in Oct. It will make my third trip to CA this year . nice

folks tho & super information at each place we have & will have

been!!Take care.........

n R. it has been another great year with lots of activities. The

program will be one of the best at CFRI .maybe you will try to come on

a day or so. Jill is & many others on list .You will be among a great

many friends. -that is -if you feel up to it.Different place & a new

director, etc.....Think about it .

BRENDA M. thanks for your great support & referrals to us. your a loyal

friend .So much info on Cf that you pass along too. hi to & Nicky

too .

LISA T. take care of yourself & have a wonderful week......I know your

having a great time with all that " family " :)

CLOYCE . Now you stop working so very hard & such hours at work. You

cant get

sick now !!! that is what you tell TARA:)

TARA.BTW.You better do as your mommie says.and , & me, & the TX

coor. & the docs, -- & just about all of us. WE LOVE YA!!!

SUSAN -Mom to many.YES MOM of Many. You drive carefully & have a

wonderful trip again this year. What an example you are to the world.

GOD BLESS EACH OF YOU AS YOU GO DAY BY DAY .

I bet I have gone on & on here. I will try again soon.

Love to all . Bless each of you .Good health to all ~

LOVE & HUGS< >>>>>GRANDMOMBEV

_____

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CF/MISC W/GRANDMOMBEV-JUNE 2003

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