CF/MISC W/ GRANDMOMBEV..............................HOWDEEEEEEEEE

[Guest guest]

HOWDEEEEEE TO EVERYONE!!

Well howdee to all .I do hope your week has been better .It has rained

here each afternoon so I am ready for that to stop.they tell me we need

it to bring the lakes up to normal , BUT , I still don't want it

anymore.I am so spoiled about that too. I also think of those folks who

come on trips/vacations, etc & want to be out ALL day. It is a good

thing that most attractions, etc have inside diversions as well. That

helps .it is also the time many parents take there kiddo's back to

hotels to rest/naps &.treatments if needed.So I guess there is a reason

for everything.You all still come down.its lovely:):)

NOW. I do hope to see many of you all here for the TX games. I will be

stationed in the exhibit hall for 2 days of the event so hope you will

at least come by . I am planning on attending the gathering after the

desert party too. we did have such a really nice time at the last games

& this seems to heading even better!! Remember , if you run out or loose

any of your items for CF /TX or anything, call me. Also have docs(I am

also VERY certain the committee has planned for some to be there as

well.)names & ##. My number is 1- & cell # 1-

& I will also be at the games & be there in hall .

SEE SOME OF YOU SOON:):)

ELIZABETH DAVIS... I do hope you have gotten hold of Camp Funshine & the

information you needed.It is such a wonderful experience for so many. I

do know that the cross infection crusade has helped some really stick

to the rules. I am sorry that some kiddo's miss it . But all have to do

what they feel is best.Good luck...............(thanks for this last

update -glad he is ok , sorry about the need for the funeral he

attended. Prayers for all families involved......

CAROLINE R.. thanks so much for helping to get the info about that camp

also .I hadn't heard about the shuttle they have from the airport. that

is soooo neat!!

TRACY I am still so impressed with your goal paper for school that you

wrote. I know you will go far & we are very proud of you . I hold you in

my prayers to

succeed in all you strive for. your dedication is tremendous.:)

MELISSA K.. How did the flyers work .I hope all went well for you. it

was such a nice idea & we all know how very important AWARENESS is for

CF families & how it helps us all the more others know about the

disease. bless you & yours too.

LAURA T.. I really am still stressed & in shock about your theft by your

moving company. I haven't heard any more that the first horrific info

in your last post. I hope the police have gotten them & most important

items of yours & all your " things " . gosh, I really cant imagine this

happening. I know they say & have filmed the baggage folks going thru

luggage too at airports. I am glad they are considering having see thru

walls in those departments soon. They should be able to be seen as they

work & move that stuff. they don't have to have it behind closed

doors.PLEASE know I am praying for your safe return of all your items,

especially the personal films, pictures that can NEVER be replaced etc.

..I know the folks here on these lists also are doing whatever they

do(wishes, thoughts, vibes, ) to encourage the returns as well.

FLORIDA FOLKS..Need some help or a fun thing for your person with CF??.

call NEW HOPE for Kids...,Maitland FL.1-.ask for their info,

application. It isn't the Children's wish Fdn. it is another .They do

similar types of things too...

TINA.. & others who have said they were coming to GAMES. Thanks for your

notes,

& I will certainly look forward to seeing you soon too!!

RHONDA R. gosh, That megase sure seems to work if it is supposed to get

you an appetite. BUT, I sure hope they can find away to help with those

night sweats. They are really the pits! I guess you have had worse if

you have been thru the TX.But, as you said, You want to know if that is

the reason , and/or if something else can be done. let us all know .We

are learning from each of you all each day .Bless you!!

FLORIDA RESIDENTS -ADULTS with CF in Alachua,Miami-Dade,Orange,&

Pinellas-Pasco counties only at this time. hopefully to expand if this

is successful.They have started a new program for you who would like to

learn skills that they can join the work force in their stage of CF.

Skills that are marketable. This group will fund the schooling for this

..It is the CF Employment Outreach Program(CFEOP) There are different

contact folks & numbers for certain areas . I have them all listed in

the INFORMER that is due to be labeled (3000 of them), next week &

mailed. if anyone is interested , you can call me 1- & I

will give the list to our receptionist.There are projects trying to be

started for adults w/Cf now & we need to encourage these. Thank GOD

for the need:):)

KIM D..I am so happy you are with us on the list & I think it is great

that you have gotten DESTINEES mom to join too. Thank you & I know she

will thank you also. have a great weekend:):)I did write to her I hope

she received. I have had some hang-ups with my emails lately. I didn't

get many over the weekend & even less one day this week. BUT, hopefully

all the reasons folks suggested are true.........

WELCOME!!!

TONI V..Have you gotten the things you needed & your nebs as you wanted.

That was a surprise not having as you needed. If you have the disposable

ones , it makes it nice not to have to worry or to come up short on

supplies. Just wash ...let dry & use again. My best to you and all this

stuff .:)

DANIELLE.. How is the old CLUB treating you kiddo??? I have sent some

cards & sure hope they are joined by many others. I know they will be.

Your such a doll & have always been the one to thing of everyone else.

Take care, do be a good gal & take & do all the stuff you need to " get

outa thar " If you get feeling up to it, you can call me toll free

1- from club, cant you ?? Hope to hear .............

KIM P as usual , your stories .this one the eye problem) are really

clear & wonderful .always a SMILE too!!!, Sure you don't want to move to

FL..???

BOB Frengel..WELCOME .. You will find all the folks on all these lists

(see above) are so helpful, compassionate & plain ole FUN...We can learn

& share so very much here with folks who have " been there-done that " and

that is the true information about almost everything.It is beautiful

that your gathering info for your grandson. I am also involved from the

first due to my granddaughter ERIN. Since that time 18 years ago, I have

become grandmom-auntie-friend to many , many folks in the CF world.

DAVID T. Congrats again on your engagement. I hope you and Rowena will

be very happy. Have your folks agree with all of this? I hope so , it

makes life so much nicer. Do they know about the baby? Is there going to

be a baby? You must write back & fill me /all of us in on EVERYTHING,

Inquiring minds(?) want to know :) Love there Big Guy.MEGAN J . it

is sad you didn't get to see your dad at the end BUT, you did speak with

him .he knows that all now. Your post was so very sweet & how your

feelings about others makes us all want to be sure & speak to our family

& friends with the true feelings we have-Not go wait & wish we had-too

late.....We never know & as you pointed out .the folks on Set. 11th

didn't ever dream, I am sure of what happened..Thank you for your gentle

reminder .Love for your precious family is

quite obvious in your post. have a delightful weekend 'down under "

JEN/RON.. haven't heard much lately .I am hoping & praying that your dad

is doing VERY well.You imp.,lied in your last post that he was, Also

those wee ones as well. Give Ron a hug from me. It must be getting close

to Canada time , right?? Do have a super time.If it were close, I would

stop in :) It sounds heavenly.Love you all.

Well, the weekend is here. I do have much going on .We will be painting

some more , but some small stuff. shelves, redoing cushions, that kind

of decorator things.Of

course other stuff that has come up. I do also have a funeral to

attend Saturday .My 82 year old next door neighbor passed .He was 82 &

not really been with us for last 6 months (cancer ) so he is resting

now.

I am going to get the labels ready for the INFORMER , so Monday we can

get them on & then loaded into my car for me to take to the BULK mail

center . they should be out around mid to last of next week.

You all have a SUPER, TERRIFIC, WONDERFUL WEEKEND, wherever you all

are!!!

LOVE & HUGS, grandmoMBEV