CF/MISC W/GRANDMOMBEV

[Guest guest]

HOWDEEE YOU'AL .

HAPPY HOLIDAYS & THE WEEKEND OVER.READY TO GET ON WITH THE CHANGE OF

SEASONS...........

A GREAT BIG " WELCOME BACK " TO ALL YOU RETURNEES...ITS WONDERFUL TO

SEE THOSE FAMILIAR NAMES AGAIN....

AND , OF COURSE " WELCOME' TO ALL THOSE WHO HAVE JUST JOINED US ON ONE

OR THE OTHER OF THE LISTS ABOVE.WE WELCOME YOU TO ALL.........SUCH GREAT

FOLKS WITH VERY INTERESTING INPUT.THANKS!

o.k. HERE GOES ALL DIFFERENT KINDS OF STUFF. IT WILL BE ABOUT CF ALSO

AS MY GRANDDAUGHTER , ERIN, WHO HAS CF WAS INVOLVED IN ALL OF MY HOLIDAY

!! :) I HAD SEVERAL OF MY KIDS WITH THEIR KIDA IN TOWN & WITH US ALL

TOGETHER ALMOST EVERY MINUTE-SECOND:) 20 IN ALL & FOR 2 DIFFERENT

ACTIVITIES, WE HAD 4 MORE TEEN GUYS TOO.

what ELSE DO TEEN GALS(PRETTY TOO) ATTRACT... BUT WE WERE SMART WE SENT

THEM ALL OUT TO DISNEY FOR MONDAY. THEY LEFT MY PLACE AT 9:30 AM .DIDN'T

GET BACK UNTIL 1:25 AM. (THEY CLOSED THE PART , THEY ALL WENT TO DENNY'S

FOR BREAKFAST.

THE DAY BEFORE WE HAD HAD A BIG EASTER DINNER.HAM. THE WORKS & THEN

SOME. EVERYONE BROUGHT DIFFERENT THINGS & I DID THE HAM & MUCH OTHERS

LIKE DRINKS PAPER PRODUCTS FOR SNACKS, & LATER .

oops.I just looked -so sorry about all the caps.too much for me to do

over -hahahehe.......

They had a ball .the guys left early after \noon to go to the PREDATORS

game

& the teens went out to Downtown Disney park .played games , watched

others , etc. a fun shopping place too .Had caricatures made , stuff

like that.

They decided then that they wanted to go to eat at KOBE's Japanese Steak

House.so that left the gals(moms) home.we decided to play cards &

Tri-Dominos until the football guys got home. -What a day .It was

really nice though .then we had some pool games & visit chat.

Oh, They Saturday night we had a big BBQ with extras (not family) that

also came. Many got in the Hot tub thru-out the evening .The

kids(15-18yrs) played pool & basketball & watched several play the

video games on computers. there is so very much to do at each ones

home....I had7 with me in my condo . But it worked . Would have been

nice to have a third bathroom though in the mornings.-hehehaha-

there was so much more in between as well. Oh, while the kids went to

Disney (some from here in Orlando had to go to school & daddies to work

.. )

I took my 3 daughters(Kelley, Patti. & Colleen), shopping . WOW. That

was fun too. It of course started at breakfast .then Ross & TJ Max never

saw things move so fast . :):)oh, also

Bed, Bath & Beyond, too.NOW that was our holiday .I am sure I missed

stuff too:).....Soooooo How was all of yours.............????

ANDREA F.I am glad 's clinic went as well as it did .it will

continue to improve, I am sure. You are doing such a great job of

keeping up with it all

KELLEY G. I passed your info & request to Mike .the pharmacist .I am

sure he will take care of your request. But I will also double check

today .hope to hear from you again soon & that 's levels are up

again .

Jeninca1010........Your advise & suggestions on helping the wee ones get

to sleep was so very good. Some times it is hard to be sure, especially

when you get feeling guilty about wanting them to be asleep . Some feel

like they shouldn't as they are the mom's BUT, that isn't the case. it

isn't easy to be able to nurse & be so tired as well. So, so many of

your thoughts were great. I nursed 5 of mine 7 was able to get them to

sleep thru the night earl y on. it helped. I had my so close in years

too.I NEEDED the sleep as much as they needed to food:) However , the

y didn't have CF so that makes of even more concerned too.My

granddaughter was finally put on projestimil as she was having digestive

problems .She had been born with a mecomium iliues too.

ANYWAY.thanks for your suggestions.

DAWN M. Gosh, you said kids were each different in your family-That is

so true in most , I have found. It sure does keep the parents hopping.

you get one part all down & you think it will work for all-hahahehe

Surprise , surprise .well, maybe sometime with something's , but

generally . you deal differently with each one Soo, your advise hit the

nail on the head -as usual . have a great week thanks for your

posts..............I liked your mom's phrase.I remember also, " this

too, shall pass " :) WE hope so:)

ANGIE P. I have heard allot of gals say they did that too. I could

never do it -my back would ache. they had us do that in the hospital, I

did so much better & they seem to when I just sat in a rocker .the same

chair my mom had used ,maybe it was the rocker :). I did also have a

bottle supplement .I wasn't sure when ever I would have to be away &

wanted them to not refuse anything but breast. The doc's suggested that

as my husband was out to sea most of their young lives, in the Navy.

wasn't fun .for me, So the bottle break helped me also get to store ,

etc. I think that was cute , he would take bottle from daddy , but not

mommy.Aren't these wee ones soo smart!!:)

MONIQUE. I do hope your feeling better now about Liam & the crying. as

you saw from so many responses , many have some sort of challenge , your

not alone in that AND.Liam will be fine. " This too shall pass " .not

trying to be funny here But .No, I am almost sure the crying wont hurt ,

BUT , of course , you don't want that. I do think that we think of the

CF allot when it comes to that as well, BUT, If it makes you feel

better, pass it across to the doc & get their opinion too.They must hear

that allot too.Best wishes. keep us posted on the outcome or " miracle "

you find out about

ANNA....I am so glad to hear your thinking about the alternative s &

natural needs of your family . I have used supplements with mine all

their lives & have ALWAYS had for me. I really believe, you are what you

eat....to a great deal . No , I am not saying CF here. But it cant

help, but HELP in that case too.! Always consider that as well.I admire

your

investigating this too. I hope you will also try.Let us know how you

feel after you have taken awhile. -Bet your better :)

KAREN M thanks for the heads up on the effect on birth control pills

of st. 's Wort pills. many , I am sure were unaware of that. it is

so nice to have so many informed for on these lists

Again , thanks to you & all the folks who join in .

DON H. Wheeeeeeeeeee, that was some schedule you all have going on with

the meds per day.Plus the home schooling. You all sound like your REALLY

on top of it WAY UP ON TOP !! 11 different meds, some at several times

a day.plus the schooling. I guess your recess is meds time. Golllee.

Bless you all . I sure hope maybe it will slow down some soon. take

care-hey, what am I saying that for .tats what you do all day is TAKE

CARE. It is worth it too.love & prayers to you & yours.!!

JILL . I hope you choose a new name now. I think that is crazy, having

to change But I know you will do a great job regardless of what name you

use. I hope by now , maybe you've seen Kara 's picture in INFORMER. it

does take awhile for them to get to CA. I think the P.O. just sends them

out if someone is driving that way -hahehaehe.love yA!!

JEN/RON. Hey gal et'al.........Haven't seen you on line much. I have

been doing so much traveling & exhibits , I haven't been on steadily

either. I tried taking the lap top & really don't have time for that

either. I am too tired when I get to the hotel room each P.M.

I do hope your Ed day worked well for you . Did I send enough stuff? if

some was better to use then another -let me know which was best & worked

better. That way I will know for others too. I just sent a group to

sprinkle for her with s new school teachers, etc. I hope

all is well with all my Tenn Gang family.I was so sorry to miss you all

again this last time. hope I can catch you soon.

LISA T. How is it all out there. I really likes the posts you've sent

lately .You sounded abit more up .let me know when you can , how all is

doing in the family..Love ya!!

CLOYCE .. So I know everything must be doing pretty well for you folks

& TARA too. (Hi Chris) :) I don't want to leave anyone out here.

How is that job doing .I wish they would go ahead a give you the

promotion you deserve.Such hours you put in .glee. talk at you later .

TERESA. Your so right!! telling ones child about CF is best , as you

did with Regina..

To do it yourself for your own child . There are stages, that they need

to get certain info , because if they read or hear or see something,

from someone else, they could be frightened -Many people just blurt out

things , that they really don't know, or say it right. .It's like you

said, about life expectancy.That can be very scary. It was to us when

ERIN was born & the nurse popped in and said , she was alright for right

now .

I asked her to explain, today ?, the week .?Just what did she mean.?

She said , well the life expectancy was 15 years. ....oh , My Lord, we

just about feel down .It was really a shock .We didn't even know what CF

was. So, I started learning THAT very day. & keep it up today...Your

very right & it was good to see your post. it makes us all look at OUR

situation & see what will best work in our families. Bless you & have a

wonderful week .

GOOBER GAL--Becky) we are sure excited about your getting your vacation

soon. If you get into my town (Orlando) , be sure & look me up , come by

, call . BUT most importantly . Have a super time. if you need anything

..have need of Doc, etc . call me

You have all my numbers .Stay healthy ..........

SHANNON K. Gosh Oh GollyGee-what a horrible accident that was. I am so

happy your all o.k. BUT.I don't think that whip lash is nothing serious.

It can really throw the rest of " you' out easily.I pray all will be

well & back in order as you get the new car 7 the kids memories will

fade. Hopefully yours will too. Such a terrible fright!!! Of course all

the happenings the weeks/days before were enough .I am sorry about them

as well But the accident takes over in thoughts as we write.it seems

your brother-in -law will be ok from his accident so, praise the Lord

for that one & the Aunt is a peace & restful now ....So, you need to get

the new car & start over for this month :)

MICHELE S..Congrats to you with the weight gain..It is always so very

nice to hear

such a good clinic report. keep up the good works.

AGNES M, I hope your friend Alison is getting better -maybe getting to

be home .I do believe that will be getting ready for his summer

stint with the Coast Guard. With knowing about him & his love for the

Navy -he will be ready a month early for sure, I wish him well in it

..........CONGRATS!!

ERIN, How are the books going. Well I pray . All your hard work & they

are so good..

JEFF--Camp FUNSHINE.I sure hope you have more folks that are coming this

year. It seems lots of folks are starting to feel the 3 ft rule makes

they not such a bad idea anymore. I do wish the CFF would remove there

opinion from that notice...EVERYONE I have heard at many of the Ed Days

, all feel that if 3ft rule /masks are used as needed, then they are the

very BEST therapy a kid can have. Good luck You all have fun now.:)and

be sure & report back to us all:)

MAJA, I hope your newsletter is getting done & you were able to use some

of the info I sent.It is so great that you are doing one there for your

Bulgarian friends.Bless you!!

MIKE L. I hope your doing well now & the home IV's are done .let us hear

from you soon........

FRED W.. HI THERE TO YOU & PAT. HOPE ALL IS WELL

APRIL BIRTHDAY FOLKS-IF I MISSED ANYONE. LET ME SAY IT AGAIN HERE. HAPPY

BIRTHDAY TO EACH OF YOU . MUCH LOVE TO YOU ALL.

I GUESS I HAD BETTER END THIS BEFORE IT GETS CUT AS TOO LONG(MAYBE IT

WILL -WE WILL SEE SOON.

LOVE & HUGS ALWAYS

GRANDMOMBEV

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