RE: Re: intro. My name is Daye

[Guest guest]

My only suggestions is to be calm, (that's the hard one) & know that there

are so many of us , many having been thru this and ,it aint easy in the

heart BUT, we are all here & getting on with life. You learn, you do & it

does work better.

Your being a great actor & letting it appear to the kids , that its o.k. &

all will be fine so as not to alarm & scare them. is the hardest part for

mommies & daddies.BUT , your great love for them , we'll help you thru that.

We are all her, write, talk , vent ..yes we do that too . get mad as hell at

the disease, but-------that's o.k. --that is normal . BUT it doesn't make it

go away, soooooooooo, vent. then , relax & get on with the day . Those

precious kiddo's are worth everything.

MY granddaughter is now 18+-(19 Aug 3) away at college in the mountains.

skiing-snowboarding, classes (honors-even in college yet) & is 6 ft tall.

Was cross country runner ....(#1 in her state for high school last year. )

She has fiancé........(gone with him4 years).......does all the NORMAL stuff

& funny as all get out . was class most humorous too. What I am saying is.

YES, she has CF .had surgery at 2 days old -mecomiun iliues----does her

pulmozyme with the vest & takes her enzymes. -Eats like a pig-hahahe- & also

works as a bank teller when at home & summers. sooooooooo, go thru those

tests & know -it will be alright...........take each day as it comes ...hand

these precious ones up to the LORDS care --you can help him too. & all will

work for you in HIS way., YES, you & yours are in my prayers during this

very stressful time. ---------come her. these folks are so

great----smart ---knowledgeable in CF , beyond even many doctors........been

there ----done that-is a great education.

Hope the tests clear up their status.........hopefully they wont have CF

....BUT---you do want to know .Preventive meds & care is the way to go

..whatever is the problem..

Do listen clearly to the docs----ask all the questions you want. YOU & YOUR

insurance are PAYING them............they aren't donation ANYTHING. GET

results!!!

If they are DX with Cf, I have much info.booklets-tapes, that are great for

both you all & the kids. so holler here if you want..........Always send me

address when requesting something too!!

(sorry this is so long -You can tell I am shy:):)

LOVE & HUGS< grandmomBEV

Re: intro. My name is Daye

Hello,

my name is Daye. Our daughter will be tested tomorrow (Fri.) for CF. Our

son

will be tested on Tues. There are symptoms and a bacteria in my daughter's

lung. I have tons of q.'s but for right now I wanted to say hello and ask

if

anyone has advice for us in the upcoming week including tips before, during,

and after testing. Thank You.

Also, if you pray we could use some support.

Daye &

parents of 5 children

ages 9,7,3,2,7mo.

daughter testing on Fri. is 7mo and has reflux aspiration, psudomonas in

lungs, and constant respritory infec.

son, 2 has failure to thrive even though he eats constantly and unhealthy in

general, also has white hair(people keep asking about that?)

[Guest guest]

Welcome to the list. I hope your kiddo's medical issues are resolved soon. The

time of testing and unanswered questions and fears is a tough one to go through.

We've all been there and understand how you feel.

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

[Guest guest]

Welcome to the list Daye. I'm M, I have 2 kids, a son Nick who is 20 nocf

and a daughter age 19 wcf. I hope it doesn't turn out to be CF but if it

is this is a great support group. The babies symptoms sound pretty suspicious.

I have no clue about white hair. There really isn't anything to do to get

ready. Sweat tests are painless, and the genetic test where they use the mouth

brush is too. the only pain would be if they need blood for some reason.

Oh and I do pray but this is a Non secular list so people are asked to not ask

for prayer. (not my rule but I try to follow it). Lets just say you'll be in

my thoughts.

love,

M