Re: A suggestion

July 10, 2001

What if we were to do a questionaire with some standard questions and

then we could cut and paste the questions from a post and add our

info and we could put our name (i.e. " Christy - INFO " ) in the subject

line for future reference? Some questions could be: What is your

relationship to a CF patient? What are your childrens names, ages,

and cf status? What age was diagnoses?...etc. If anyone wants to do

this, I would put it together - I would love to have some questions

you would like included if you want to e-mail me at

ck_jobe@....

Anyone interested?

Christy

> Since we have so many " newbies " on the list, do you think we could

all send in just a quick e-mail introducing ourselves? I know that

since I have been away for awhile, there has been ALOT of new people,

and I don't know how old kids are, how many kids some have, etc.

What do you think?

>

> I'll start out--

> My name is and I have been married for 14 years to a

wonderful man named Mark. We live in Fargo, ND, and have three great

children. a (she's my ice skater), DJ (who wants to be a

basketball player when he grows up, but his only hope is if he's as

good as Spud Webb! LOL), and Cody, who seems to be well on his way

to being some kind of performer when he grows up (he says he wants to

be a doctor and a Backstreet Boy! LOL LOL What a combo!). Cody is

my guy with CF, and he was diagnosed at birth, due to meconium ileus,

which then prompted the testing. He's only had one lung exacerbation

(last year in May), but he has had lots of sinus ( 5 surgeries, one

wash-out) and GI problems (more intestinal blockages than I can

count), along with a very poor weight gain throughout his life. He's

doing well right now though--we will be coming off of a 5-week course

of Tobramycin and Ceftazadime on Thursday. YAAAYYY--we're almost

done!!

>

> , mom to Codybug (pwcf, 5-1/2), a (wocf, 12-1/2) and DJ

(wocf, 7)

> smichelle15@u...

>

July 12, 2001

Hi and all,

OK I will join in, but I am a few days late reading emails, so I don't know

how old this post is. Anyway, My name is M or #3 (there are at least

4 's on this list. I am married (for almost 22 years, same guy!) Our

anniversary is coming up July 28. But we usually don't make a big deal over

anniversaries. We have two kids, Nick age 19, nocf and age 17 wcf.

She has been pretty lucky with her cf so far. She has had 12 or 13 sinus

surgeries and is due for another one. It is scheduled for July 25, but we

just got new insurance so I have a feeling it won't be happening that soon.

Nick will be a sophomore at Cal Poly Pomona in Sept. and will return

to her High School for the big Senior year. She has never had a boyfriend

but she wants one.

Well I guess that is enough for a starter. Oh, I forgot was

diagnosed at the age of 8 months. She had been losing weight, was very

salty, had yuk diapers, and a cough. I still think her pediatrician should

have thought of it, but he didn't and things got so bad he finally sent us

to Children's Hospital of Orange County (California). It didn't take them

long to order a sweat test. Of course it was positive so there ya go.

take care all, it is great to see so many new people!

love,

M #3 Mom of Nick age 19 nocf

and age 17 wcf

July 13, 2001

>

> Your Name (age)?: Morey(41)

>

> Where do you live?:Orange California, USA

>

> Name (age) of Child(ren) wcf: (17)

>

> Birthday of Child(ren) wcf:January 29, 1984

>

> Name (age) of siblings: Nick (19)

>

> Name (age) of spouse: (42)

>

> Your Hobbies:reading, movies, E-mailing, surfing the net

>

> Your Pet Peeve:people who smoke

>

> Your favorite Artist: Ummm I guess I don't have one

>

> Anything else you'd like us to know: A lot of people dread their

childrens teenage years but mine or actually Nick and 's have been

really great. They have done well in school and they aren't embarrassed to

go out with us. Very good kids, we got lucky!

July 14, 2001

Hi!

I'm new on the list. My name is Anita and I have 2 girls with cf. is is

6 yrs old and is 2 yrs old. We just recently gotten a vest and we

are starting to like it, it was just different but I know it is better in the

long run. My youngest has been through more than my oldest. Lots of

hospitalizations, but not recently, yeah!! She has had reflux surgery, a

picc line at home, a bronchoscopy to clear secretions and home nebulized

tobi. My oldest has had an ileus and sinus problems since her diagnosis at

14 months old but a rare respiratory infection. (before diagnosis she was

hospitalized and sick a lot). I am a nurse and it has helped a lot. I work

3 days a week and like everyone else I work really hard to make their lives

as normal as possible. My greatest help in the world is finding Gdattig (Deb)

to chat with (she also has 2 girls with cf) She has helped me more than any

doctor ever could because she can relate. I hope to hear about you all. I

hope I can keep up. I don't get to be on the computer much.. Anita

July 14, 2001

Welcome aboard, Anita; that's why this is such a great list; people like you

join us;

dive right in--when you have time! Thank you for joining this fascinating

list.

n J. Rojas wcf, Family Liaison person at CFRI (Cystic Fibrosis

Research, Inc.)

July 14, 2001

WELCOME to the list. It is a great big family out there/here.

You will I am sure give as much as you receive with 2 kiddo's

with CF wow..

I Will hold you in my thoughts and good wishes,

LOVE & HUGS,

GrandmomBEV

Re: A suggestion

Hi!

I'm new on the list. My name is Anita and I have 2 girls with cf. is

is

6 yrs old and is 2 yrs old. We just recently gotten a vest and we

are starting to like it, it was just different but I know it is better in

the

long run. My youngest has been through more than my oldest. Lots of

hospitalizations, but not recently, yeah!! She has had reflux surgery, a

picc line at home, a bronchoscopy to clear secretions and home nebulized

tobi. My oldest has had an ileus and sinus problems since her diagnosis at

14 months old but a rare respiratory infection. (before diagnosis she was

hospitalized and sick a lot). I am a nurse and it has helped a lot. I work

3 days a week and like everyone else I work really hard to make their lives

as normal as possible. My greatest help in the world is finding Gdattig

(Deb)

to chat with (she also has 2 girls with cf) She has helped me more than any

doctor ever could because she can relate. I hope to hear about you all. I

hope I can keep up. I don't get to be on the computer much.. Anita

PLEASE do not post religious emails to the list.

-------------------------------------------

The opinions and information exchanged on this list should

IN NO WAY

be construed as medical advice.

PLEASE CONSULT YOUR PHYSICIAN BEFORE CHANGING ANY MEDICATIONS OR TREATMENTS.

--------------------------------------------------

July 14, 2001

Welcome, Anita! We all look forward to getting to know you! You will find lots

and lots of great people on this list--along with TONS of support!

, mom to Codybug (pwcf, 5-1/2), a (wocf, 12-1/2) and DJ (wocf, 7)

smichelle15@...