Introduction

November 2, 2001

Thanks for the welcome and asking about my son. He is

doing quite well. I believe all the exercise he takes

in has made a big difference for him. Of course, where

you gain in one area, you have to struggle to gain

ground in another. We have to work harder to keep the

weight on due to all the exercise and sports. How is

your daughter doing?

Gala, mom of Logan 13 w/cf

--- c hoff cjohoff@...> wrote:

> Welcome!How is your son doing? I'm sure this group

> will add to your support because their a great bunch

> of people.

> Cathy mom of 19 w/cf

__________________________________________________

November 2, 2001

Welcome to the list. Where do you live?

Jen

Mommy of 7, 3 with CF (in TN)

> Hello everyone.! I am a new member. I have 2 kids, a 13 year

old son

> and a 10 year old daughter. My son was diagnosed with CF at

the age

> of 3 mos. We have been very fortunate to have had a great

support

> team of doctors, family, and friends. I'm looking forward to

hearing

> from you!

November 3, 2001

Hi Jen,

My family and I live in Ark.

--- ron88jen@... wrote:

> Welcome to the list. Where do you live?

> Jen

> Mommy of 7, 3 with CF (in TN)

__________________________________________________

November 3, 2001

Gala,

Where are you in Arkansas? I am in Arkansas.

Christy

Mom to Mackenzie 4 w/cf and Peyton 1 w/o cff

Re: Re: Introduction

Hi Jen,

My family and I live in Ark.

--- ron88jen@... wrote:

> Welcome to the list. Where do you live?

> Jen

> Mommy of 7, 3 with CF (in TN)

__________________________________________________

November 3, 2001

Gala ; Welcome to our list; I think my post got fowled up last time I

sent it,

or maybe I just got it fowled up, but it didn't say what I had intended,

namely:

WELCOME; this is just the best, most comforting, informative and supportive

list;

I just know that you will love it, said she bragging about all of us! Love

to you and

yours,

n Rojas

November 3, 2001

Hi there. I lived in Ark for 6 years as a kid. We lived outside pine

bluff....actually, right near Grady (try to find that on the map) on

Cummins Prison Farm (Dad was commisioner of corrections...I

was not an inmate in kindergarten, lol)- Anyway, nice state. Do

you have to go all the way to little rock for clinic? (or maybe you

live there making it much more convenient.)

Welcome to the list.

Jen

-- In cfparents@y..., Gala wrote:

> Hi Jen,

>

> My family and I live in Ark.

>

> --- ron88jen@a... wrote:

> > Welcome to the list. Where do you live?

> > Jen

> > Mommy of 7, 3 with CF (in TN)

>

__________________________________________________

>

November 18, 2001

Welcom, , and Alyssa! Thank you for joining us. I hope your

family is

doing well and I encourage you NOT to feel guilty! We all carry genes that

our kids

may or may not inherit, and if you really think about it, there may have been

kids and adults who died of lung disease in each of your families on both

sides and not much

was made of it, as cf was not commonly known, and illness was. Our kids are

very

fortunate to have the parents who are on this list! Love to you and all of

yours,

n Rojas wcf, mom of 3 adults, youngest wcf--all doing pretty well.

November 19, 2001

Hi ! Welcome. My son is 14 months old and was diagnosed in July of

this year.

We felt the same way at first, about the genetics thing -- still felt guilty

even though we can't help passing on genes! Denial is a pretty powerful

thing, too.

I'm glad your son is doing well. I hope kindergarten goes more smoothly.

Hey, at least now you know what to advocate for and what the issues will

probably be.

mama to 1 yo w/CF and 3 yo woCF

> From: ck570@...

>

> Hi.My name is . I have a 5yr.old boy with C.f. and a daughter

> 6.5yrs. old who doesn't haveC.F. My son was diagnosed with the blood

> they took from his heel while in the nursery. They ran some sweat

> tests and those all came back positive about 2 months later. We were

> shocked as C.F. never before showed up in either side of the family.

> We started to do research as soon as we got that first word. How

> could this happen? What did we do wrong? Was it when I went out

> with an evening with some friends? At that time I didn't know that I

> was pregnant. If I knew then I wouldn't have had those couple of

> drinks. Was it all the X-rays we experienced during my last

> trimester of pregnancy. Or maybe it was possible that I was around

> too much smokers. Ashma? My grandmother has episodes of that so

> maybe our son was misdiagnosed. NO,NO,NO,NO,NO, the doctors kept

> saying. I didn't do anything wrong. We were in denial (and sometimes

> I think we still are)for a long time. It is all in the genetics.

> Thanks to Dr. , our son is doing very well at this time. Our

> family still forgets that he has C.F. so they need to be reminded of

> the enzymes and the ciggarettes. He was also enrolled in a Head

> Start program but they weren't taking his health seriously. There

> was another child with C.F. there and they were coming into contact

> with each other on several occasions that I saw. So, just how often

> were they letting this go on? They knew that these 2 couldn't be

> around one another yet they let it happen. The last straw for me was

> when the bus went right past us on the first day of his 2nd year out

> there. Found out that the other little one was riding that bus. I

> asked them ahead of time if this was the correct bus since he didn't

> ride it last year. The other one with C.F. did. Come to find out,

> guess who was on that bus? The other little one. They were even

> going to make me provide other transportation for days that my son

> was on his TOBI treatments. During these days we wouldn't get done

> doing treatments until almost 9:oo and the bus would be here 15

> minutes before that. After pulling him out I found out that they

> needed to provide special transportation because this fell under a

> disibility. It wasn't like we were goofing off and missed the bus. I

> get myself so worked up over this issue that I'm so afraid what

> Kindergarten and the whole school thing will bring. I guess that's

> enough for now but I'll stay in touch. My e-mail is

> ck570@... w/ and Alyssa

December 31, 2001

> Hi all, my name is . I had Open RNY bypass on Feb. 1,1999

> I started at 326lbs, I am now at about 220lbs. I am not happy with my

> result at all. ly I am quite afraid. Right now I am in a

> carbohydrate mold. I can't seem to get full. I had this surgery with

> the expectation of not being able to eat sweets or a lot of fatty

> foods without getting sick. But that is not the case, I can eat

> anything, candy, cake, fried chicken, fried anthing, and it don't

> bother me at all. I am very dissapointed with this surgery on that

> part. Don't get me wrong, I feel much better and look much better

> than I did before surgery but I was expecting to at least get under

> 200lbs. I would do this surgery again in a heart beat. I am 5'6 and

> I wear a size 18 and some 16 and pants, large and extra large and

> sweaters. I am afraid my time is running out. That so call window

> I keep reading about. It will be two years for me soon. I know

> what my problem is but I just can't seem to get my act together.

> To be honest I did not have self control before surgery, and I

> certainly do not have it now. I am so afraid of failing this just

> like all the diets I have been on. Can someone Please tell me how to

> get back on track. Is there a pill, or something.

, that's another one of those 'head in the sand' things. People all

told me before my surgery last year that I wouldn't be able to eat sweets or

bread, or friend chicken and I can. I eat all those things in moderation. I

too have lost weight since my surgery (175lbs) but am not satisfied yet.

IMO the key to people like us is exercise. Don't try to kill yourself or

anything, but we cannot (let me repeat that CANNOT) use this surgery to

dictate what we can or cannot eat. We still have to use good judgement and

exercise to help get rid of the lbs.

Girlfriend, meet me at the Y for water aerobics.

;-)

December 31, 2001