CF...what else??!

[Guest guest]

In a message dated 3/3/00 9:01:58 AM Eastern Standard Time,

bwiles@... writes:

> Jody is 12 and worries more about her sister than anything

> else in life

Hi Barbara, nice to meet you. I read this line and thought about what my

na (almost 12 no CF) said to me the other night. First off let me tell

you that Bri is very sensitive, moody, angry, etc. She shares a room with

(6w/cf & ds). Bri asked all of us what our worst fear/nightmare was.

She is afraid of everything (rain, snow storms, strangers). I tried to keep

it light and said I was afraid of falling. I just had back surgery and I

have this fear of falling. Bri wouldn't tell us her fear, because if she did

it would come true. I said no that is only with wishes. Anyway she finally

told us. Her fear is that would die during the night, just stop

breathing and die. I was heart broken. And then a light bulb went off,

duh!!! This is why Bri doesn't sleep and why she has headaches, stomach

aches, and is always coming to get me to tell me that is coughing. I

just hugged her and tried to reassure her but I really didn't know what to

do. Anyone else have this going on in their house? Any advice?

I too think about if Bri had CF, thank goodness she doesn't. She throws away

a little tiny fluoride pill and cries if she has to take Tylenol which is

still the liquid!!

Sally

Mom of na, w/asthma & 6w/cf & ds

[Guest guest]

I am the mom of a (up to now) very active 16 sixteen year old

daughter, . She is just starting to see the long term effects

of CF and it is really starting to bug her more and more. She was

diagnosed at two days of age with Meconium Ileus and had surgery at

three days of age. She has dealt with this all her life, but

because it is now starting to slow her down, she is seeing a

therapist twice a month to deal with all the issues that are

arising. She has done fairly well over the years with only what I

would consider small setbacks here and there. Her dad (Alan) and I

are very active in fund-raising and are currently working on a fund

raiser scheduled for April 15. has one little sister, Jody,

who does not have CF and was tested in utero and is not even a

carrier. Jody is 12 and worries more about her sister than anything

else in life although they disagree over everything including the

color of the sky. Barbara

[Guest guest]

Oh Sally,

What a love Bri has for her sister, brought tears to my eyes. My oldest son

gets concerned (he is 11, almost 12) about , especially when he is sick

or starting to get sick. I think mostly because they are so close and

because my children understand what lung disease can do, and that it can be

fatal. They watched my Mom go from doing occasional breathing treatments to

wearing O2 24/7 and then be put on the vent 4 times, and finally die at the

age of 50. So truly understands that when is sick is can do

damage. It is so amazing how different and argumentive they can be with

each other, but they really do love each other so much.

Take care and Good health to all,

Daelynn

ps off to Florida tonight to spend the weekend with hubby, (no kids).

Wahoo!!!