I realize I didn't actually introduce myself.
My name is Jennifer, I'm 33 and married with two children.
My husband and I both had genetic testing done when Andrew was
born. Nothing was found for my husband and I carry the same gene as
Andrew. There is no CF in our family that we know of.
Andrew...of course is my son that I told you about.
My other son, Alec is 4 1/2 and has a disease called eosinophillic
esophagitis. He currently survives on elemental formula EO28 by
mouth and about 10-12 other foods. (slowly expanding with food
trials)
I worked until my 2nd child was born and then found that between
both children's health issues...it was impossible to keep working.
Now I am a full time Mom. I'm glad that I can be home with my
children but we have to make many sacrifices in order to make it
happen. My husband has a great job with good insurance and for that
I am so grateful!~

Thank you so much for your replies. I think it is good to hear
others experiences that have traveled the road.

To answer some of your questions,
Yes...Andrew has had the more extensive genetic testing with no
other gene found...again....no 100%.
It's kind of weird because on the one hand, we do not want the
official diagnosis, but on the other hand...we're living the life
anyway. Does that make sense. I have just recently come out of
denial about my other sons disease realizing that he will not just
one day wake up and be able to eat normally. That probably sounds
wacked but I really thought this would be something he would out-
grow by the time he was like five. Mainly because this disease
seems so new and most dr.'s just dont know much about it.
So I guess with Andrew....I am frustrated right now, because I don't
feel like he does monitor himself. I'm wondering what age he will
be when he can do this and I don't have to constantly worry and NAG
about drinking and treatments and everything else. When I do not
remind him to drink his gatorade/water/juice....he just won't until
he is dehydrated. I forgot to mention with him that he is also
being treated right now for an aspergillus growth that they found in
his lungs at his last bronch. It is a 6 month treatment with
Itraconazole. When we started the Itraconazle the MRSA was gone
supposedly.
Um...what else. ...He is quite active for his age and especially
for what he deals with. He is currently doing basketball camp every
day for an hour at the local HS and they work like crazy and he
loves it. In the past he has done gymnastics and is very
successful...remember his physiqe. He does miss alot of things
though because if he is not doing well then I have to be the wicked
witch and say no. I know he will thank me later but it ususally
makes him mad. Also....we have missed alot of things as a family.
We have had to cancel more activities and vacations than I can
count. In fact...our camping trip was impromptu because everyone
was well! I pulled Andrew from the last two days of school even
though he has missed about 45 days this year and said....Want to go
to the BEACH!? He needed it...it is his favorite place....we all
needed it and so we drove 4 hours to Rockypoint Mexico and camped
500 yards from the ocean in an RV campground. I don't think ANdrew
was "more active than normal"...I was just thinking that maybe we
should have limited his time out in the sun/ocean more etc.? He did
not get sunburned.....but tell me more about Cf'rs and heat
exhaustion....maybe that was it....although if it was up to him...he
would have been out there tons more than what I said he could do.
We were still doing all of his normal treatments etc. but as I lay
awake at night listening to him cough and cough enough to wake him
up...I wonder if we are in a new stage of the disease or something
and he just can't cope with as much. I don't know.
Thanks for letting me ramble....
Jennifer