New to the group!

[Guest guest]

Hi everyone. I just found this group, and I'm glad I did. The other

CF board I found was on ivillage parentsplace but it's not very

active. I have a 7 week old daughter who has CF. I also have a 21

month old son, Dominick, who does not have CF, at least we're pretty

sure he doesn't. Hasn't had a sweat test, but is very healthy and

his newborn screening test did not show he had it. We found out

Kaley has CF through prenatal tests. I was tested just to see if I

was a carrier for CF. My midwife offered it and I said sure, why

not, never even thinking it was a possibilit. When the test showed

I was a carrier, we had my husband tested. We were shocked to find

out he was a carrier also, so we decided to have an amnio. The test

showed she has CF, df508 or something like that (still new to all

the lingo). As hard as it was, I'm glad we found out before she was

born. Gave us some time to get used to it and to do some research.

We live in Colorado so we take her to Children's Hospital, and I've

heard very good things about the clinic there. Our pediatrician

told us if Kaley has to have something, CF was a " good " thing to

have in Colorado because of the doctors at Children's.

Kaley has been on Ultrase and ADEK's since 1 week of age. She hates

the vitamins, any thoughts on making it easier for her? She was

born 7lbs 7oz and was 9lbs at her 1 month appt. She's growing well,

and hasn't had any respiratory issues (knock on wood!). That is my

biggest worry since Dominck is in daycare. We go back to the clinic

next week for another check up.

I'm very glad I found this, even with all the research I've done,

it'll help to be able to ask questions and talk to parents who have

actually been through it.

Jenn

mom to Dominick, 21 mos and Kaley, 7 wks