Newbie Intro

[Guest guest]

Hi, I am , Mom of 5 yo w/cf. I am currently on Cystic-L, and

the cysticfibrosis list, and sharktank. I never knew there was a list just

for parents, my husband's gonna kill me for spending so much time on these

lists ! :) Oh well !

I believe knowledge is power. The more I know, the more I feel in control of

this terrible disease.

We are from Massachusetts and go to Mass General Hospital in Boston.

My daughter is doing okay. She was diagnosed at 18 mos. because of a large

tummy, and stomach pains. She was hospitalized soon after with her first

lung infection and cultured P.A. She is a double D508.

Since then however, she has not been hospitalized, and no longer cultures

P.A. (she's had 5 cultures since). (I know, I know . . P.A. rarely ever

completely goes away, so I assume it's lurking somewhere, but I can hope its

not!).

Stephi has a lot of tummy problems w/blockages. We are currently playing

with the enzyme dosages to try to get it right. She can go from being just

fine, to having a blockage in a matter of 2 days. It sneaks up on us, and I

hate it. She is in so much pain when it happens.

Stephi just had her 5 yo checkup and weighs 51 lbs (95%), 45 " tall (95%), got

100% on her first PFTs, 99 ox sat, and a clean xray ! We are excited.

We are hoping something good is going to come of this new " discovery " DHA

and/or CPX. We need something to save our " babies " !

So that's about it on us. I look forward to meeting all of you.

(Mom of 5yo Stephi)