cystic fibrosis.....

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Postby Nina3117 » Fri May 15, 2009 10:15 am

Elizabeth had another surgery on tuessday the day her sweat test was supposed to be, so they held off until yesterday. Unfortunately they could not get her to produce enough sweat to collect a sample, so they have to wait a few weeks and try again. You are absolutely right about the mutations and them not testing for them. That is what we are being told as well. Her belly was distended before the perforation, but she has been pooping up a storm, so they don't think that is what it could be. They are leaning towards a birth defect in her stomach.
Nina ~ 26
DH ~ 30
DS ~ 1
DD ~ Born March 11, 2009
:angel: 5 Weeks
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Postby fuel1316 » Fri May 15, 2009 1:00 pm

ooh ok. well i guess the BD in her stomach would be better than CF (depending on the BD) but they didnt think it was CF in gwen up until her surgery. they kept thinking it was HURSCHPRUNGS disease... she did a biopsey and it was negative so they just kept saying "its probably meconium plug syndrome" until her surgery and when they came out they said "her meconium was SOOO thick it HAS to be CF.." so... im holding out hope for you! let me know how the sweat test goes when she gets it.
Chris & Elisa Married October 5th 2007

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Postby Toribear5 » Fri May 15, 2009 1:48 pm

I'm holding out hope for you too! I have been keeping up with both your babies!
Tori: 31 DH:29
BFing, BWing, XRFing, baby food making, sign language teaching loving Mama!
Brett Thomas born March 17, 2009
Clara Rose born May 6, 2011


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Postby kellyp » Thu Nov 19, 2009 2:39 pm

I know it's been awhile since you all posted on here, but I just found this part of the tww site. I have a daughter with CF as well. She is such a sweet, lovable, adorable, smart little girl. I cannot believe how she has been able to adjust to this disease...better than mommy for sure :D Really just wanted to say thanks for starting this post, it's nice to read other peoples stories who are in the same boat. My daughter is now almost 21 months old (we found out when she was 9 months) & she is doing really well....still growing slowly (she is on a g-tube for night feedings to supplement cause she doesn't eat enough), but she is getting up there, she's at 20.8 lbs :D
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