I was right.

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LuvMy2Girls

New member
Well, Madelyn had a sweat test today & they said that 40 was borderline....she was a 9! He said it was perfect. He said he was going to send her to a G.I. specialist about her bowel movements and then I remembered about the rectal prolapse. I had allready told other things and he said it really sounded like cf & it isn't uncommon for a sweat test to be inaccurate. But when I mentioned the rectal prolapse his mouth dropped open and they held the doors at the lab for me to rush over and get a blood test. We will have the results in 3 weeks. I didn't want to be right , but I didn't want to be left in the dark. They are 99% positive it is cf and said they want to test for all the gene mutations b/c the sweat test came back so normal. I'm sad for my daughter, But I'm relieved at the same time. She weighs 13.5 lbs. Not what we wanted but he said it was good anyway. I'm been real emotional lately anyway b/c me and my husband ust seperated a week ago and are getting a divorce and I'm so confused b/c I don't know how I'm going to be a single mom with 2 kids, much less one with cf. But there is no going back, it was my decision, but are there any moms out there that are single with a kid with cf and have to work? Will my job fire me if I miss too much work? I just needed to vent. I feel like I'd be cheating her if we get a divorce. Can stress make her worse? Should I get my oldest checked for some kind of problem? I know she doesn't have cf, but what about her pancreas or something? I just needed to vent.
 
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Emily65Roses

New member
Good for you for pushing the subject... and as for being fired for taking excess time off for a sick child, that is illegal. It's called the Family and Medical Leave Act. Read this if you're curious:
<a target=new class=ftalternatingbarlinklarge href="http://www.dol.gov/esa/whd/fmla/">http://www.dol.gov/esa/whd/fmla/</a>
 
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Emily65Roses

New member
Good for you for pushing the subject... and as for being fired for taking excess time off for a sick child, that is illegal. It's called the Family and Medical Leave Act. Read this if you're curious:
<a target=new class=ftalternatingbarlinklarge href="http://www.dol.gov/esa/whd/fmla/">http://www.dol.gov/esa/whd/fmla/</a>
 
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reillybug

New member
Feel free to email me. I am a single Mom with one child with CF. I work full time as a Paralegal. My email is curecf4reilly@hotmail.com. I am still a "newbie", but I am willing to listen!
 
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reillybug

New member
Feel free to email me. I am a single Mom with one child with CF. I work full time as a Paralegal. My email is curecf4reilly@hotmail.com. I am still a "newbie", but I am willing to listen!
 
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damiensmom

New member
Hi, my name is Aria im 33 years old never been married and I have 2 children. Canyon and Damien they both have diffrent dads.My 9 year old is in perfect health never even had the flu. Damien is 4 months old and has cf. I have made lots of money in my life and I never saved a dime or even spent it wisely,with the exception of spending it on my son friviously i might add. A ironic realization to share with you is, I have always considered the not saving and unaquired possessions somthing I should regret and some times did. I quit working for good June 22 2004. Got on welfare and applied for income based apartments not cause I knew I would have a child with cf but to stay home with Canyon.Point being I have never considerd being broke a blessing but I do now cause the medical coverage for Damien is priceless so 2 speak . I live on 279.00 and 400 in food stamps that is it and Damiens Meds are taken care of I dont worry and praise god I hear what middle class income gets you when you have acf baby and lord thank you im at poverty level . I could never trust anyone with Damien I have stay home with him.I trust and belive there is no other person place or thing in life that will ever need me more than he does, and nothing ever will. I know my purpose in life is to take care of a child with cystic fibrosis and I do it proudly. I have heartache there is more to come.He has already made me a richer person than all the money in the world could.
 
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damiensmom

New member
Hi, my name is Aria im 33 years old never been married and I have 2 children. Canyon and Damien they both have diffrent dads.My 9 year old is in perfect health never even had the flu. Damien is 4 months old and has cf. I have made lots of money in my life and I never saved a dime or even spent it wisely,with the exception of spending it on my son friviously i might add. A ironic realization to share with you is, I have always considered the not saving and unaquired possessions somthing I should regret and some times did. I quit working for good June 22 2004. Got on welfare and applied for income based apartments not cause I knew I would have a child with cf but to stay home with Canyon.Point being I have never considerd being broke a blessing but I do now cause the medical coverage for Damien is priceless so 2 speak . I live on 279.00 and 400 in food stamps that is it and Damiens Meds are taken care of I dont worry and praise god I hear what middle class income gets you when you have acf baby and lord thank you im at poverty level . I could never trust anyone with Damien I have stay home with him.I trust and belive there is no other person place or thing in life that will ever need me more than he does, and nothing ever will. I know my purpose in life is to take care of a child with cystic fibrosis and I do it proudly. I have heartache there is more to come.He has already made me a richer person than all the money in the world could.
 
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JazzysMom

New member
I dont know what state U live in, but even tho things have worked for you now.....are U concerned about reforms of the system which wont allow U to stay home? U are right about most middle class especially when U have someone in the family with a chronic illness. We make too much for assistance, but not enough to quite handle all the meds, etc on our own even with health insurance. CF is a very expensive illness to care for.
 
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JazzysMom

New member
I dont know what state U live in, but even tho things have worked for you now.....are U concerned about reforms of the system which wont allow U to stay home? U are right about most middle class especially when U have someone in the family with a chronic illness. We make too much for assistance, but not enough to quite handle all the meds, etc on our own even with health insurance. CF is a very expensive illness to care for.
 
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anonymous

New member
I know I can get family assistance w/out being divorced & she is on medicaid. But if I go that route with welfare etc...can my husband get custody of her?
 
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anonymous

New member
I know I can get family assistance w/out being divorced & she is on medicaid. But if I go that route with welfare etc...can my husband get custody of her?
 
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