CF mother wants to discuss some with u all

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FarzeenCfmom

New member
hi,
my CFbaby is 11 months old. his birth weight was 2.5kg. and his current weight is 5kg. so u can imagine how he looks like, according to doctor he is really very sevior and he would b die in 2 or 3 years. i m so scared, im obeying all doctor's instructions like i m giving him food after every 2 to3 hours, giving him nebulizers and enzyms, etc
before 4 months he was on NG and oxygen but thanks to God that now he is taking food by his mouth not with his NG. and he can breath with oxygen.
i m so scared for him. i want to discuss so many things belongs to CF with people around me but nobody wants to listen according them i m making them bore or why i always cry etc but i think that u cf moms can imagine that how difficult is this to watching our kid coughing all day, it is terrible. i really feel so bad that i cant help him i m useless, will u all reply me at my email address because it is really difficult to find our topic after some days bcoz i wont use computer daily bcoz of my cf baby, he depends all to me, even he dont drink water with someone's hand.
waitng for ur reply
Mrs Farzeen Ovais
 
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anonymous

New member
Just keep doing what you are doing even if you have to give your baby treatments 4 times a day! Stay on top of it and don't give up...I will pray for you!

Mother of a 4 year old with CF
 
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anonymous

New member
My CF baby has been generally 'healthy' but I know you must be scared. I hope there is someone you can talk to who will at least listen to your fears and concerns. It is so hard when it is your baby. Just keep on top of his health and listen to your health providers. Don't lose hope.
 
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anonymous

New member
I'm a mother of a 16 yr. old son with CF, mother of four girls without CF. As a mother I KNOW the
pain we feel for our children. IF we could take the CF ourselves I know I would. I even tried to ask
God to let me have CF instead of my son..................................... I begged God in tears. What I heard
God tell me in such a tender way was that HE understood what it is like to watch a son suffer and that
HE is going to be with me and my son! Please keep talking, on this site where your surrounded by
parents and people that understand the CF stuff. I would recommend that you find a support group
in your area................ talking is such a help emotionally!!!!!!!!!!!!!!!!!!!!!!!!!! Please know that there
are others who understand the issues and I am praying for you dear!!!! Michelle...................
 
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anonymous

New member
mrs. o
We cf moms all relate to u. Understand we all go thru different levels of illnesses at different times. There will be times when our kids are really sick and then times when hey-it's going pretty good. So know that with cf-it's a season each and every time. And each time they all change. Get through this season and don't worry about tomorrow. God has it under control. We don't have every answer but that's ok too. We have enough on our plates as it is. Let's let our heavenly father have that burden and we can all be good mothers to the best of our abilities and take one day at a time! Your doing good and i will be praying for you.
nikki's mom
 
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anonymous

New member
Reading your post, my heart ached for you. My daughter has been very healthy since we found out she had CF, but at first, we didn't know what was wrong with her. She was sick for six weeks & ended up in the hospital. They said she had RSV & probably asthma. They cough was heart wrenching. After 6 weeks of neb treatments, nursing her every hour (that was the only thing that calmed her down), and just taking turns watching her while she slept. I was utterly exhausted. I couldn't speak, think or barely function. My hubby came home from work & listened to her & asked if I knew her cough was worse & her lips were turning bluish when she coughed? I didn't because I was soooooo tired. She ended up in the hospital & treated for pneumonia. She was diagosed 8 months later with CF. It will get better, because you will get better. Your baby is so young & you seem overwhelmed. These treatments will come easier & all the info will start to settle with you. You are going through the phases of learning about cf & taking care of a sick baby. Hopefully, you have a friend, sister, neighbor or someone that can help you out a little. Even if it is just one treatment a day, that will give you a break. If you ever need to talk, email me at curecf@adelphia.net.

You are in my thoughts & prayers,
Karon
mom of 3 yr w/cf
 
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