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My daughter fell in soccer in the Fall and they thought she broke her elbow, it turned out that she dislocated her radius. She did have to have surgery, they had to open up her arm and put it back in place. I almost felt the ortho surgeon wasn't concerned enough about the CF. Turns out she...

My son has had his Mickey button going on nine years. So it has been through just about everything with out any problems. We have swam at beaches before and if I remember correctly it did get sand under it one time and get a little irritated but nothing a bath didn't take care of. Just a...

My son is now 13. He has had three sinus surgeries the first one at age 6. After the third one I (and the ENT agreed) that we would not do another one unless it was drastically needed. Even though it was relativly a minor surgery it was too hard on my son, the fear and anxiety going in to...

My son is now 13. He has had three sinus surgeries the first one at age 6. After the third one I (and the ENT agreed) that we would not do another one unless it was drastically needed. Even though it was relativly a minor surgery it was too hard on my son, the fear and anxiety going in to...

You would think that after 13 years of this I'd get use to it, but I'm not. I'm so frustrated. Does anybody else get frustrated that they can't ever second guess the doctor's at clinic visits? We had clinic yesterday (250 mile one way trip). I don't know how many times we gone up with the...

You would think that after 13 years of this I'd get use to it, but I'm not. I'm so frustrated. Does anybody else get frustrated that they can't ever second guess the doctor's at clinic visits? We had clinic yesterday (250 mile one way trip). I don't know how many times we gone up with the...

Angie Boy do I hear you. We've had a very similar experience with a sinus surgery, was told to be there first thing in the morning. My six year old hadn't had anything to eat or drink all night we waited and waited all day while they took kids back who waited for 30 mins for ear tubes and...

One of my favorites that hasn't been mentioned yet; Psalm 90; 1-4 Those who live in the shelter of the most High will find rest in the shadow of the Almighty. This I declare of the Lord: He alone is my refuge, my place of safety;he is my God, and I am trusting him, For he will rescue from...

I was glad to hear from you. No, my son never coughed up anything like that. The one thing that I can remember him complaining about was pain in his chest. It was very 'localized' meaning that it was always a certain spot. I had addressed this with our primary care Dr and the CF clinic. He...

Oh my gosh. I haven't checked this site for about a week and decided to before I go to bed. There you were. Yes my son cultured Nocardia two years ago when he was 10. I think it kind of freaked the doctors out because none of there CF patients had ever tested for it. He had been very sick...

Hang in there. I've been there and I think I know what your fears are. Let me tell you my situation. I have three children the youngest two have CF. My son the middle child has had by far the roughest time. Eighteen hospital stays; tune-ups, surgeries ect. He seems to really have a...

Hello I am the mother of three two have cf. My son with CF had a g-tube placed 7 years ago I hadn't even heard of it in treating cf patients back then. Although it's not always easy, it has made a difference in his health. Although eating enough is still an issue with him it eases the tension...

Hello I am the mother of three two have cf. My son with CF had a g-tube placed 7 years ago I hadn't even heard of it in treating cf patients back then. Although it's not always easy, it has made a difference in his health. Although eating enough is still an issue with him it eases the tension...

Melissa, It is not you fault. I have three children the younger two have cf. Boy 12 girl 7. Eating and gaining weight has been an issue since he was born. He too got a g-tube at 5 years old he has had it for 7 years it did help and his health improved. But he still eats very little...

Stefani, Welcome to the club you never asked to belong to. I know the disease seems so overwhelming at first. You must be dealing with that still. My children didn't have the bowel surgies that your little one has had but my son had a rough start. He is 12 years old my daughter is 7 and...

Hey hang in there I've been there. I've have two children with CF and there have been times they've put them in the hospital because of the syptoms you decribed even though their cultures grow normal flora. Then they treat them with the antibiotics from past cultures. It's really hard for me...

We have two children with the Delta f 508 mutations they are 11 and 7. One child 15 that is healthy. Life is rough at times. But I don't regret having any of my children they are truly each a blessing. All in all we lead a fairly normal life it's just more complicated. Mom

HiI have three children, two with CF. We have struggled with my son's(11) weight since birth my daugter(7) with CF doesn't struggle nearly as much. My son has had a feeding tube for 6 years and still is in the lower %. I don't think is knows hunger or ever has an appetite. He always loses...

Yes we live in a very rural area in fact we have to drive over 200 miles to a clinic visits. We have 3 children Boy 15 no CF, Boy 11 CF and girl 7 w/CF. That was one of the first questons we asked when diagnosed if the dust, animals, ect would be harmful. They said like everything else there...