Hi Jenni,
My name is Renee...I have 5 kids, 2 w/CF. I recently moved from Minneapolis to South Texas so I haven't been online for a couple of weeks. I just read your posts and I wanted to say I am so sorry for all you are going through right now. My heart breaks for you because I remember the hopelessness you must be feeling at times. My oldest child does not have CF, but when my second child was born I knew almost instantly that something was wrong. There were just too many things that didn't make sense. I fought with several doctors but they just basically told me I was an overprotective mother. Kaitlyn was starving to death and there was nothing I could do to stop it. She would only nurse. She refused to take a bottle and could not eat any food. Anything you put in her mouth she immediately gagged on and threw up. She couldn't even keep liquid vitamins down. The doctors kept telling me I was just spoiling her and it was my fault she wasn't gaining weight because I allowed her to nurse, I was giving in to her. Anyway, to make a long story short, I sat home all day reading medical books until I finally figured out what was wrong (when she was 2 1/2) and I walked into the pediatricians office and demanded a sweat test. The doctor told me I was overreacting and that there was absolutely no way she had CF. He asked me if my husband and I were related...he thought that was the only way the kids could have CF. I refused to walk out of the office without an order for the test. Of course the test was positive and the rest is history. My third child ended up having CF also. Both girls are now 100% healthy since being diagnosed. Kaitlyn had been hospitalized multiple times prior to her diagnosis but has not been in the hospital since her 3rd birthday (she is now 10). The diagnosis is a VERY difficult thing to deal with, however, it can truely make the difference between life and death. The fact is that our children were already sick before the diagnosis, we just didn't know why. The diagnosis is actually a good thing because the kids can be properly treated. There is no doubt in my mind that my daughter would not be here today if she were not diagnosed properly. You sound like a wonderul mother who stood up for your children and you should be proud of that. You felt there was something wrong and you persisted, and this will probably not be the last time. I trust my instincts now more than I trust any doctor. I do what the doctors say but if I don't feel completely comfortable I am not afraid to say so. And I don't stop until I am comfortable with what they are telling me. In the end, it is we who are responsible for our children, not the doctors. We are the ones who will go to bed at night crying when our children are sick, not them. So we are the ones who have to stand up for them. Be proud of what you have done for your children. And there is no doubt that you will continue to do what's best for them. I totally agree with the previous poster... you need to take the time to absorb what's happening and do things as you feel comfortable. When and if you are ready to change doctors, you will. I apologize if I missed it somewhere, but I am not clear if the kids are being seen at a CF center yet. That is one thing I would highly recommend, for your sake as much as for theirs. CF is looked at as a death sentence by most regular physicians. The CF centers have a whole different concept of CF. My view completely changed when I first went to the CF center. I think that's what saved me. Realizing that CF is a part of their lives, not a death sentence. Anyway, sorry for rambling. I was very touched by your story and I think your children are extremely lucky to have you on their side. You are the number one person in their lives and it sounds like they have a great shot at life with you behind them. Best of luck to you!
