<div class="FTQUOTE"><begin quote><i>Originally posted by: <b>NancyLKF</b></i>
We are also scared for how long she will live. We are looking for some hope and a support system and are glad to have found this site.
I guess we are looking for words of encouragement right now </end quote></div>
These are some best case scenarios, not intended to suggest that this is what everyone can expect. I am replying with this info because you asked specifically for hope and encouragement. This is intended to help round out the picture for you, not intended to suggest that living with CF is a piece of cake.
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My oldest son and I were diagnosed about 7 1/2 years ago with "atypical" (mild) CF. We have made a lot of dietary changes and lifestyle changes and have both grown much healthier. He has not been on antibiotics in nearly 11 years. I have not been on antibiotics in over 5 years. We both got off digestive enzymes about 2 1/2 years ago. He has taken little or no medication in about 2 years. I have gotten off 8 or so prescription drugs and currently only take half a pill of OTC gauifenesin in the morning.
Through various online forums, I know a woman in her early 70's with CF. She eats carefully, takes supplements, does a lot of research, and was very well taken care of as a child. She was born with meconium ilis and has "severe" CF. She does a lot of the same things I do, like consuming sea salt. I am always excited to hear her say "I do that too". It is evidence that some of the stuff my son and I are doing can help other people with a more severe form of CF than what we have.
Through various online forums, I know a man in his late 70's. He also eats very carefully and is very pro-active about his own health care, though he is less into the "alternative" stuff than I am or than the woman in her early 70's.
I know of someone who used aggressive nutrition and alternative medicine to reverse antibiotic resistant PA in her son. (PA is a serious infection that people with CF often get.) I know of someone who went to a different doctor and was given an effective protocol for wiping out MRSA. I know of lots of people reading up on nutrition and making changes to their lives and seeing improvements that doctors tend to tell you "cannot happen".
When faced with a difficult problem, I generally do not listen to the majority of folks saying I should just give up because it's hopeless. Instead, I begin looking for examples of people who beat it and begin asking "HOW did they do that?" That approach has stood me in very good stead in the face of lots of difficulties, not just CF.
Peace. And congratulations on the birth of your baby.