JonJon8320
New member
My son was just diagnosed with CF at six-weeks old. We keep pushing through, but it's just so overwhelming. We can add items to a routine, such as enzymes, vitamins, salt, breathing treatments or whatever they may throw at us. But I can't deal with not knowing if this will last months, years, or decades.
Is there any way to know what to expect or are the variables too great to even have an idea? He has two mutations, the Delta F508 and the G551D. We've bought HEPA filters for the house, and Germ-X in every room. I don't know if stuff like that will make a huge difference, but I can't imagine it'll hurt.
My wife will be staying home with him now, which will be a huge financial burden, but we'll find a way.
We're just lost, overwhelmed, and everything every other parent is by reading the posts in this forum. We will remain optimistic and hopeful, as we've raised over $5,000 for the CF Foundation in the last week already. But with all that optimism, I just want some realism and know what life will be like. Not just the good, but the bad. Could he get sick after just a few months and not pull through? Could that happen when he is 2 years old? 5? 10? 15? Will he outlive us?
I'm just rambling at this point, but it feels good to do so.
I appreciate the thoughts and comments.
- Jonathan
Is there any way to know what to expect or are the variables too great to even have an idea? He has two mutations, the Delta F508 and the G551D. We've bought HEPA filters for the house, and Germ-X in every room. I don't know if stuff like that will make a huge difference, but I can't imagine it'll hurt.
My wife will be staying home with him now, which will be a huge financial burden, but we'll find a way.
We're just lost, overwhelmed, and everything every other parent is by reading the posts in this forum. We will remain optimistic and hopeful, as we've raised over $5,000 for the CF Foundation in the last week already. But with all that optimism, I just want some realism and know what life will be like. Not just the good, but the bad. Could he get sick after just a few months and not pull through? Could that happen when he is 2 years old? 5? 10? 15? Will he outlive us?
I'm just rambling at this point, but it feels good to do so.
I appreciate the thoughts and comments.
- Jonathan