I had searched the net and found so little. Well that has changed :). The other night I was in a chat room with some wonderful women. We laughed and laughed and it did my heart good! I found a few new blogs and am so appreciative of the people out there willing to share their experience.
Because I so appreciate the sharing of information I will do my best to occasionally update the situation here in hopes it will help someone else like others have me.
This is my cute son Mike :) He is 25 years old and living with CF. This is our everyday. Here he is hooked up to the "Vest" that helps him be independent and do therapy on his own. He does this at least twice a day along with the neubs you see hanging from his mouth. This $16,000 piece of equipment has been a tremendous blessing in our lives! The tubes from the compressor attach to the black "vest" and shake the mucus from his lungs to help keep them clear :)
This is also Mike.
And when he's not doing that (because it's too cold) then he's probably doing this:
He's a pretty good dancer and instructor. He works hard at it!
Now I didn't get the name Pollyanna for nothing but I also believe you should keep it REAL! If I didn't I would feel like that would be denying Mike's experience. So here's to keeping it real! More to come.
Remember - you don't die with CF . . . you live with CF :)
And one other thing - for you newly diagnosed families, CF is much different today than it was 25 years ago and your journey will be quite different. There have been so many advances in medical technology - Praise God.
Blessings! Email us if you have questions :)
1 comment:
Wow-what a great post. Best one I read all week. Thanks for sharing.
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