CF is a TERRIBLE disease!

Not that ANY disease is good, but CF seems so unfair! Ty is coughing and coughing dispite his treatments. It may be because I let him get in the pool on Sunday. We did have cholorine in it, but perhaps it did not have enough time to saturate sufficiently. So, I feel guilty! Which is better...to keep him cooped up and isolated so his CF can lay more dormant, OR to allow him a bit more noraml life and risk infection? Even the CF Foundation does not have the answer!

He cannot play outside in the wind. He cannot play in the dust or in the garden. He cannot run and get overly heated. He cannot go nose to nose with an animal, or even sit in the same spot as the dog! He cannot play team sports, especially outside, but even inside, as if he has a cough, he will have to let his teammates down and sit on the sidelines. He cannot have a spontaneous snack, unless he has enzymes with him. (we keep them everywhere!) And sometimes he has to explain them to curious peers. He mostly won't though and just walks off with his head down, or pops them in his mouth and ignores the other children.

Ty is a fast runner. He loves gymnastics and building things. But he gets tired of his treatments. Often I find the mask of the SVN machine hanging from his chin rather than on his mouth. He will put it back up when told, but he scowls and pouts. The Vest that beats him is definitely NOT his favorite time of day and he will use every wile he has to delay the procedure. The "special attention" factor wore off long ago. He just wants to be normal like his brother. And his brother want to have enzymes!

CF results also in low weight and energy in spurts, not consistent. He has a doctor appointment this afternoon at the CF Foundation at Children's Hospital. They will put him through more tests and back on extreme treatments. He will bear it. It will mean about an hour more worth of treatment, both AM and PM, which will result in limited activities and outings. But he will bear it. He will do a craft while hooked up to the machines. He will watch TV and write his numbers and words. He will work on the computer. And he will long for the day when a cure is found and he can be normal for the first time in his life!