sixty five roses

Colin, Rebecca and I arrived home from Levine Children's Hospital on Monday afternoon and got started right away on laying our schedule over the next few days: full of Albuterol treatments, medicine giving and feeding schedules with new precautions to counteract Colin's reflux. It was a lot, but we were ready.

After twenty-four hours at home, Colin was back to his pediatrician for a follow-up appointment, where the doctor recommended he be tested for cytic fibrosis. Time out.

Now, at the hospital, the attending doctor had mentioned CF, as we now know it, but only as something they would have tested for if he had been sick for a month and still not getting any better. This had only been two weeks, a long time, but still not so long as to still have some lingering congestion, in a baby nonetheless. But after looking at Colin's growth chart and all of the respiratory issues going on with the cold and pneumonia, she said it couldn't hurt. Gulp.

This morning Colin was back at Levine for the test and around 1:30 Rebecca called me with the results. Colin was positive for cystic fibrosis, or the moniker that it has come to have: sixty five roses. Big Gulp.

So what does this mean? What is cystic fibrosis exactly? Isn't it that crippling joint disease? 

According to the Cystic Fibrosis Foundation:

"Cystic fibrosis is an inherited chronic disease that affects the lungs and digestive system of about 30,000 children and adults in the United States (70,000 worldwide). A defective gene and its protein product cause the body to produce unusually thick, sticky mucus that:

- clogs the lungs and leads to life-threatening lung infections; and

- obstructs the pancreas and stops natural enzymes from helping the body break down and absorb food."

Scary? Yes. Crazy? Yes. Will we make it through? Yes. Friday we will meet with a pulmonologist who will go over a ton of information about the disease and give us an opportunity to ask any questions we might have. From there we will schedule the second test and at the same appointment go ahead and test his body to see what type of CF he does in fact have. The information learned from that test will help us determine what combination of treatments Colin will need.

Needless to say, this week has been insane, but we are up for the challenge that is before us. Of course, a part of us wants to be able to raise our son without having to give him special treatments, or give him medicines with every meal, or take extra precautions when he is going to be exposed to people who are sick, but the reality is that our son has cystic fibrosis and we are ready to do what we need to do.

Tonight, when I came into the house from work, I looked at Colin and he smiled back and gave a little laugh, and all I could about was, there's my son, the same as he's always been. The reality is, that is true. Nothing has changed about Colin, only the information, the knowledge, we have.

I love him so much and while I know there are challenges before us, I am more excited than ever to see the man that my son will become.

If I may make one request: please pray. For Colin, for our own abilities, for our emotions, and for our sanity through all of this. Thank you.