Here's the scoop . . .

Most of you reading this will already know what I'm about to tell you. About a week after Camden was born we were told that his newborn screening test came back positive for Cystic Fibrosis. CF affects digestion and lung function.

We know pretty much no one knows what Cystic Fibrosis is so that's one reason we want to not be secretive about his condition. We want people to know about Cystic Fibrosis. The more attention this condition gets the better chance they have of developing a cure. Yes, we will be hitting all of you up for donations when we do fund raising events such as Great Strides. If any of you would like to walk with us on May 3rd, you can sign up on Chelsey's walk page (you can donate there, too).

You can find out more about what Cystic Fibrosis is at the Cystic Fibrosis Foundation website. People often know that we're headed to the doctor's office for an appointment and sometimes we are tired afterward as there is a lot to absorb. Sometimes there will be disappointing news. Sometimes it will be good news. We'll post updates here on the blog so you can all keep up on the latest news every time we have an appointment.

Right now he's doing pretty well. Since weight seems to be tied to lung function, we're working on getting that up to the 50th percentile.

He's on a lot of medications which means more work for us. It is frustrating giving him all the meds but we think about it this way: We're really hoping some day there is a cure or a single pill you take daily to undo all the effects of the disorder. Until then, these treatments are the next best thing. These are the things we do to give him a normal life. Speaking of normal, that's the goal. This is a condition that affects his digestion and respiration. With the treatments the hope is that he'll be pretty much normal most of the time and do everything we expected him to do. Sorry buddy, SCUBA diving is out because it is hard on your lungs but pretty much everything else is okay.

People are probably curious as to what we do for him. Here's the quick run-down so far. He takes four pills of enzymes - mixed with apple sauce - before every meal to help digest his food. We also give him a med for acid reflux twice a day. When he eats from the bottle, we add formula to the milk to help him get more calories and rice cereal to help with the acid reflux. Twice a day he also uses a nebulizer (like kids who have asthma) so he can get an anti-inflammatory and a bronchodilator into his lungs. After that, we so BD's (Bronchial Drainage therapy) which involves tapping him on the chest, side, and back while laying him in different positions. When he gets bigger, he'll be able to wear a vest that will do this for him. We also give him a liquid vitamin once a day. That's it for now. These are the things that will keep him healthy. There are some other things we'll probably have to do whenever he gets a respiratory infection but for now we're just trying to avoid him getting sick as much as possible. That will be interesting when he goes to school in a few years!

We're holding up pretty well. It is all very tiring and unexpected, but we're hopeful. We're really fortunate to have supportive family, friends, neighbors and employers, which helps us a lot! He's the sweetest little guy and we look forward to many adventures in the years ahead.

~Kirk and Chelsey