exhale

So if you’ve been following along, you know that we learned definitively a few weeks ago that Kid C has what has been classified as CRMS.  As I said in that post, they didn’t have a diagnosis for this until 2009, when the best minds in cystic fibrosis treatment came together to try and cobble together some recommendations for the kids who, through genetic testing and sweat results, weren’t ever likely to develop classic CF, but had more going on that just being carriers for the disease. It’s a huge umbrella, under which kids with no symptoms at all to those with greater incidences of respiratory issues or pancreatitis fall.

Today we went down to Children’s, which has some of the best CF specialists in the country, to meet with a doc and do some baseline testing. Kid C had a chest x-ray done, a throat swab, and a stool sample taken. We talked with the doctor for an hour, almost, although a lot of it was just more acknowledgement of the fact that we don’t know what we don’t know.

Science is amazing, miraculous, and what we’ve been able to uncover in a generation of kids is truly remarkable. Kid C sits now in a group of kids from which future treatments will be determined. He’s part of the research pool, as people a lot smarter than I try to get their arms around what exactly CRMS means, and what the different variables in terms of type of mutations can predict in terms of the level of symptoms someone with his diagnosis can expect to face in their lifetime.

What we do know is this: his chest x-rays were perfectly clear. He is gaining weight and growing like a boss. His color is great, his development is on track, and every indicator we have suggests a normal, healthy child, and we intend to do everything we can on our end to keep him that way. As the doc put it, there are a lot of children she sees that she loses sleep over, but our kid is not one of them.

We’ll go back in four months, to check back in before cold and flu season starts. We’ll need to keep a closer eye on him during those winter months, because he’s at greater risk for respiratory issues. We’ll go back on his birthday, again, and then, if he continues to remain asymptomatic, we’ll probably only have to go in for annual checkups as he ages. That’s our goal.

I was reminded again of how lucky we are, as the doctor described the regimen that families touched by classic CF have to go through. If you are praying for our kiddo, please pray for them, too. We are blessed, too, to have access to amazing doctors - truly, Children’s is a fabulous facility with incredible staff whose love and affection for and commitment to children shines - and the kind of insurance coverage that makes all of this possible without any sleepless nights spent worrying about how to pay for it. And what we learn with Kid C, as he grows, will help other parents and children who find themselves in that doctor’s office for a routine follow-up like we did, so that maybe the world that unfolds in front of them in those breath-stealing moments won’t be quite so scary.

That’s our goal, too. If you’ve read all the way through this, hey. Thanks. The light and love of your thoughts and prayers has surrounded us and kept us optimistic. If you have a buck or two to spare and want to support Matt as he rides to raise funds for cystic fibrosis research this fall, you can do so here, and we’d appreciate that too. There are advances in the fight against this disease every day, and with your help, we can keep adding years to all the kids who struggle with this on a daily basis. That’s the end game here, and we can’t accept anything less.