We had another one of Kendell's routine visits down to Primary Children's Cystic Fibrosis clinic this week. We're happy to report that we had another great visit! She gained almost 3 pounds again in 3 months and looked great! Her lungs sounded clear and her PFT numbers were once again awesome! speaking of PFT's, today I realized just how blessed we really are to have her so healthy. There is a young women with CF who is in the hospital right now getting a cleanout, which consists of I.V. antibiotics and all day breathing treatments). She reported that she blew a 18 on her test, an 18! That means only 18% of her lungs are working. Kendell is always around 130. At this last appointment Kelly pointed out that although they are still high numbers, they seemed to be slowly going down over the last year or so, but it seems that this last visit they came back up a bit which we are so happy about! Although hearing about other CF patients makes us realize our blessing, it is honestly depressing too. I had a very heavy heart, when I read the comment about her hospital stay and know that anything can happen at any time....
Back to Kendell's visit:
We always have to wait for certain test results, (like her sputum to test for infection and some blood work we had to do to check her enzyme levels again) which we don't have back at this time, but we don't anticipate any issues. Her enzyme levels seem to be elevated most of the time which can mean a number of things, but is obviously not normal and needs to be controlled, so we did need to get those checked. Last time she had an ultrasound there was a little damage to the liver, which could explain the elevated numbers, or it could also be the dose of her medication which can be easily adjusted. We'll see what they say....She does have to have a follow up ultrasound next appointment, which is sooner than her yearly check so that makes me think it is something they are worried enough and are wanting to monitor levels and get it figured out so no permanent damage takes place to her liver, lungs and other organs.
In other news, we are gearing up to participate in the annual fundraising events that take place via the foundation. "Team Kendell" has such great support and we sure appreciate all our sponsors, our friends and family that help raise funds for our team, donate themselves and come participate in the events. It truly means the world to us! I know everyone has a cause that is personal to them, but we appreciate the time people put in for our cause. We are going to find a cure! Kendell has participated in a study for the past few years, where they draw extra blood to study and the nurse over the study said they are finding out so much from the study and of course they are in the process of trials for the drug Kalydeco which is VERY promising! We are excited to see what happens and pray that it happens soon.
