Cade's November and March Clinic

I'm WAY behind in keeping up with how Cade is doing.  There really hasn't been much to report.  He had his 3 month checkups in November and March, both were great as usual.  He is small.  He's in low percentiles for height and weight compared to normal, nonCF kids his age (whatever "normal" is).  Comparing himself to himself though, he is growing right along.  Luckily his Doptor Yewis (aka Dr. Lewis) is realistic and down-to-earth enough to realize Cade, more than likely, is not going to be a giant, given his genetics.  Plus, at his March checkup, we had just gotten over the nasty flu that had lasted around here for 3 weeks, so of course his weight was not going to be a huge jump from November. 

KU is working on getting any and all CF clinical trials they can.  6 is the youngest a patient can be to even begin to be considered for any trial meds.  We don't know which meds Cade will be eligible for, if any.  One of his CF mutations is the most common, which is great.  The other one is what worries me.  It's a rare one and not much is known about it.  He was person #40 to be documented with the rare gene and only the 29th person to have his CF genetic combination.  We did find out that once he is able to start taking the "super, wonder, cure drugs" he will still have to do treatments and take meds.  Basically the wonder drugs are supposed to halt the progression of CF. 

He has, for the most part, given up hiding his enzymes and has started just plain ol' not taking them.  He has also started not eating much.  Picky eater or hard headed little boy?  I'm not sure.  Probably depends on the day.  He does like French fries, cold pizza and Ensure.  Treatments are not his favorite time of the day.  30 minutes is a long time when there are a million other things he could be doing. 

Cade is 2 months away from graduating from pre-school.  I have to admit, it is going to be lonely and quiet not having him at home with me all the time when he starts Kindergarten.  I have been asked if I will go back to work when he starts school.  I don't know.  I am so thankful that we have been fortunate enough for me to be able to stay home with him.