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Wow, so yesterday was Julia’s last day of a 28 day run of TOBI.  TOBI is a difficult thing for both of us, because it adds an extra hour or more to treatment time.  I am so glad that both Julia and I get an hour of our day back…for the next 28 days anyway.

On Monday Julia had her CF clinic visit.  She has these every three months and will have them for the rest of her life.  Julia is doing very well, but not as well as past visits.  Her weight gain has drastically slowed.  She fortunately did not loose any weight, but merely gained a couple of ounces.  Having chronic diarrhea for the past four weeks hasn’t helped things.  Yesterday was the first day that she had a half way normal looking poop.  Her stool sample results showed that she no longer has c. diff., which is fantastic news.  Hopefully, she’ll start packing on the pounds now that she is out of the woods on that one.  It was disappointing however to get a yellow instead of a green on weight and body mass index.  At least it wasn’t a red.

We are still waiting for results on Julia’s throat culture.  That will tell us if she still is growing pseudomonas or not.  We are all crossing our fingers that it will be negative.  If it comes back positive then it will be another round of TOBI and perhaps some other oral antibiotic that may devastate her stomach.  We are waiting with much anticipation for the final results.

To step back to Julia’s clinic visit for a moment…after her chest x-ray was finished, Julia and I both looked at the computer screen with the picture of her lungs on it.  For the most part, Julia’s past chest x-rays looked pretty transparent.  I did notice on Julia’s picture that there were some tiny white spots located close to her large airway.  When the nurse called yesterday and said that there has been a change in Julia’s chest x-ray…meaning that it is different from the one they took last year at her annual visit…I knew that it must have something to do with those little white spots.  We have to go in for another film to be taken because they needed a better inhale to get a good look at things.  The doctor isn’t sure what it is and needs a better picture to be able to comment on things.

This is hard information to hear.  It brings all of those things back that you don’t want to think about.  Cystic fibrosis causes damage to the lungs, lowering lung function.  That damage is permanent.  Once a part of your lung is damaged you can never get that back.  It is a disease that slowly takes your breath away…your life away.  Of course, I always jump to worse case scenario…oh my gosh…it’s damage.  We won’t know for sure until we can get a better x-ray and a better look at things.  We just have to wait and see on this one.

We are so blessed to have Julia and every day we get to spend with her is a great gift.  This is our normal.  It’s frustrating…so much time is spent trying to slow things down…stop the clock…but in reality we are merely buying time, not actually fixing the problem.  This is the reality and sometimes it’s hard to swallow.