Had to laugh when I logged on here. Okay, was it really April when I started this???? Well to make a long story short, I was promoted to principal shortly after that and well let's just say life has been very busy.
So, Emily's PFTs have slowly declined from 126% in April to 105% in December. Now, don't get me wrong, I know that 105% is really good, I just have this mindset that if we can achieve 126%, then that is where we need to stay. In my heart I know that when a "cure" comes along it will make a difference in Emily's life, but it will not undo any damage that has already been done.
So, with today's report it wasn't the best, or the worst. We have done 3 weeks of bactrim--two week off--got sick again, 3 weeks of clindamycin, and still not where she typically is after a couple of rounds of antibiotics. So, we are going to do two more weeks of clindamycin and see what happens from there. Emily's weight has dropped to the 35%ile--so we are starting Scandishakes to get her some extra calories.
It was a long day up to UNC, as always, but well worth the drive for the care Emily receives. Hopefully we can get her back to where she can be in PFTs and weight in the next few weeks . . .