Today we saw Lillian's pulmonologist for a routine check up. He was pleased with her progress. We are going to continue her inhaled antibiotics because this is as healthy as she has ever been. She has little breakthroughs of illness but nothing compared to where we were prior to starting the gent. So she gets that treatment twice a day inhaled via nebs every other month and she's on an inhaled steroid every month all the time. Forever. I look forward to being able to get out an about a bit more since flu season is about to pass us by, but I confess...keeping her out of large organized crowds of people and children sure makes her healthy. Like a semi bubble world. He does want to repeat a chest ct next year to evaluate her bronchiectasis. We have to keep an eye on that. She will have to have general anesthesia for that. She does seem to be having some decreased activity level...we find her resting herself on the couch. Unusual since that used to be sign of sickness coming on. It dawned on me, though, as we discussed it that it's likely a sign of decreased pulmonary function.(a tad worrisome, but I will not dwell there) I may also have mentioned that she has been making this odd noise for at least six months now, and I can't remember the name he gave it, but he didn't mention that we should be concerned.
She has recently seemed a even more fearful of lots of things, including high wind. She's afraid to be in my room alone and any running vehicle terrifies her.
We are praying about our home situation as we feel we may be asked to move soon. Prayers in that arena would be appreciated. I'd love to update a little more, but a little brother is hungry and he's letting me know. Thank you for continued prayers for our girl and family.