We are still recuperating from a four hour marathon with professionals yesterday.
It was C.'s second annual assessment at a local rehabilitative center, health-fund-subsidized. The team was comprised of a neurologist, an orthopedist, an x-ray technician, a physiotherapist, an occupational therapist and a social worker. We skipped the latter because we had another appointment to make (my husband's tooth needed urgent attention.).
It was an intensive experience with a mixed bag of news.
One happy item: C.'s scoliosis still doesn't warrant intervention, no surgery and not even a brace.
One moderately happy item: her foot brace is still acceptable but might need replacement and her foot might need surgery at some future stage (its sole can't stay on the ground).
The rest was just a rehashing of the same disheartening reality: C. is minimally functional and there's no hope for improvement. The OT left us with the traditional wish you offer the desperate in our country: "May you have the strength" (i.e. to cope).
The neurologist told us her bronchial pneumonia is directly related to her scoliosis: her left side which is somewhat curved compresses her left lung. And, lo and behold, her bronchial pneumonia only affected her Left Lower Lobe. Isn't that neat?
The neurologist also recommended seeing C.'s neurologist to inquire about tweaking her meds for better seizure control (she's a five-to-seven/day)
The physiotherapist, who is, among other things, an expert in chest physio, told us that all that patting I was doing wasn't effective. These days "motion" is all the rage for releasing chest congestion. The cutting-edge technique she taught us is in the photo at the top of this post. (The point is to nudge the torso back and forth for around twenty minutes.)
C. seems to be less sturdy and upright since we switched from azethromycin to augmentin. I have a hunch this antibiotic doesn't agree with her. But since the deterioration is subtle, I'm hesitant to report it to her pediatrician. Just looking forward to finishing the course and seeing C. stand upright again.
I've resolved to try and keep C. standing/walking for longer each day. Everything I've read lately about chest infections in our disabled children emphasizes how critical that is for respiratory health.