Annie's CDC Appointment

I spent today at the hospital with Annie from 7:30am til 3:00pm for her CDC appointment.  That's when we meet with nearly all her specialist in just one day.  It makes for a long day, but it's better than making so many individual trips up to the hospital throughout the year.

We saw 11 specialists today including her neurologist, pulmonologist, developmental pediatrician, urologist, orthotist, physical therapist, occupational therapist, social worker, infectious disease doctor, dietician, and metabolic diseases doctor.  The specialists we don't get to see at CDC are her ophthalmologist, and gastroenterologist.

Earlier in July she had a half day of annual testing at the hospital in preparation for this CDC appointment. And so at this appointment we were able to get results from those tests.  I won't go in to detail about each visit with each specialist, but here are just a few highlights...

Annie had her annual urological testing including a renal sonogram and CMG test.  The cyst in her kidney is remaining unchanged, although it does show some calcification on it which can indicated the possibility of it developing into a tumor, so they'll continue to monitor that each year.  Her CMG test came back great with normal-for-her bladder pressures that are safe for her kidneys.  However, her urine had a high PH but no signs of infection, so we'll get that checked later, but they suspect that just a cause of her calcium supplement.

Annie had her annual Dexa bone scan which showed a slight increase in bone density from last year!  They were concerned about her osteoporosis last year and wanted to start her on IV infusions that would help strengthen her bones, but since she was scheduled for her spinal fusion, she wasn't able to have them.  Now, her bone density is still lower than it should be, but not so low that they are overly concerned.  Also, since there's a chance she will need more surgery on her spine next spring, we opted to again pass on IV treatment for osteoporosis.

Annie's back is continuing to be just fine, however, she still has 6 months of antibiotic treatment left.  But she is tolerating her treatment now much better than her IV treatment she had for the first 3 months.  So we just continue on and see what happens in February when she goes off the antibiotics.  If the infection returns, she will then need surgery to remove all the hardware from her back.

Our pulmonologist is getting us hooked up with a new C-PAP machine for Annie that has a variable pressure setting so when it senses Annie is obstructing, it will deliver a stronger blast to overcome it and then back down to her normal pressure setting.  I'm excited to try it on her and see how it improves her sleep, because she continues to have some breakthrough apnea on her current C-PAP machine.

Our occupational therapist again talked to us about getting a lift for Annie in our home to help with transfers.  Annie is 66 lbs now, but Justin and I are fully capable and comfortable lifting Annie ourselves.  We tried a hoyer lift for a week once and it was awful--huge and cumbersome.  So we explored ceiling lift options, but Annie's vaulted ceiling and ceiling fan create challenges there.  We should start looking at it more, but for now, we don't feel like it's necessary.  However, we just lost our home health nurse and are having a hard time finding a new one.  We think that maybe if we had a lift, we might open the doors to more nurses that could care for Annie.

Anyway, there's a lot more that was talked about with Annie's various specialists, but those are just some highlights.  We feel blessed that she's so happy now and generally in such good health.