Hiding from the Paparazzi

If it's 7 a.m., Ilene and Charlotte (and 3x this week Philippe) must be headed to a medical appointment. Charlotte likes to go incognito.

A few brief updates:

Helmet: Charlotte's hot spots didn't go away after a full day out of the helmet, so we had to take her in again this morning to have Pat take a look at her skin and check the fitting. We think we have it right, so the helmet is back on.

Rehab swallow study: Charlotte went for a follow-up swallow study yesterday to ascertain whether or not she is still experiencing silent aspiration (having liquids go down her airway when she swallows). Basically, they mix barium with her food/formula and do a video x-ray while she eats. As I mentioned the last time we did this (8/2), it is one of the very coolest things I've ever seen, medically speaking. This is a picture of Charlotte's jaw and throat, in profile.

Unfortunately, the study was, in my opinion, flawed and not conclusive. Why? Because once again the CMH Radiology reception area screwed up--they neglected to alert the Speech Therapist that we were there (at 8 a.m.) and by the time I asked why we were waiting (8:45 a.m.) we were perilously close to Charlotte's nap time.

So, despite not having eaten since midnight, Charlotte sucked for a total o 1.20 minutes. She screamed and screamed. The therapist came to the conclusion that she is still aspirating and told us to go back to a slow nipple. Problem is, with a slow nipple and thickened fluids, she sucks and gets nothing.

I'm not convinced by this study and given that the therapist told me to come back in 2-3 weeks, I don't think she is either. Why not? 1) The exam was performed by a therapist who had not previously met Charlotte and I don't think she'd seen the previous tapes. And 2) She was screaming and crying throughout the test. I believe that would make anyone aspirate.

Charlotte was just glad to go home.