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.

2 thoughts on “Hiding from the Paparazzi

  1. Love the photos. Looks like one of her first words might be “dah-ling”. Or after all these tests, more like “I vahnt to be alone”. By the way, nice job matching her clothes to the stroller. That’s one stylin’ baby.

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