The week of July 13th Bertrand will be evaluated (travel and lodging expenses paid) at the National Institutes for Health (NIH) in Bethesda, Maryland by Dr. Constantine A. Stratakis, M.D. D.Sc. and his team with the Section on Genetics and Endocrinology (SEGEN). Dr. Stratakis specializes in genetics AND endocrinology. He is an expert on Allgrove Syndrome. Even if Bertrand doesn't present with that particular genetic disorder, Dr. S. may be able to point us in the correct genetic direction or to the appropriate expert at the NIH.
Today we also had a fantastic session with Bertrand's speech pathologist at Shriners Hospital, Laura. We covered Bertrand's velopharyngeal inadequacy (VPI). The velopharyngeal mechanism is responsible for directing the transmission of sound energy and air pressure in both the oral cavity and the nasal cavity. When this mechanism is impaired in some way, the valve does not fully close, and a condition known as 'velopharyngeal insufficiency' can develop. VPI can either be congenital or acquired later in life.
As a result of VPI, speech and feeding issues present themselves. Speech-wise all we can do now is not encourage compensatory vocalizations. In the future we'll attempt to strengthen his palate, thereby possibly overcoming VPI without surgery. But, this requires Bertrand's cooperation. Feeding-wise B appears to be fine, but we should speak with his doctors about increasing his acid reflux medication. Once feeding is no longer painful, Bertrand will be more likely to engage in the activity willingly. :)
Is it wrong to be so excited that you are going to be going to the NIH that week?!!! Bertrand and Hannah are going to be able to get together!
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