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Friday, October 19th, 2017

The ENT used a scope to check around to see what might be causing the aspiration issue.  Pyper had to be intubated during the procedure. The ENT scope procedure did not result in them seeing a hole anywhere to identify where she is aspirating, which was good and bad.  Good there was no hole, bad because they still do not know where the aspiration is happening. They did find a deep groove near her vocal cords, and used some gel to fill in the gap. This will last 6-8 months or longer, and may help with her breathing and aspiration, time will tell. While in there, the ENT clipped some vocal folds, as they might have been causing an obstruction.

With all of the above issues, combined with her respiratory issue and continued need for oxygen, the ENT requested some genetic testing, as some of these are direct symptoms of 22Q11.2 deletion (DiGeorge Syndrome), which is a very rare, incurable disorder caused by the deletion of a small piece of chromosome 22 at location q11.2. They have requested the genetic department to fast track the tests and schedule an appointment once they receive the results.  We are still waiting.

The ENT also ordered an MRI to check and see if there were any neurological issues with her swallowing problems.

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