04/10/2026
Update: The ENT doctor had to use a camera in through Allie’s nose and down her throat I had to bear hug her 😩 so he could actually preform the test, her vocal chords are moving properly and he said it seems like she’s having a normal amount of secretions so that was good information to know! She does have an enlarged tongue but that is common with Sanfilippo Syndrome. Our next steps will be at the Janeway for a sleep study because of possible sleep apnea and a swallow study to see how she is handling different thickness of liquids and consistencies of food but it’s inevitable eventually a feeding tube will need to be placed.
