Eli has yet another video swallow study (VSS) this morning. I have lost count on how many this makes for our little man but the number is getting way up there. He did great and Al and I couldn't be more proud of him. Thankfully we do not have to go back to thickening everything again but modifications are necessary to help protect Eli's airway from aspiration. If someone would have told me that almost three years into this micropreemie journey we would STILL be dealing with aspiration and dysphagia, I wouldn't have believed it. We have come a l-o-n-g way though.
This morning Eli was well behaved and cooperative for once and followed directions to the letter. We should have taken the video camera :) With a sippy cup including a valve, Eli was safe on thin liquids!!! Unfortunately he demonstrated extremely large boluses, deep laryngeal penetration, and high risk for aspiration when drinking out of an open cup or sippy with no valve. Eli loves being a big boy and using open cups but everyone agreed that he is no longer allowed to touch the things and must go back to "baby cups" as he calls them. So, Al and I are off to shop for some new sippy cups with valves to replace his super cool big boy cups that match all of his plate sets. After his cyanotic episode last Wednesday from aspirating Starbucks' Apple Spice, we aren't taking any chances. I never want to see Eli trying to imitate a smurf again!!
As for the pocketing of food and choking on solids, the OT and speech therapist recommended Eli start back with feeding therapy at school. They said that because he is hypotonic (low tone) in his mouth and most of his trunk that he doesn't realize there is that much food in his mouth or what to do with it. They also think there may be some sensory issues involved as well. So, back to the drawing table to get Eli eating meats and breads safely. It will all be worth it though. He has already come so far with his tube feeds and therapy. Someday we may just get rid of that MIC-key button after all!
Al and I are so proud of our little man. He is chugging along and taking baby steps to get there the entire time charming the lead vents off the radiologists, therapists, and doctors. Boy are we in trouble....