Wikipedia informs me that “deglutition” is the scientific word for swallowing. Huh. You learn something new every day.

We had an appointment with the feeding clinic at Bloorview earlier this week, which explains why I’m parsing Wikipedia entries on swallowing and dysphagia. You may remember that Gavin continues to suffer from slight dysphagia. (swallow difficulty.) His last hurdle is thin liquid. Although it is counter-intuitive, thin liquids like water or apple juice are actually the most difficult things to swallow with Gavin’s condition.

It has been awhile since we visited feeding clinic. Our last appointment there was last spring, and we have not done a repeat swallow study for a year. We have spent the last 10 months following the instructions of the feeding clinic team as best we can. Bean has continued to drink mostly beverages thickened with “magic powder,” with instructions to practice with thin liquids by the spoonful when we have time. Other tips included prompting him to roar like a lion after swallowing and to add carbonated water for that extra sensory input.

A year ago, Gavin had just begun eating again after 10 months of en-tubement. There were certain textures that posed problems for him, and he was just not used to the work that eating is. Happily, today he has no problems with eating and will munch on apples, nuts or rice crackers for snacks. His eating issues are more along the lines of refusing to eat leafy green vegetables, yet having an unlimited appetite for ice cream. Surprising for a three-year-old, no?

He has come a long way. Our appointment the other day was an informal swallow study which involved the speech pathologist listening to his swallow with a stethoscope placed on his neck. She felt that he did so well with a “nectar” consistency, (think pear or mango juice) that he can have these drinks freely, at any time! He also handled water pretty well but needed some thought and concentration to get it down easily. We will still “practice” with water at home while we  wait for the repeat video swallow study scheduled for June.

Bean’s Daddy and I have both felt for awhile that things were looking up in this department. We have been allowing Gav (on occasion) to have a conventional mango juice or smoothie, sans thickening agent. It is, frankly, a relief to be able to just buy a drink while out and not always be kicking yourself because you forgot the f****** magic powder at home. We must provide Gavin’s drinks for daycare, etc., and often have to turn around and head home because we forgot his drinks. Frustrating!

There are three major appointments coming up: MRI for sometime this month, (waiting for an appointment and I am in agony) ENT (finally!) at the end of May, and the swallow study towards the end of June. I am hoping that the swallow study will reveal that Gavin is no longer in danger of silent aspiration. I am hoping that the appointment with ENT will clarify what is happening with his vocal cord paresis, hearing loss, and constant runny nose.  I am hoping that the MRI of brain and spine will continue to show NED.

It’s a lot. But it’s always a lot. Today, I’m just happy to toast Bean’s success with a glass of mango juice. Cheers!


P.S. If there are any parents reading this who are struggling with their children’s swallow issues, and you have questions or thoughts you want to share – please don’t hesitate to contact me. I am totally open to hearing from you!

P.P.S. It has recently come to my attention that there are several companies marketing the “diet-tube” method of losing weight. Anyone vain enough and silly enough to use this diet in order to fit into her wedding dress should be marched to the town-square and pummeled with rotten tomatoes. NG tubes are for sick people. People who would give their left arm to be able to enjoy a nice plate of pasta and a salad.

And to the “doctors” who “medically supervise” these diets, SHAME.


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