In addition to all of our complicated medical issues, Stanton also has really low muscle tone in his face. This combination has complicated our efforts to obtain a firm diagnosis for Stanton and understand what the underlying issue really is. Is the low facial tone contributing to his inability to swallow or is the throat damage and eosinophilic responses he exhibits the smoking gun? I flip-fllp between these ideas throughout the day. Some days it’s really obvious and others, it’s cloudy. We are treating Stanton’s gastro-intestinal problems as if it’s eosinophilic esophagitis until we know otherwise. He really is responding well to this. My car still has a bag full of extra clothes for those unexpected, “just in case” puking in public moments, but, I haven’t needed them for a couple of weeks now. This is HUGE progress!
Stanton’s low facial tone has manifested itself in many forms. As a baby, I noticed his left eye crossing. The bigger he got, the more frequent his eye would turn in. By the time we saw an ophthalmologist, Stanton was 10 months old. The ophthalmologist quickly diagnosed Stanton with esotropia. Because of his age, the ophthalmologist said Stanton had a 95% chance of regaining his vision and scheduled surgery for the following week. Just six months post surgery, Stanton’s chart stated “normal vision.” We only have to go back to the ophthalmologist once a year!
Pre-surgery
"Eye Patching" Pre Surgery
Post Surgery
3-months post surgery
From day one, my little man has always presented with a protruding tongue. This means that his tongue sits wide and fat on his bottom lip. He hardly ever has his mouth closed and really never keeps his tongue in his mouth. When Stanton drinks his bottle, his tongue sticks out even as he sucks. The protruding tongue has really complicated the feeding issues as well as severely impacted his expressive speech. That combined with the trauma of feeding has lead to some sensory issues on his face and in his mouth. Washing his face and brushing his teeth are sometimes impossible!
He receives speech therapy and occupational therapy each week. The therapists are both focusing on oral-motor and working on transitioning Stanton from a bottle to a cup, tongue muscle strengthening exercises, lip closure, chewing and biting, increasing his communication and decreasing the sensory defensiveness around his face. Yes, between doctors, testing, specialists and therapy, we stay on the road a lot! I am beginning to notice that my life revolves around the whim of the “experts.”
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