In the sensory system post, we mentioned that Camila has nutritional and feeding challenges. In collaboration with her Occupational Therapists (OT), Nutritionist, and Speech-Language Pathologist (SLP) who specializes in feeding development, Camila receives two-three hours a week of feeding therapy. We also complete about three hours a day of home programming to address her nutritional and feeding needs. 

 

Camila generally has a poor relationship with food. Due to her severe silent reflux, she associated her bottle and formula as something that would cause her pain. That led to feeding aversions, disrupted feeding patterns, poor weight gain, and persistent dehydration risks. Since this continued for quite some time before it was properly managed, this became quite traumatic. The sole source of her nutrition, to keep her healthy and strong, was the very thing she feared most. This fear and stress response was further reinforced at 6 months old when her reflux returned. She was still on medication and amino acid-based formula, but due to growth, she needed an increase in dosage. It was a month wait until the new dose was fully in effect and led to the recurrence of feeding aversions, bottle rejections, and dehydration risks. Although “typical” development would allow for pureed food to be introduced at this age, due to Camila’s symptomatology, it was unsafe for her to begin solid food intake in the hopes of supplementing her nutritional needs. 

 

At 9 months old, it became developmentally appropriate and safe for Camila to be introduced to solid food. What we learned over the months that followed was that solid food feedings would require her entire sensory system to be activated, to maintain body posture and control, and body awareness. As you may recall from our prior posts, Camila experiences challenges developing all of these skills. As a result, she would initially become quite distressed when being placed in her positional high chair. Overtime, she developed a positive relationship with sitting in her high chair, although soon developed significant sensory dysregulation impacting the initiation and continuation of meal consumption. 

 

Camila continues to experience a stress response with formula and sensory dysregulation with solid food. Her primary source of nutrition continues to be amino-acid based formula, supplementing with smooth pureed food as neither on their own would meet her nutritional needs. We continue to experience formula and solid food rejection, have intermittent days of dehydration risks, and at her baseline we suspect she has a reduced appetite. Our hope is that one day Camila associates food with fun, regardless of what form of food she consumes. 
 

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We hope that the information we’ve shared the last few days provides a window into Camila’s needs and care. Each day we continue to meet her where she is at, moment to moment. We will do everything within our power to give Camila the best life possible and maintain a foundation of safety, comfort, and consistency. We continue to advocate for her needs, until she has a voice to express her needs independently. Most of all, we will continue to provide her love without condition or expectation. We love her just the way she is and whomever she becomes. 

Thank you for loving and caring for our family! We look forward to providing updates along this journey!