As you may recall from prior updates, Camila has a significant history of nutritional insufficiency and feeding challenges. The primary source of her nutrition is currently amino-acid-based formula, as she minimally consumes solid food. Unfortunately, formula on its own inconsistently meets her nutritional needs and she has recently both plateaued and fallen off her growth curve for weight. 

 

Camila has a wonderful and highly involved treatment team. They have been providing Camila therapy 3x/week to help support her feeding journey. That team consists of a Pediatric Dietitian, Pediatric Speech-Language Pathologist, and Pediatric Occupational Therapist. They stand out in their disciplines among the best feeding and nutrition pediatric providers in the area and we feel so grateful for their expertise. It is because of their commitment and collaboration, Camila has made the progress she has in the previous 10 months. 

 

Camila’s feeding challenges are likely rooted in an overresponsive/underresponsive sensory system leading to sensory-based avoidance, fear of painful reflux, and reduced interest in food. This is not to be confused with picky or selective eating. For Camila, feeding is hugely connected to safety and she can only take on the challenge of consuming food (formula or solid food) when every element is just right. Hunger will not override safety. 

 

Over the last several months, we’ve had ongoing discussions among her treatment team regarding next steps in Camila’s care. We want Camila to feel supported, safe and healthy. As therapeutic interventions are no longer sufficiently addressing her nutritional needs and she is at risk for failure to thrive, we have made the decision for Camila to receive a gastrostomy tube (g-tube). This involves a surgical procedure in which a small tube is placed through the abdomen directly into the stomach. The g-tube is used to provide nutrition, fluids and medication for children who are unable to eat or drink enough by mouth. 

 

The g-tube will not prevent Camila from developing her oral motor skills or feeding by mouth. It will be there to ensure she receives enough nutrition while we work on her goals. We think of it as a safety net, taking the pressure off of all of us so she can focus on improving her relationship with food, without the stress of needing to get all her calories by mouth. 

 

 

 

In many ways, being caregivers is incredibly challenging. That challenge intensifies when you need to make difficult medical and safety decisions for your child. In our experience, that weight can feel overwhelming and all consuming. We have to not only fully understand the unique intricacies and needs of our child, but also understand the opinions and medical suggestions from the entirety of her treatment team. Then make what we hope are the best decisions for Camila. It can leave us questioning every step: Will this be the right decision? Could it lead to more harm? Should we wait until she is 2-years-old? Should we have made this decision sooner? 

 

What helps us is the reminder that, as Camila’s parents, we are the leading experts on our child. There is no one better equipped to make these decisions than us. We have consulted for months, done the research, and considered every angle. We are the most qualified people to navigate these decisions. That alone brings us comfort and keeps us grounded. 

 

 

 

Camila’s surgery should be scheduled in the coming weeks. She will have a couple diagnostic tests to complete prior to scheduling to rule out conditions that may be contributing to her feeding challenges (i.e., Eosinophilic Esophagitis, Hiatal Hernia, Esophageal Dysmotility, Malrotation). Diagnostic clarity will also help with surgical planning, should any repair be needed in addition to surgical placement of the g-tube. 

 

Once we schedule her surgery, we will post another update with that information as well as a new support request that we would value during those first few weeks post-surgery. 

 

In the meantime, we are helping Camila understand and prepare for what is to come. Teaching her about feeding pumps/bolus feedings/gravity feedings with miniature toy medical devices, sewing g-tube buttons on stuffed animals, and playing with magnets of children with feeding tubes. We talk about how Camila will soon have an extra belly button to fill her tummy and help her feel strong. We read a social story created by her Pediatric Occupational Therapist to explain in easy to understand terms what to expect on surgery day. We read books such as Going to Have Surgery, Getting Ready for My Surgery, A Visit to The Sesame Street Hospital, and Bodies Are Cool. We listen, sing and dance along to “I Love My Body” by Mother Moon. We repeat Camila’s affirmations throughout the day. 

 

We hope that discussing this big topic combined with play will help prepare and support her during this feeding transition. We also recognize we are doing so much more. If we have one job with raising our disabled daughter, it is to teach her the power of self-love. By celebrating every part of her, we are teaching her that regardless of what challenges the world brings, she has the most powerful tool of all. To love herself opens the door for self-advocacy and self- acceptance. If we make it our life’s mission to give her this, we have done our job. 

 

Thank you for your ongoing support and we look forward to updating you all soon! 

 

With love, 

The Weilnhammer Family