Join us as we celebrate wins, big and small, for families facing PFD! Today, we celebrate the wins of Jax Mieras! Jax’s parents have attended Feeding Matters’ conferences and received support through the Power of Two program. His mother, Amber, now volunteers as a family coach in the Power of Two program.
Our PFD journey has, like many others, been full of hills and valleys. We have had growth, and regression, over the last 7 years. We are have learned to celebrate the successes, no matter how small, and honor where Jax and our family is in the journey. We have learned to be grateful for the support we have, for the medical assistance we have to help keep Jax healthy, all while trying to continue to grow as a family.
Jax received his first feeding tube at 4 months old and we held onto hope that he would be eating soon. First it was, after we got his GERD under control he would eat, then we were told that after his open heart surgery he would be eating. Then we were told that after his sister starting eating, he would start eating. We have learned to no longer think our experiences and journeys would be just like other children with PFD. Each case is so different and each child progresses on their own time.
Jax has gone to therapy for 7 years, we have participated in intensive programs and out-patient programs, and we are finally getting Jax more comfortable being around food and participating in the family meal experience. While he still has anxiety being around new foods and doesn’t want to bring a lot to his mouth, he has come leaps and bounds with wanting to sit with us at dinner and eat. (Although our meals usually involve prepping feeding tools, preferred and non-preferred foods, a task that we can use as a reward, and more). Jax also has started enjoying playing “kitchen” and making food with us.
Our journey has taught us that it isn’t just Jax’s PFD journey, but something that involves our entire family. His sister, Nayeli, is great at encouraging Jax and celebrating with us when we have a great meal. We celebrate things like Jax drinking water, eating and playing with food at school, and asking for our family to enjoy a meal at the table together. We are thankful to have family members that understand where we are, and therapists and teachers that help encourage Jax to continue with his growth.
From not being able to be near food, to enjoying condiments like syrup and ketchup, to being happy to lick a sucker, taking a sip of water while playing outside, to putting crumbs in his mouth, we are making progress….and Jax is happy. We do have difficult moments when trying new things or challenging Jax more, but he is getting more and more confident.
We know our journey will be a long one, that will most likely involve feeding tubes, therapies, tears and high-fives. But this is where we are….and while it is hard, it has shown us how strong our family, and out son is.
Thank you for letting us celebrate with you, Mieras Family!