It’s hard to believe that the boy standing before me today will only have vague memories of some of the hardest times in his life. A boy who is now able to play baseball without slowing down. A boy who can eat and drink whatever he wants. A boy who is now able to talk and be understood by everyone.
Cason came into my life at 4-months of age and his mother was only 19-years old. I had an excellent mentor for pediatric feeding therapy and was ready to take on a case of my own. I can remember nervously thumbing through the case history report moments before their scheduled appointment time. Nasogastric (NG) tube, premature, intubated, cricoid cartilage split surgery, Ventricular Septal Defect (VSD) and several medications were all provided in the physician’s report. I wasn’t sure if there was more to his story, so I was preparing myself for a long evaluation making sure to fully educate his mother on what she needed to do for the success of his therapy…little did I know.
Once settled in my therapy room, I was quickly in awe of both Cason and his mother. Despite his medical history, Cason was alert and physically looked healthy. He was no more than 8-pounds (if that) and had a tube taped to the side of his face running through is nose. His mother was able to recite every detail of her pregnancy and his birth history listing all failed attempts with feeding and swallow studies. The nerves from both the mother and I settled pretty quickly and by the end of the assessment I had him drinking from a bottle!
Over the next several months, I settled in a new position working closer to home. I never expected to see Cason again since my new position was about an hour away from the previous facility. Part of my new position was to collaborate with Early Steps, our state birth to three program. In the spring of 2010, I received a phone call from our local Early Steps coordinator who had a new feeding referral to send me. It was Cason!
Seeing Cason and his mother again was like seeing old friends who are able to pick up right where they left off. Due to a whirlwind of doctor appointments, and trips to his heart team in Gainesville, Cason had not had any feeding intervention since our last encounter. In fact, he underwent another swallow study where it was recommended he needed to be NPO (nothing by mouth). We were starting all over again and I decided to recommend an intense, yet successful, tube weaning program. Over the next several weeks, Cason’s tube feeding was strategically, yet drastically reduced under the remote supervision of the Graz Tube Weaning Program. My job was to introduce new foods in a stress free, but playful way using high calorie foods, continue to work on his oral motor strength and coordination for chewing and triggering a timely swallow reflex and monitor for any signs of aspiration/choking. Therapy consisted of numerous play picnics and restaurant outings and within a few short weeks we finally had his first food, ranch dressing! He then went on to eat salsa, chocolate, yogurt, french fries and much much more! He began to eat soft meats, fruits and and his first vegetable, green beans. During this time, the team at the Graz Tube Weaning Program recommended a slow weaning from his tube feeding. First during the day and then dropping his night feeds. Eight weeks and two days later, he was tube free!!
Cason’s journey did not end there. He was now able to eat on his own, but still unable to play like a typical toddler. His heart was not ready for such an energetic, full of life little boy. He napped often, fatigued quickly during play and was unable to regulate his body temperature.
On October 31, 2011, Cason would undergo heart surgery for the VSD and Partial Anomalous Pulmonary Venous Return (PAPVR), which was not known when I first met him. Remarkably, he bounced back within a few weeks and then some! His energy level was now that of a typical two year old and we were in for a personality like no other!
Now that his body had healed, Cason needed to catch up on his language and speech skills. Now this was the fun stuff!
Cason would get to thrive through games/activities and not even know he was working. At first, he was able to produce simple sounds to request items and would often point or show you what he wanted, but did not have any true words. Like all his other hurdles, Cason exceeded all expectations and by the age of five, he no longer needed language intervention and has only a few articulation (sound errors) skills to master (which I think are cute and don’t want to fix!)
Cason is now a larger than life, seven year old boy. His smile and sense of humor can cure any mood and he has an everlasting energy level that his heart can surely handle. I can’t imagine my life without Cason and his family. Katreena, thank you for trusting me with your child, your friendship and allowing me to be apart of Cason’s journey.
-A journey of a thousand miles begins with a simple step.