Ditched One, Added Another

Managing the care for a child that was born a micro-preemie can be complicated. Jax has 13 specialists that he sees regularly! That’s a lot to coordinate and keep track of. I’m thankful that I have experience with organizing events and teams, because that knowledge definitely comes in handy when I’m trying to piece everything together.

Good news is that Jax ditched one of his specialists this week! The ENT doctor (who did Jax’s ear tubes, bronchoscopy, and found the bronchomalacia and cysts on his trachea) told us “Well, I have good news and bad news. The good news is that Jax’s hearing and ears are perfect. The bad news is that you don’t ever get to see me again.” He’s funny like that. Then, he gave me a high-five and said “Great job, mom. He looks like a million bucks.” It’s validating to get that kind of feedback from the doctor’s that I respect so much.

Jax was just as excited as I was to say goodbye to one of his specialists this week!
Jax was just as excited as I was to say goodbye to one of his specialists this week!

Jax passed his hearing test with flying colors. That’s great! Except we were secretly hoping that the reason he was not being able to follow directions or listen well in large groups or new environments was because he couldn’t hear with extra background noise. Now we have even more evidence that he is struggling with sensory processing issues, specifically audio and visual input.

Jax was referred to a Developmental Pediatrician. Many micro-preemies see developmental pediatricians right from the start. However, we were followed very closely with our schools’ Birth to Three Early Intervention team, so we did not need a DevPed to help us keep an eye on the “big picture.”

Now that Jax has graduated from Early Intervention, we need more help making sure that we aren’t missing anything as far as a diagnosis is concerned. The DevPed will communicate regularly with Jax’s teachers and his occupational therapists so everyone is on the same page.

In a way, I’m actually looking forward to adding a new specialist to the list at this point. (Weird, I know.) I will appreciate the information and resources they can (hopefully) provide going forward.