Wednesday, January 24, 2018

It's Happening. The Trial Begins!

It has taken 9.5 yrs to get to this point, but we are HERE. I had Jax at Childrens Hospital on Tuesday for his yearly check in with the Rehab Clinic for his muscles, so we stopped in the Nutrition Clinic for a weight check since we cut his tube-feedings in half last November.

He gained (1.5 lb) since then with less feeds AND had the flu in there, so I thought it was worth asking for a trial with no tube. So I emailed the team and anxiously awaited their response. They responded today that we can do a 7 week trial of no tube-feeding, but Jax has to drink his carnation-milk before bed, which equals half of the overnight feed he's getting now. That means he needs to get in 30oz of his carnation milk every day, and hopefully with less food overnight, his hunger will get better to EAT more food during the day.

This is a challenge. I'm on him all day every day about food. His hunger and volume has gotten better since reducing his overnight feed, and even his feeding therapist agrees. But he still struggles. I'm hoping this trial will give him a sense of what he needs to do. He's taking a lot more responsibility this year with his age.

We'll need to find a way to not feel total defeat or devastation if on March 19, they say we need to go back to using the tube. We've never had a trial like this before and the weight of the trial feels slightly overwhelming, but hey... we've got to try!

3rd grade b-ball studs

I'd like to point out that I said NOTHING watching Jax wipe his face between shots... 

Teacher in-service day = pajamas and Christmas gift usage.

Some cool hats from Uncle Adam and Aunt D

1 comment:

Unknown said...

Praying the appointment went well and he is on the way to being tube free!