Sep 20 - Determined to figure out the feeding issues

Sep 20th - We spent close to a month with an online tube weaning program to try to get Kyle to eat. He started showing more interest in food and became slightly less aversive as we went down on the tube feeds. However, progress stalled and he never took off taking more in orally. It was then determined that he did not have the proper oral motor skills to chew and swallow so we decided to stop the wean and wait for him to develop the skills. A week later he pulled out his NG tube so we saw it as an opportunity to see if he would eat better without it. We left it out for a good 10 hours but unfortunately the hungrier he got the angrier he got and consequently he worse he ate. He became really upset and fussy and we had to put the tube back in. We are now giving him a break from oral feeding because it was just too stressful for him. We are definitely determined to get his feeding issues resolved in the near future though. Giving up is never an option!

Kyle got his new AFO's two weeks ago and is now wearing them for standing. They don't bother him at all but it does take some work to put them on and take them off.

We took Kyle out to the store for the first time two weeks ago since we only have a few weeks left before RSV season starts and winter lockdown begins so it's now or wait another seven months. We also started taking Kyle out for short walks around the neighborhood and I think he enjoys it.