So today was one of the last (we really hope) tests that Josh has to have done for awhile. He had a swallow study done down at Primary Children's Medical Center. His Occupational Therapist also came with us to observe and be able to see first hand what is, or isn't happening.
First of all, Josh did great! He cooperated and ate and drank everything we gave him, even with the barium in it. His swallow is looking good. He had a tiny bit of pooling (like it being stuck in the back of your throat) with the thin liquids, but he did awesome on the pureed foods. So basically he is not aspirating anything anymore and the pooling is minimal. So this means we can FINALLY after 10 months, go back to regular thin liquids! We are going to wean him off the thickener this week and see how he does. I did use a regular sippy cup tonight with gaterade to see how he reacted. He can't gulp with a sippy cup since it requires some good sucking. He did OK, but was not really into it. Change is always hard for him.
So after this weeks tests we have found out he does not have a swallowing disorder, and the pooling is very minimal. Basically his problem is a severe delay in oral-motor development, and sensory issues on top of that. So we will just keep working on him learning how to move his tongue around in his mouth, chew and manage that together. A pretty daunting thing for him. We'll see on Feb 4th what the team at the Feeding Clinic says at Primary's, but it will be along those lines.
So while we are basically where we thought we were, it is such great news to finally be able to give him normal drinks and not use the wedge to position him for feeding! Progress is great!
1 week ago