As I sat here in bed preparing to write this, it just occurred to me how many things I simply didn’t know existed before Kiran. Did you know they sell a powder or gel thickening agent to make liquids easier for people with risk of aspiration (otherwise known as “going down the wrong tube”; taking food or water into your lungs) to swallow effectively? True story. I ordered some from a company yesterday, in order to get the gel that Kiran’s feeding therapist uses.
Good thing I did, because that is our big news!!!!! First, minor backstory.
You might remember Kiran recently got a swallow study. This is the third swallow study he has gotten in his lifetime – and the most effective – even though we only got a few swallows, we could get a sense of what was happening. Kiran does aspirate small amounts, and the study showed liquids were an issue for him. When his feeding therapist got the report, we were told it was best to stop giving him liquids at home until we could trial with her to see what might work best (and most safely) for him.
It’s not that he was ever a big drinker. I had been trying with various things – sippy cups, the honey bear cup, medicine cups – but I was lucky to ever get one drink in him. Like with everything, I would offer it to him. We landed on just trying with a sippy cup – mostly playing with it or biting it – occasionally small sips would be taken. But I stopped completely after the swallow study.
And we have been trialing different things in feeding therapy the last few weeks. Flavored water, carbonated water, water thickened to what they call nectar consistency….The goal was to figure out what would be safest for him; which type of water would help him be most aware of its presence to swallow effectively. And today, we got the green light: We now get to try nectar thick water from a spoon at home.
It is crazy the things we celebrate along this journey! It is so nice to have clear guidance on how to safely get him to practice drinking. I feel like the swallow study really helped us be able to hone in on what might help Kiran move forward in a safe way. And I’m excited for my giant pump of gel thickener to get here so we can get started!
In other very cool therapy news – We practice standing a lot in physical therapy. The PT supports him a little bit at the waist while his hands are propped up on a table, and we distract him with toys and songs and conversation. Today, he stood this way, without even attempting to buckle his knees, for ALMOST TEN WHOLE MINUTES! I don’t believe we have even come close to that mark before!!!
In a couple of weeks, we should know if he gets a spot in the cage for the next session starting in March. Fingers crossed!
Progress. Steps forward. We might be shaky, but we are still moving.