Today Ethan decided he wanted to dive in and start filming his interpretation of his journey. He wanted me part of it so that we could tell his story. I started sending him pictures and video from my phone as well as the video I took on his camera.
He has a vision of what he wants his story to look like. He will start editing tomorrow. He is excited about sharing it. It is also therapeutic for him.
This is offering him distraction from his 3 canker sores as well as his tongue that is still healing. He is struggling to take in calories because of the pain. He has the desire to eat but he feels like he is being stabbed in the mouth anytime he tries to eat.
His weight has been dropping subtly. He tries so hard. Tonight he scrapped the bbq chicken he was excited to eat for a softer yogurt. I mixed in as much “duocal” as I could to beef up the amount of calories he was ingesting. His kidney diet has turned into an “eat whatever gets you calories without pain” diet.
Despite this difficult fight, he was still able to do things he enjoyed today. He is a true fighter.
Ethan’s bright spot was that Paul put in his window ac unit so he can sleep in a tundra. He loves a cold sleeping environment. At least he is resting well.
I bet he enjoyed his AC last night.
ReplyDeleteI’m looking forward to seeing his story, I know it will be amazing. It will help so many other transplant patients, not to mention everyone else who watches it and gets so much inspiration from both you and Ethan. Can’t wait to see it when he’s all finished. I hope his canker sores and tongue heal soon!!! 🙏
ReplyDeleteI'm so excited to see his story too! I'm already tearing up at how much he and you have been through. xoxo
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