Posted on January 15, 2018
Sunday, January 14th
Go Big or Go Backwards! This seems to be Shawn's motto.
When he decides to do something, he doesn't just do it a little.
Shawn stood up assisted twice this weekend! It is so exhausting for him, but he wanted to and pushed himself farther than his team expected.
He also tried breathing with a new device that basically allows him to breathe on his own, and allows him to try to talk. He agreed to try for 15 minutes, but made it 43 minutes!! He is going to start speech therapy, which will also help him to finally be able to swallow liquids, and then eventually foods. He is so thirsty and is dreaming of drinking pomegranate juice. His pomegranate juice goal is driving him to push himself.
Shawn really struggles with sleeping at night. He was having an electrical sensation every time he slept so he didn't want to sleep. He finally slept today without that sensation so hopefully he is past that and can get the rest he needs to heal.
He is also doing well with his nutrition and doesn't seem to have stomach pain or issues anymore.
His pacemaker has moved a bit, so once he is recovered more he will have to have a minor surgery to move it back and make sure it's working properly.
All in all he had a wonderful weekend filled with big wins, plus he had all his siblings and dad visiting him and cheering him on. He seemed so happy to be supported and loved by family.