Early in the morning today, he had blood work done.
Hajime’s weight dropped extremely. His weight was 87.5lb when he was transferred to this hospital. That’s 38.87kg. When he use to go to ALS clinic, he weighed 100lb. He’s losing too much weight so we decided to increase nutritional intake. They have been gradually increasing it but when they just weighed him recently, his weight had dropped again. The effect of increasing the nutrition intake is supposed to show in the blood, hence the blood test.
After the test, it was morning and he had physical therapy at 10AM. It’s an hour earlier than usual so Hajime couldn’t take a shower in the morning. Instead he had to take it past noon.
Yesterday, because we were late, Hajime couldn’t go outside. But because I was there today, he was able to go out on a wheel chair. It looked like he felt nice breathing the air outside. He sat longer than usual, which was one hour in his wheel chair. Wo~w!
Around 1:30PM he showered. He had a bit of a breathing problem and he couldn’t go the shower room, but there were no problems when he was showering. Right after he showered, my husband brought the kids.
The RT cared for his trach right after the shower. Hajime almost always trembles when somebody touches his trach. The trembling is to an extent that it worries me.
Recently, his leg muscles seem to have weakened and he doesn’t have much strength to stand. He starts shaking when his muscles weaken so I am thinking that the shaking of his legs is because his muscles are weakening.
The progression of his disease has not stopped and is progressing while being hospitalized. Not only can he not move his left arm, he can’t raise his right arm with his own strength anymore. He can’t grasp anything either. It’s a sad reality.
I have to face this, but a part of me just can’t. If I’m anxious, Hajime will also be anxious. That’s why I have to stand strong.
But it’s so~ hard!
Translated by CS