Find it together

It has been four days since grandma came.
Fun time seems to pass quickly and I am hoping for the happiest time for Hajime.

Today, Hajime wanted to tell me something using the tobil, but it is not working because of some kind of viruses.
We tried the communication board, but it did not work as Hajime can't raise his legs any longer.
He ended up writing on his bed with his foot as usual. What I read was “Shower is head and arm only for today.”
He did not want his body to be cleaned.
I passed that message along to Jamie who gave him a bed bath.

This morning, Hajime told me again “scary”
Looks like he is feeling more and more negatively.

He is scared of the future as he has less and less control of his legs.
What I am scared of the most is that he will not be able to communicate.
I think it is very important to use tobi's eye system on a regular basis.

A nurse came at night. Hajime's blood pressure had come down, so no need for medicine.
I am relieved!
We were told to use a suppository regularly. If needed, put an open diaper underneath.
We will administer a suppository after an feeding in the morning every two days.
It is hard for me to do something Hajime does not want to do.
As for his eyes, antibiotic drops solved the problem, so that he can blink now.
We will keep an eye on it.
The nurse told us that when Hajime is feeling down, try to listen to him as much as possible.
It is a good thing that Hajime expresses his emotions.
I think the best thing to do is to listen to him.

I wish Hajime could feel happy being alive every day. It would be wonderful to find something that could make him feel that way.
We will keep looking together.


(Translated by Yoko. B)