Recently, Hajime has been having a hard time emotionally. There is nothing on TV that he wants to see, and there is nothing else he can do. He seems to dislike being read to or listening to music. So during the day, he just lies in bed staring at the ceiling.
Caring for someone is not just taking care of his physical needs, but also handling his activities and emotional issues. But I have the feeling that I am not doing those things. I am so disappointed in myself...
Recently, he has been having a lot of trouble moving his eyes, and now he is unable to move them. It seems that when he consciously tries to move his eyes to the right or to the left, he strains his eyes and they don't move well. So it is very difficult to communicate with Hajime. Even if we use the message board, he needs to take a lot of breaks before he can get the message done, so it takes almost an hour.
Because we do have other children, things often get a bit difficult. I end up putting Hajime's needs first. Then I make my youngest child feel neglected. But I am trying to pay more attention to my other children. Especially when my husband is at home.
Last Tuesday, Stephen Hawking gave a lecture at the university where my husband works. This was a valuable opportunity for Hajime, so he went with my husband. Only one guest was allowed per person with a university ID, so unfortunately I had to wait in the car in the parking lot.
Even with ALS, Stephen is continuing his research.
It was amazing how he was able to input one letter per minute on his PC. It was also great that he could speak about the origins of the universe in front of so many people... It made me think how great it would be if Hajime had his energy...
The lecture was an hour and a half long, so I was relieved that Hajime managed to hear the whole thing. Something was wrong with his suction machine at the beginning and he couldn't suction, but somehow he made it through to the end.
I think it was a very valuable experience for him. But part of Hajime didn't even want to go.
Today I updated my English blog. I was behind. It was a good opportunity to look back and think back on this and that.
The past few days, we have had flies in the house, and we're having a hard time getting rid of them. And yesterday there was one on Hajime's face. I can't always be watching his face and I feel so sorry for him (when this happens), so when I see a fly near Hajime, I am frantic to get it. Hajime can't do anything so he can't even shoo a fly away. I really feel sorry for him.
Hajime's room is really bad, because in the summer it is hot and there are bugs. We don't know what to do because there is nowhere else to move him. In the winter, it is OK. I want our home to be the best place for Hajime to be. I have to at least be watching for bugs.
A few weeks ago, we had a big problem with termites. Luckily, there were none on his bed, so all we had to do was get rid of the termites on the floor. It turns out that there are termites under the house, so that will be taken care of sometime this week.
Bugs are really terrible. Hajime hates bugs, so I am obsessed (to keep them away).
Hajime's runny nose has been very heavy the past few days.
The doctor came last week and prescribed allergy medication, but it has not helped him at all. I'm wondering if maybe it is not allergies.
His runny nose is sometimes clear and sometimes green. Why is that? I guess there are so many things that even doctors don't know. I hope that his runny nose problem will be solved soon.
Last Saturday, they replaced his trache and the respirator circuit, but it looks like water is collecting inside the circuit (tube) when they replaced it. That is why the title volume decreases and the alarm keeps going off.
It happened early yesterday morning and this morning. No one knows why water tends to collect when they replace the tube. It's attached to a heater. If we leave it, it should completely dry up. The water drops are collecting in the tube because of the heater. When there is a certain amount of water in the tube, the alarm goes off.
I wonder if people in Japan can change something like this on their own?
The fact that neither the day nurse nor the night nurse understands this problem is another issue. They don't know why the alarm goes off. I wish that they would put a little more focus into their work.