I think about how badly Hajime wants to go to school too. After we go home we are starting home school, but I am hoping that he’ll find something to enjoy about home schooling.
We have to change our schedule to come to the hospital. We take turns staying over, the one that goes home will be taking the kids to school and after pick up go to the hospital. So that’ll be about 4pm. Until then, the one that’s at the hospital has to do everything alone.
For several days now, we’ve been caring for Hajime by ourselves as a part of our training, so we’ve been very busy.
The morning medicines, 3 times daily feedings, suction, restroom, showering, physical therapy (moving him to the wheelchair and setting the artificial ventilator, etc.).
We do this till a little past noon so we are quite busy!
Today was tough too.
For some days now, Hajime’s been having an itchy forehead, and we’ve been putting medication on. If we don’t it starts to become dry and scaly. But because he’ll be cleaner from the daily shower, I think it should gradually get better.
Hajime was crying today too.
He constantly said he’s scared.
When I ask him what he’s scared about. He answered, “In a lot of way…”
The daily weakening of his muscles…it’s beyond what anybody can imagine.
I should’ve been encouraging him, but instead I just cried.
I’m sorry, Hajime.
Next Monday, we will be taking an ambulance to another hospital to get Botox.
I hope this time it works.
Translated by CS