So sad...

I go to the hospital after children's school, so had some time in the
afternoon, after the long time. So I unpacked the carton boxes after
moving, and arranging things.

After a while, I sat down before the PC and saw Hajime's picture on
FB. When Hajime was fully fine, his smile was filled with hope.

Until now, why I was not crying this much and being able to be strong,
I even wondered myself, but this time, could not stop crying. Crying,
crying, and even with raising my voice... Why our Lord gave him this
experience, I was saying...

Well, I understood in my head, because we got a lot from the
experience God had given us. I always thank God.

But today, I cried over saying "why?"

In the afternoon, I picked up Yuki and went to Hospital to see Hajime.
Hajime gave really good smile. Maybe because Papa did the care instead
of nurses, very hard. Anyhow, it seems it's better for him being
taking care by his family.

This evening, we had the regular trach tube exchange. Today, it was my
turn to pull off the tube and papa was to put the new one. I was so
nervous... The RT was the different person from the last time, so the
way and order was different... we had a lot of hassle while we were
doing it.

The cuff of trach for Hajime has to be shrunk at first. Usually it is
inflated to stop his saliva because his saliva is more than usual. So
when we exchange the trach, we have to shrink it. Soon we did it, his
mouth was filled with bubble and saliva, so we aspirate the saliva
with the suction machine.

And we took of the ventilator and pulled off the trach. I felt
something was hocked, but I had to pull it of at once. I did it, but
it was scarcely...

Well, but the most troubled one was Hajime. He had very red face and
had difficult time. He was saying "I want this no more..." with his
mouth.

He cannot make his arms and legs move as he wants. Just watching TV...
In this situation, he has to suffer like this. This confirmed me he
has been through such a difficult time... Doing best, more and more...

But today we had a good news. We got to know a study team in
Northwestern University discovered the mechanism of ALS. To know why
and new medicine, this will not be too far, I hope.

I will put it on my article later.

Today was difficult day for him again, but he did his best, again.


Translated by STK