Oct 28, 2011

Hajime's T-shirt

I cleaned Hajime's stuff today.
Putting away his clothing was the saddest.

He has many T-shirts and each one brings back a good memory, like the time he was wearing it or the one he really liked.

I couldn't help crying looking at Hajime's favorite shirt that we bought in Hawaii.

He can still wear them, but the design on the back will have to be cut.
It was not too long ago when Hajime was healthy wearing these clothes.

Oh, no. My tears keep pouring out.

Translated by Yoko B.

Oct 27, 2011

Nurses that we met

As the time to leave the hospital nears, we feel sad to leave.

The beginning days at this hospital were pretty difficult. There were not many people who were familiar with ALS, and things were very different from the previous hospital.

Hajime wanted to go home as he was unsettled and not feeling comfortable.

However, after three months or so, everyone became like family members. It seems like a long time ago.

We had a very good relationship with the doctors as well and talked a lot about Hajime's future and current conditions. Hard to believe that we will be saying good bye to the doctors soon.

Today, we met a nurse who is assigned to come to our house to help us. She is hired by our angel, Mr. Stu at ALSGA. He arranged the one-week nursing service for us. We can't thank him enough for all the help he has provided to us.

The kind looking nurse's name is Tammy and she lives in El Monte. She looked a little surprised to see Hajime for the first time, but I hope we can have a trusting relationship.

We will see her again at home next Monday when Hajime leaves the hospital.

It's been a busy day, it really feels like Hajime is coming home soon.
It's happening shortly.

Translated by Yoko B.

Oct 26, 2011

Hero of the month

Last night, Hajime told me the following things;

I'm scared to go to sleep.
It is like next time I wake up I'm dead.

Hajime says recently he thinks that way.
He says he has a feeling like this.
It breaks my heart to think my son is feeling fear of death every day...
I told him God will save him and there is nothing to worry about.
God will lead our life for the better stage...

But today, Hajime is so fine.

He has had heavy secretion and even though I try to absorb it,
something has been stuck and has never come out.
After trying the cough assist, an amazingly huge lump came out!
Until yesterday, plenty of secretion was accumulated
and a lump comes out after another.
Cough assist has a really tremendous power.

Today, we've got a secret party for Hajime.
It was...

Hero of the month

He was chosen as the hero????
We have kept it a secret to Hajime,
so he didn't know who would come
and what would happen.
We took him on a wheelchair.
Hajime looked so worried.

 Later, we went to the party...
Hajime appeared, welcomed by cheers of many people.

Hajime must have been happy to have many friends with him.
Many friends came from Pasadena taking an hour to see Hajime.

Got plenty of presents, including his favorite game soft!
It is the one which has gone on sale just today!
Besides, he's got a photo from Hajime walk,
when our church youth group walked for Hajime.

We were so impressed.

Thank you so much for everybody's kindness.

Translated by Yuki Taterin

Oct 25, 2011


The day when Hajime leaves hospital has been postponed. There will be a power outage next Sunday in our neighborhood. It could be very dangerous for Hajime not to have power for long hours.

We had a blackout last weekend which was supposed to last from 7 am to 5 pm in our neighborhood, but the power did not come back till 10 pm. In a situation like this, even an electric generator can't support it.

So we decided it would be too risky to deal with the black out right after he gets released from the hospital. Hajime is scheduled to be released on 10/31 a day after the planned power outage. He is pretty disappointed, but there is nothing we can do about it.

He was just about to come home.

He is doing well today though. The oxygen level has been set at 29%, but it got lowered to 25 % today as he is stabilizing.

However, he has been getting thick mucus which has been hard to be vacuumed out. I am a bit concerned that if I will know what to do when that happens at home.

I will keep trying anyway.

Translated by Yoko B.

Oct 24, 2011

His warm hands

I was not able to update my blog yesterday due to a power outage. There will be one more black out next Sunday and I am very concerned. Hajime will be at home by then and I worry about the battery and oxygen supply.

Hajime is also worried, but he is doing well as usual.

For the last few days, I have been pushing myself to prepare the house for him to come home. I can't wait to have him back at home, but at the same time, I am very scared. What if.....What if something goes wrong? Well, all I can do is to believe in god and keep going.

I talked to him a lot while I was holding his warm hands. About when he was little, all the good memories, his sickness and concerns in the future....

I remember Hajime often telling me when he was little, “Mom, I will protect you!” And he still means it. I can't help crying when I feel his love for me. Why him?

He is always so kind to us. He is truly like an angel. I just want to look at his smile forever.

Recently, I have been crying a lot.

Please, god help Hajime.

Translated by Yoko B,.

Oct 22, 2011

Not to waste time

Hajime will be leaving the hospital very soon. The last five months seemed like a long time, but it went by fast. I am scared. because I can't help thinking about what if something goes wrong at home......

I went to the hospital late today as I was cleaning the house and running errands. While staying at the hospital as long as possible, I put away other things like cleaning the house after moving. Same thing with Hajime's room. I regret that I waited till the last minute.

At the hospital, there was a weekly replacement of trach. This is the last time before he leaves the hospital, and it was my turn to do it. I was pretty nervous.

Replacing trach went smoothly, and moved on to trach care.

When I was tying the trach, it got caught with hajime's hair. It was upsetting to see him in pain. I told myself to be really careful next time with his longer hair when I put my hands behind his neck

There has not been enough time to get his hair cut at the hospital, but I will try to do it.

Will continue to take care of so many other things I need to do.

Keep it up!

Translated by YOKO B.

Oct 21, 2011

Great response to Hajime's video

I stayed at the hospital last night. Could not update my blog as I did not have my computer. Hajime is doing well.

The video that I created is getting a great response with increased number of access to my blog. Looks like the words have spread around at the hospital as well, where every person I ran into made a comment, “ I watched your video. It was beautiful! Brought me to tears. You are a very strong person”.I feel touched.

As the video is full of memories of Hajime for us, it makes me very emotional.
However, I was a little concerned that people may not get the message that I wanted to convey. I was wrong, it moved many people deeply.

Hajime's smile is truly warm and soothing. It gives me courage. It gives me energy. It gives me hope. I will cherish every day and keep it up for Hajime.

Today, his therapist and a computer rep from the hospital set up a connection for his iPod, so that he can listen to music.

Hajime listened to his favorite song called MACROSS “Do you remember love?” many times. He has never said he wanted to listen to music, but he was so happy listening to music for a long time.

It makes me happy that at lease there is one thing that he can enjoy.

Translated by Yoko Boyles

Oct 19, 2011

Doctors meeting

He slept well last night and got up early this morning.

The doctor came to ask Hajime a lot of questions including tough ones to answer such as whether to accept CPR or not. Hajime tried to answer one by one.

We had a meeting with seven doctors today including a doctor from Kaiser.
It was long and lasted for two hours.
The meeting was focused on our questions that were given to them earlier.

We decided to go with palliative care.
This service is administered at home without going to a hospital with several visits a week from a nurse and a doctor as well if it's necessary.
In an emergency case, we could go to an ER, so we can be flexible.

Hajime was tired from playing video games all day, but he played with his father all evening as he was really looking forward to it.
His dad never wins.

Hajime's toes operate the remote better than his father.

(Translated by Yoko B.)

Oct 18, 2011

Thank you, everyone!

We received lots of comments for video that was posted yesterday.
I was so glad to be able to show many people Hajime's wonderful smile. Thank you very much.

Hajime rushed to watch the video himself and he said that “ It made me cry.” I was concerned that it may be too hard for him to see himself when he was doing well. However, he told me that it was very good and I felt relieved.

I think it was really great that many people watch Hajime's smile and know that he is fighting hard.

Today, he needed cough assist many times as the oxygen level suddenly went down.
It was scary to know that all the built up mucus was stuck deep inside of him.

From now on, we will use cough assist every six hours because of recent issues that we faced.
I hope it will help him breathe easier.

We will finally have a meeting tomorrow.
An individual meeting with a Kaiser's doctor after our usual meeting is scheduled.
I will try to ask as many questions as possible.

Translated by Yoko B.

Oct 17, 2011

Hajime's video

I made a video of Hajime.
You can see lots of Hajime's smiles.

Oct 16, 2011

Day Breaks

Even though Oxygen level is still low somewhat, Hajime is getting is being recovered. Nevertheless, we are worried what can be done if something happens while he is at home.

The ventilator at the hospital can increase the Oxygen level as much as 100%, but the one to be used at home does not function like that. The manual adjustment is required and it can go at most 40% with the tank equipped at home.

This worries me what can be done in case of emergency… will see Doctor and ask.

Hajime looked fine just as usual, and we played the game. He is very good at the game and almost always wins. Even he plays with his toes and I use my fingers… I think he is most excited when plays with his brother and/ or friends who can be very competitive.

All right! I am going to improve my skill for good matches!

Translated by YM

Oct 15, 2011

Oxygen level Decrease

The bed & other living wares had been delivered to home one after another.
The bed is so compact and simple, unlike the one at the hospital.

I am surprised how fast the things are going on once the Hajime’s date of discharge is determined, and I really cannot wait for him come back home.

But it happened a little worried tonight…

Today was a day of tracy change, but Hajime’s physical condition had drastically changed for worse after then and the oxygen level went down even as low as [80] and not recovered quite some time. It is very dangerous that the oxygen level down to this much.

The secretion which was in the back is now coming up, whether or not of the effect of the recent Cough assist, however it is very strong mucus and hard to absorb. Hajime is at risk of life, unless otherwise this mucus is sucked up.

I was terribly worried about him getting less conscious because of lack of oxygen. Hajime was crying with fear. I kept telling him “Hang in there, Hajime! We all are here with you” while I was also in fear…

The Oxygen level was raised to 50% and then he was getting better and around at [97] after all. The amount of gas in the blood was examined, and it’s okay.

Always something unexpected happens at tracy change, we have to be careful and be prepared. It is still very important to do this, tracy change, to prevent infection.

There is no end to the worries…

Translated by YM

Oct 13, 2011

We need help with the English Translations

I’d like to start off with a plea.

Is there anybody out there that can help translate this Japanese blog into English?
Please contact me if there’s somebody out there that can.
To the English Translation team, thank you very much for translating all the time.

Hajime is doing well as usual today.
Allison came during the day and in the afternoon Steve came.
Hajime looks really happy when he has visitors.

But the Cough Assist still seems to bother him.
Because we haven’t experienced this machine, we don’t know how much pain he has to withstand, but this machine is very important for his well being, we’d like for him to hang in there.

The day of discharge is set and to get ready for that, they have scheduled delivery of the necessities, which is tomorrow. Starting with the medical bed, it seems like they are bringing many things into our house.

I’m really happy now that the discharge date is set.
Hajime is having mixed emotions about this, but he is excited about being able to come home.

Translated by cks

Oct 12, 2011

He can leave the hospital soon!

We had a 24-hour training for the weekend,
and finally, the date of his leaving the hospital was settled.
We talked about the topic in today's meeting.

It's going to be on October 27th, Thursday.

Finally, Hajime will be able to go home.
When I look back, time flew like an arrow, but actually many days have passed by.
It's been already the fifth month since he was hospitalized for emergency on May 31st.

He can stay in this hospital for rehabilitation for only 100 days
owing to the insurance policy.
Actually, I expected he couldn't stay for as many as 100 days,
and chose the hospital in Orange County.
But it's amazing that we have come to the very limit.
I cannot believe that we have come here every day taking one hour one way.

As a matter of fact, we can stay here until November 2nd,

but since I wished to spend Halloween at home,
we have chosen the date.

Right away at night, a dealer contacted us to tell that
they wanted to deliver a medical bed, which surprised us a lot.
To deliver a bed, today!?
I told them not to deliver one tonight...

Hajime looks calm.
I've heard that he hates the Cough Assist he has just started,
and he told them he doesn't want to use it.
We have planned to order one to use at home,
but now we have a problem what we should do about it.
I talked about it with Hajime at night.

I told him there will be huge risk if he doesn't use the machine.
Hajime understood what I told him, and gave an answer,
"Let me try!"
It hurts me a lot to see him suffering from chest pain,
but it can't be helped in order to protect him from infection and pneumonia.

I cannot help shedding tears to think of the pain to face the disease like this.
But I have to fight the disease with Hajime too!
Thinking so, I'm supporting Hajime.

Translated by YT

Oct 11, 2011

Never want to have pain, any more...

After our hustled 24hours training, we were nervous at first, but
relaxed later. We could pass, even. Yay!

But I have realized after finished, it would be very difficult to care
him alone. Maybe because it was the first time and nervous, but
exhaustion after the training was significant.

And, in the daytime, I alone, and night with my husband. Unless we can
pass Medi-Cal, we cannot have budget for nursing care. It is too
expensive to pay by our own income. So we have to do it by ourselves. We
have 2 other kids to care. I am really nervous now.

But we have to do. Yes, we will! I am telling myself to do it.

Today, Hajime was very down. He said "I feel like sick" and told me his
body was very tired. In this few days, his plus was high, and not
feeling stable, either. I worry he is not infected again.

At night we talked like this

Me: You don't like Cough Assist?

Hajime: Yes.

Me: Cough Assist will prevent infection not to have pneumonia and things
like that.Even shorten your life, no more pain, you say_

Hajime: Yes

I recognized the pain is significantly hatred for Hajime. He had to have
the operation for pneumothorax without any choice, it must have been
very hard for Hajime.

For me, "Never want to have pain, anymore" was somewhat, shocking...

Translated by STK

Oct 10, 2011


Hajime has more and more secretions daily.
It is impossible to suction all of it out by just the ventilator.
For that reason, the hospital got him a Cough Assist.

In truth, Hajime hates this machine.
Why? Because his lungs hurt when he sucks air in.
I think it would be different if he gets used to it.

What’s different about this machine is that ventilators can pump oxygen in, but it won’t suck air out.
But this Cough Assist can pump air in and out, so it is able to suck secretions out.
It helps in preventing things such as pneumonia.

Pneumonia is something that we really have to avoid getting….

Translated by CKS

Oct 9, 2011

Finished safely!

Thanks to everyone, and on top of everything, energy from God, we could
finish 24hours training.

Before the training we were so nervous, but when it started, it was just
as review of everything we learned. So, we could do it relaxed, not
tensed. About the medicine, because it was in the nurse's withdraw, I
worried if I could get one smooth, but I could!

At night, we have to do the same as when Hajime would come back home,
put alarm on, and changed his position every 3hours, yes, I hassled! I
had imagined maybe we might not have no time to sleep, but there were,
it was amazing!

Doing everything by myself, and I could become confident in caring
Hajime. Doing is having confidence.

After 24hours training, my muscles were so tensed and painful because
maybe I got my nerve. But well, it will be everyday work, so should make
practice a lot.

Yes, we will do it!

Oh yeah, I have done a lot of preview with this paper!

Translated by STK

Oct 8, 2011

24hr Training

Today is the day of the “24hour” Training.
It was decided at the meeting we had Tuesday and I am nervous.
When I pass this training, the discharge date will be set and we can finally go home.
I won’t pass if Hajime is feels uncomfortable.

From today till tomorrow it is my turn and my husband will take my place tomorrow and start his training. We are both very nervous.

We had to exchange his trach tube today and it was my turn. I had two standards to meet so I was super nervous.

But without any trouble, I passed. Maybe it was good that I reviewed beforehand. The hardest part was getting his medicine ready, but I did really well with remembering everything that I was told, “Mom you’re doing a great job!”

I’m worried about sleeping at night, but I think I want to keep up with how I’m doing right now.

Translated by CKS

Oct 7, 2011

Life of a day

I have been making Hajime's movie from yesterday. But filled with tears
while I was making it. Hajime's face when he was fine made me smile.
Very good face.

As I could not upload an article yesterday, I upload for 2days. Well,
Hajime enjoys playing game all day long.

Oh, we had a thing like this.

Yesteday, Hajime was playing games all the time even not taking shower.
So, daddy said "Please take shower if you want to play games all day long!"

Not only fun, but achieving even one thing a day... Now Hajime is having
fun a lot, after he achieved playing games by his own. But instead of
just having fun, do something like taking shower, getting on the
wheelchair... yes, they are also important. With doing both, we can have
an enriched day. Fun is not just a fun, with doing this. He thinks like

If entertainment of playing game is just as it is, one day, it will not
become entertainment. He said he was worrying about it.

But *I* think like this.

Hajime has limited time. Certainly, "do something and do some fun" it is
important, and the fun would not become fun if it was continued. It may
cause the disappointment, in the future.

Yet, we never know when Hajime's toes are paralyzed, neither. How good
to make each day happy day for Hajime, I think... So, rather than
worrying about future, for me it is more important to cherish each moment.

Finally he could have one thing he can fully enjoy. His neck, his hands
are not moving anymore, cannot eat, only lying on the bed. Finally, he
got a moment he feels fun. Although his toes will not move in the
future, but he can play the games he gave up. It is like a dream come true!

I don't know what is the best. Of course having on and off is important.
But for me, to let Hajime spend a day with fun is the most important.

What would you think, if your son is like this?

Translated by STK

Oct 5, 2011

Live Match

Hajime could sleep very well last night. I think it must be long ago the
last time he could sleep this much. As he was sleeping until 10AM, the
speech therapy was put off to the afternoon.

But as soon as he woke up "Wanna play the game!" with smiles :D

Recently his skill got better. Of course because he plays everyday, no

And today, he was battling through the internet with the people on the
other edge of the world. Maybe nobody would have imagined their opponent
was playing with his toes! Great skills! And he did whole day long, in
the end.

Today, we had a meeting. It is only a limited short time Hajime can be
in this hospital. Latest, 3rd November, he has to discharge, meaning on
2nd November is the limit.

Translated by STK

Oct 4, 2011

I will never regret

Today, I could be at Hajime's hospital just a little. But he relieved me
with his usual smile.

Yesterday's Viber, chat he told me he felt lonely, but I could not go
there. I regret it significantly. So, the distance between the home and
the hospital is troublesome.

I am afraid of regretting anything recently. Every moment is precious.
And I want to treat them as much as possible. So I try to communicate
with him the best so that I will never regret.

To have dimond-wise one moment and one second.

This evening, suddenly my friend invited me to a concert of "Dreams Come
True" ( the Japanese Duo). I went there to have refreshment for the
4months's time. And had such a lovely time!

Their songs and musics reaches to the core of the hearts.
I enjoyed each piece thinking of Hajime.

Oct 3, 2011

Thank you Frank!

Mark came again today. They played games together and Hajime seemed very happy.
I am so glad for him that he made such a great friend!

Today my husband had a doctor’s appointment and there was also a farewell party for our beloved pastor Frank. So we could only stay at the hospital for a short time but Hajime was smiling at us like always.

He has a lot of secretions today too, coughed several times and I thought that the progress of the disease must be affecting it. The secretion is causing it so I’m really worried.

In the afternoon we left the hospital and headed for the farewell party. Frank has worked so hard for our family, he was the first one at the hospital when Hajime was hospitalized and supported us. He came to the hospital when Hajime had surgery in his lungs.
We really feel sorry and sad that someone who has done so much for us is leaving. But wherever he is at we are friends and also a family. I’m sure he will take care of Hajime from now on also.

Frank, thank you for doing so much for our family and Hajime!

After the party, I texted with Hajime who’s at the hospital, using a free application called Viber. What more is that I could use Japanese…Wonderful! And it’s good that Hajime makes faces using letters and symbols so I could understand how he’s feeling.

I continued chatting with Hajime who seemed sad at the hospital.

The messages with my beloved Hajime. It was a special moment.
He truly is a kind child.

Translated by CS

Oct 2, 2011

An Amazing Garden

From the morning today, three friends came to take care of our backyard.
They are Liliana, Lauren, and Natali. When it finished, an amazing
garden was done. This picture was taken in the garden.

From the left, Lauren, Liliana and Natali.

They are friends of our loving Joan. They worked for our garden so that
Hajime would be able to enjoy the beautiful garden when he comes home.
All the works are done by the volunteer and donations.

I hope the flowers are blooming when Hajime's back home :)

I showed the garden to Hajime through Facetime, and he was happy saying
"How nice!"

I went to the Hospital with Ryo. Hajime was longing for the reunion with
Ryo, so he was so happy. Battling the games and talking with iPad, the
communication they did was so beautiful.

At that night, Steve and Pat came to visit Hajime and gifted a cap to him.

This is the hat they bought when they got on to the battleship New
Jersey. How precious....

They come every week to talk with Hajime. Hajime is getting knowing many
things. Hajime looks forward to this time every week. I really
appreciate to them. Thank you!

But one thin I worry about him was having a bit a lot of secretion
today, and seemed he was troubled.

Translated by STK

Oct 1, 2011

The wheelchair has arrived.

I think Hajime was excited from morning because he had a great smile.

The reason is because his personal wheelchair is coming.
It came in the afternoon, but his new wheelchair came.

He sat on the wheelchair and had many adjustments done. We are not supposed to do the adjustments so they were taking their time to do it correctly.

Afterwards, we went outside. It’s been a few weeks since we’ve been out. I was worried because he’s been lying down for a few weeks, but he was fine.

But this wheelchair is bigger than the normal one…
Is our house too small for it?

Translated by CS