Jul 31, 2011

What we need now

Similar accident to yesterday happened today again. I could stop it
because I was in the hospital.

I joined to bath him for the first time. Leaning the special bed a
little towards the bathtub, and showering on his body. During washing
his hair, his head was stayed on the pillow. However, how to wash was
very terrible. I felt they did not think they were washing a person's

They did not care water splashed to his eyes, without any care,
washing his ears. Hajime already had a lot of pain some part of his
body which muscle was already weakened and not moving. But it was not
cared at all. Hajime cannot say anything. I thought it must be very
difficult for him when he is alone.

This hospital is for children, but they do not have any ALS patient.
So they do not have any knowledge of ALS. Never known how the ALS
patients feels, and how to care. It is too bad for Hajime.

Today, he was crying many times.
Anger to the disease, nurses not understanding the disease, to himself
cannot do anything by his own. He showed his anger. We cannot hear his
sound because he cannot let his voice out. But he had crying hiccups,
even... he was crying this much.

They say big things, but with no techniques, I care. I wonder if it is
good for Hajime to continue things like this everyday. I really

For Hajime, having a disease progressing everyday, "this moment" is
more important rather than think about future.

How great it would be if we can fully live NOW.

I want to see Hajime's smile...

Translated by Satoko Okamoto

Jul 30, 2011

The Problems That Come Up Everyday

Now about this hospital that we’ve been transferred to, it’s concerning me that there have been a few troubles.

The system of the hospital, everything is different and besides not getting used to the place or the people, the difference in the medical equipment they use and the different protocols they have is confusing and is causing me to feel quite upsetting.

Today we already had trouble.

For the past two days, also because it was Hajime’s wish, we didn’t stay at the hospital and went home.
(It’s been two months since we went home together.) It’s a problem that happened the following morning…

Hajime is practicing to take off the ventilator, and he only does this when somebody was around.
However, this morning it was different.

They took the ventilator off for two hours without anybody around.
This should never happen.
It’s too late when something happens.

What’s even more upsetting is that during these two hours, they bathed him.
At the condition that Hajime is in, he should never be bathed without the ventilator on him.
Hajime was terrified.

And there’s more, the part of the body that needs the most care,
his neck and left arm were rough handled and it hurt him pretty badly.

He was crying when he told us about this.
Because Hajime hates this place so much, being biased made him feel even more depressed.

My husband’s emotionally exhausted from all these problems that have been happening daily.

Tonight, I’m spending the night, so I hope that we could avoid the troubles that may happen tomorrow.

Hajime was crying a lot today too.
He was expressing his anger toward this disease that he has.

Translated by Christine Shirota

Jul 27, 2011

The turbulent day

After coming back to the States from Japan, directly went to the
hospital and stayed for the night because Hajime asked me to. But I
was exhausted yesterday.

There were too many things yesterday. The biggest news was that Hajime
was finally pushed away from the hospital. Hajime was so anxious and
opposed to the forced discharge. But it did not change the decision of
the hospital, and he was transferred to the hospital we are now.

The reason was that medically speaking  Hajime was not needed to be
hospitalized any more. So he was transferred to a hospital which had a
facility for recovery, too. He was referred at 6PM by an ambulance.

This hospital is for children. It is located at Orange County, Tustin.
It is very far from our home, at least taking 1hour. But here is the
only hospital allows parents' stay and has individual room. So, we
reluctantly decided to this hospital. At least 4 weeks Hajime has to
stay in this hospital.

So, we spent today in this new hospital.

Hajime was crying many times because he could not get used to the new
environment - facility, the way of caring, and everything... I feel
former hospital's attitude was problematic. Although medically
Hajime's cleared, their system made him hurt this much. This was too
much, I feel.

Today, Hajime took shower. Although he was laying on the bed, taking
shower after 2 months made him shaken a lot in emotion. I wonder if it
was good for him...

Putting his feeling first, we will support him from tomorrow, too.

Translated by Satoko Okamoto

Jul 25, 2011

Back With Hajime

I’m home!
I’ve come back to where Hajime is.
On the 25th, at 6p.m. I arrived in Los Angeles and I went directly to the hospital
On Monday, at noon the doctor gave the discharge order,
so Hajime had to be transferred on the day of our arrival,
but the nurse was moved by Hajime’s tears and asked the doctor for him.
So, the transfer that was supposed to happen that day had been canceled.
Because of that, my husband was able to pick us up.
As soon as Hajime saw us he started to cry.
He said “Mama, Mama~” without a voice and just with his mouth over and over.
I’m guessing that the two weeks without us were lonely and tough.
With the transfer problem at the hospital and being considerate towards his father,
Hajime tried the best that he could with his own ability.
So, I decided to stay overnight at the hospital, and besides Hajime requested!
After a ten hour flight, honestly it was not easy being with him at the hospital,
regardless I think it was good that I was able to see a good expression on Hajime.
 We appealed the discharge, because it was also Hajime’s will to do so.
(The hospital admitted the hospitalization till August, but they suddenly ordered the discharge,
it was an order that completely disregarded Hajime’s feelings.)
I think we will be starting that process today.
I don’t think anything will change from doing this, but I’m still going to try and do all that I can.
And now our moving, well it doesn’t seem like the remodeling will be done by August 1st.
We need 3 hole ground electrical outlets but they are all 2 holes and since the apartment is old,
the work is going to be complicated.
There are many obstacles but the owner is very nice and cooperative so the owner is doing the best to help us.
Just like that our place isn’t even ready to be ready so Hajime can’t settle even if he wants to be.
I hope this will all get underway as soon as possible.
Translated by Christine Shirota

Jul 22, 2011

I Will Be Returning in a Few Days

The trip to Japan that seemed long, but actually short is over tomorrow.
At midnight Japan time, on the 26th we will return to the US.

Ever since I left the US there were many troubles.

My sister in law is coming and we suddenly have this transfer issue!
And the hospital starts saying...that they can’t discharge him while we’re in the process of moving.
But we can’t stay in the hospital that we are at…so what are we supposed to do?

…And this absurd problem would keep coming up and disappear, over and over…
Right now, we are still faced with this problem.
As early as the beginning of next week, there’s going to be a transfer and we will probably change hospitals.

So for the two weeks that I was gone, because Hajime comforted and tried to help relax his father that couldn’t rest because of this problem, I was able to spend a few days in Japan.

I am so sorry.

Hajime had gallium injected and had a test where they scan his entire body.
We don’t have the results yet, but it seems like he is fine.
(This is a test that will find any infections in the body.)

It seems like he will have the same test tomorrow.

………………………………………But it’s awful for them to tell us to transfer without telling us the test results. There are so many things that I just can’t agree with.

And today they had to try 6 times (4 people) to change the IV.
Hajime was crying and I felt really sorry for him.

6 times is a bit too much isn’t it? It’s terrible.

Translated by Christine Shirota

Jul 20, 2011

First walk since hospitalization

During my husband sister visit, Hajime walked by himself.
Please view this video.

When I saw this, I cried.
I'm so proud of Hajime.

(translated by HM)

Jul 19, 2011

Thank you Aki chan!

I am sorry for not being update frequently. I went out sometimes or my
internet was not really good...

It is so shame but my hudsband's younger sister has already been back
to Japan. Hajime missed her so much after she left his room, and cried
for sadness. We really appreciate and thank her for doing everything
for Hajime.

I am so happy seeing such relaxed face of Hajime.

For Papa facing a trouble for Hajime's hospital transfer, smiles of
Hajime are good source for energy. Hang on, Papa!

Finally, Hajime will stay at Kaiser where he is right now. But
pressure from the hospital to push him out is significant. I hope
things will go better, though.

Hajime's infection does not go better soon, so will have examination
of the specialist. His white cells rate in the blood is higher than
usual from when he was hospitalized. Antibiotics works when he takes,
while plus is higher, or secretion smelled or not a good conditioned
colour... So, the matter of infections are very difficult to clear.

We are in a such a situation. But why does the hospital side give us
difficulties? I pray for us to get back to the peaceful state until we
get back to the States.

Translated by Satoko Okamoto

Jul 15, 2011

Younger Sister Arrived from Japan

My husband has been troubled from hospital problems these past few days but on the 15th,
my husband sister arrived from Japan to help.
I think he won’t be as stressed and should feel a little better because of her.
Sister, who has taken days off of work to come here to do something for Hajime,
for us will be staying in Los Angeles till the 18th.
Today, they went to Tustin to take a look at the other facility.
They were surprised that the facility was very nice.
Moreover, they will do the physical therapy regardless of the parent being there or not.
The only concern is that it is too far.
Now after going through these troubles, the Kaiser that he is currently staying at said that if he could leave the hospital by 8/1,
he could stay till then.
This is what we’ve been wanting so I thought that it would be good if that’s how it happens.
But it might be hard with our moving schedule.
Either way, I am hoping that it will all turn for the better.
The long day is over.
I hope tomorrow is a good day again!
Translated by Christine Shirota

Jul 14, 2011

Hospital Transfer

Sorry for not being able to update the blog, everyone!

I was very busy from the day I arrived, and not really good internet
connection... so, could not do it.

Well then, Hajime after me left the States... Not in his condition,
but for the hospital, there were troubles/

Soon after I left for Japan, we had our house inspection.

We cannot let him come back to the house we are now in, because we are
moving to another place, from the first place. Yet, the inspection for
the new house cannot be done until all the furnitures are moved to the

The most of it, the hospital announced us to let Hajime to transfer to
other hospital because Hajime is already good enough for discharge.
But because the house environment is not enough for him to come back,
he has to stay in a hospital which he can stay till all are settled.

But the facility is very far away. This is the most problematic thing for us.

Papa is troubled while I am away...

Today, there will be a family meeting. What result we will have, is
the matter of now...

Translated by Satoko Okamoto

Jul 11, 2011

With His Own Strength

I was nervous from morning today.
I’m so worried about departing in my heart.
I’m not going to cry until after I part with Hajime!
Hajime had many tests done, it seems like he has an infection.
They found the infection though he has antibiotics through an IV.
This means that he has to switch to stronger antibiotics.
They are still going through some test so no clear answer was given,
but when he has this type of infection, he needs the IV for 10days.
Trach care is really difficult.
I was exchanging the gauze at the trach today and the color was yellowish green.
When it’s infected, it turns into this color. There were no smell, but I am worried if it’s infected.
Still, he had a pretty good day.
During physical therapy there was another surprising happening.
He stood with his own strength from a sitting position. Wo~w!
And he walked over and over again.
And perhaps because they had therapy with an arm sling on,
 he didn’t feel as much pain in his shoulder.
Good job for today too!
Hajime’s crying again right now.
Please forgive your mother.
So from tomorrow I’ll update my blog from Japan.
I will try to update daily but I’ll apologize beforehand if I can’t.
I’m planning to write whatever my husband tells me.
I’ll be going now!
Translated by Christine Shirota

Jul 10, 2011

Thank you all the time!

Hajime could sleep very well last night. This morning he looked so good.

He puts a lot of intravenous drips because he still takes antibiotics.
But thanks to them, his high rated white cell was getting down to

Secretion colour has been changing to clear, and became no smell, so
it must be alright. He has to be very careful for not being infected
to anything, especially because his trancheotomy treatment makes him
easy to get it. If he gets pneumonia, it will be very risky...

Today again, his day was to put the ice bag on his forehead.

But we pleasantly had our guest, Joan and Alice we love!

Both of them love us as if we are their own family. Joan spread news
about Hajime all around South Pasadena to ask for help. Thanks to
Joan's action, many people signed up that they would like to help us.
I want to list their name here, but it is too many to do so, so I skip
it, but Thank You everyone.

And it was also Joan introduce us the very good apartment when we
looked for the first floor flat. Yesterday, we finally made the
contract for the new apartment.

They care Ryo and Yuki a lot, too. It must save their feelings a lot,
I think. Thank you Joan! Really all of us are cared a lot.

When they come, Hajime naturally becomes smily. They encourage and
cheer Hajime.

Thank you both of you for coming over!

In the afternoon, Hajime was doing good for the physical therapy.

Today, it seemed he had a lot of pain on his left shoulder. Hajime
appealed to me that he wanted to walk. So, I let him stand up to walk.
But because his joints were already having wide gap, so it made him
have sharp pain. So, he walked only a few steps.

Now Hajime is fighting against the pain on his shoulder. Pain attacks
him even when he lays down, and because it hangs 

on, again painful
when he is standing. It is really pity.

Aren't there any good slings?

Translated by Satoko Okamoto

Jul 9, 2011

Staying over at the hospital

The heart rate has been over 140 since last night and the doctor’s been coming at night,
there was a blood test, x-ray, examining the heart…so many things.
Last night was my husband’s turn and it seems like he couldn’t sleep because of what went on.
So he seemed really sleepy during the day.
We had to go home in the morning so we left the hospital room after asking the nurse to take care of him.
He had antibiotics through an IV and his heart rate was dropping back down.
In the noon time we went to contract our new apartment.
We are finally moving. This is going to be tough too!
But we have good support from our friends and it seems like they are going to help us so I am not as worried.
In the afternoon, we had physical therapy after missing it for two days.
Hajime gave his effort again today.
He sat without support on his back, by himself.
He’s quickly getting the hang of it.
After that he got off the bed and stood, walked a few steps and sat on the chair.
He sat for one hour and ten minutes.
I think it’s important to continue this daily.
Go, Hajime!
Tonight is my turn to stay over, but it might be the last time I’m spending the night here in this hospital.
 A long stay at the hospital. The life of taking turns sleeping over at the hospital is over.
It is a weird feeling. It’s not happiness because I can’t be with him at his discharge…
But I am filled with thankfulness to the hospital staff.
To the staff at the hospital,
we were so well taken care of, please take care of Hajime until discharge.
Translated by Christine Shirota

Jul 8, 2011

Busy days

From last night, Hajime could not sleep well, so he could not be fully
well in the morning. Also he felt heat of his body. So he put an ice
bag on his forehead with getting sweat a lot on his face (however, the
room temperature was even cold). He did not have fever though... In
this one month time, his body gets heated so much when his physical
condition is not well. So we can see if he is well by his body
temperature. I hope he is not infected to anything.

This morning, a special nurse of ventilator came to get his ventilator
out. But Hajime got panicked because of fear, so he had to put it
again soon. He is very sensitive to the breathing matter and also
feeling very afraid of it.

It is up to his feeling, as I wrote yesterday.

......So, we tried again in the night, and he made it! Around 1hour
and half, he could spend time only with oxygen. Good job!!

About us, we went to see our new apartment. It was very good one, but
smaller and more expensive than we thought. Yet, we were told this
apartment is good deal around South Pasadena city which we live. We
will go to have the contract for the apartment. Well, are we fine
though we feel like this?

So, like this and that, we had very busy day. From the night before I
stayed at the hospital, and came back home by train, went to see the
apartment and came back to the hospital with all members of our
family. And as soon as we got back to the hospital, we had CPR
training. Oh dear, it was really busy day!  Before off to Japan, only
Monday is the weekdays. So, only Monday I can have the training. It
will be busy day the day I depart...

I have to prepare for going to Japan as soon as possible...

Translated by Satoko Okamoto

Jul 7, 2011

Feelings (Mental State) are Important

Well it seems like Hajime will be discharged soon.
The long hospitalization is finally almost over.
Hajime wants to go home so I’m really glad.

But I am going back to Japan temporarily for 2 weeks from next Tuesday.
I’m going to renew my driver’s license before it passes the maximum renewal period of 3 years, but I got the ticket thinking that by the time I go to Japan he’ll be back home, so I am troubled that this hospitalization dragged for so long.

Thus, I can’t be with Hajime at the time of discharge.
I am so worried about that.
And it tugs at my heart that Hajime is the one who feels the most disappointed.
This is truly my fault.
I’m sorry, Hajime.

So now we only have training left for tomorrow and Monday. I am going to give it my all to not waste these two days.

I had training today too, but it took 2 hours and we didn’t have enough time left to do PT or to take off the ventilator. He’s getting used to taking the ventilator off and he is able to leave it off for an hour and a half. It is great progress.

With everything, I can say this, it’s that it’s all up to how Hajime’s feeling. If Hajime feels like he can, he can do it. That’s why I want to keep on encouraging Hajime from now on too.

Hajime is encouraged because of everybody’s warm messages and support.
Thank you so much for always supporting us.

Hajime was calm again today.
He’s enjoying watching a movie right now. With an iPod in his right hand…

I hope tomorrow will be a good day for Hajime again!

Translated by Christine Shirota

Jul 6, 2011

I want to see your smiles...

It is Tanabata - the Star Festival in Japan, today. If we had chance,
I wanted to put my wish on the strip paper. "Please make his disease
to be cured!"

I really pray for him being able to discharge as soon as possible.

Again today, we spent the time with whole family. Hajime's younger
brother, Ryo and younger sister Yuki seem so relaxed when they can see
their big brother's face.

The broad smile spread on Hajime's face is so impressive when Ryo and
Yuki come into Hajime's room. Ryo looks forward to seeing it. There
are no need of words, really. I feel the very deep love between the
siblings when I see how much their heart is related. The love between
them is so beautiful. Just watching them makes me happy.

I am really thankful to God giving those children to me.

Hajime was doing great again at the physical therapy today. I really
think he is doing great when I see him everyday. Gradually he put his
feet forward by himself. But sometimes his eyes are filled with tears
because he is frustrated to his muscles could not be strong enough...

But, cheers of his younger brother had him go forward today again...
There are nothing more than supports and cheers from family.

Hajime, let's make it together!

(Comments of the translator: On July 7th, in Japan, traditional Star
Festival is held. This is the ancient love story based, the couples
live in the each side of banks cannot see each other when it rains.
People wish the day to be cleared, and also give their own wish to the
strips of papers and put them to the bamboos,)

Translated by Satoko Okamoto

Jul 5, 2011

A Day Spent Together as a Family

Today, I took my children with me to the hospital.
Fortunately because he has his own room, they allow children.
And what more is that Hajime seemed very happy.
It was as if he’s at home with all the noise and he was able to reaffirm the importance of spending time with the family.
His brother Ryo helped during physical therapy too.
Just like yesterday, Hajime walked several steps. Amazing!
But Hajime was crying.
His heart rate had calmed down so it wasn’t high but it seemed like he was having problems with his breathing; he coughed over and over and it looked laboring.
Moreover, he was vexed that he couldn’t move.R
He wants to move out of his own will…
He wants to walk more…
Because he’s with his brother, he wants to do things with him.
I felt those feelings coming from him.
Yet it’s important to feel that way, so I am looking forward to now on.
I think he can move more if he continues his physical therapy, even if it’s only for a short time, so I do want him to give his effort.
It seemed like Hajime didn’t want the children to go home. I am hoping that he’ll soon be able to go home with them.
Today, the (younger) children were calm and it seemed like they were having fun too. It’s a period of time where it’s starting to show that they’re stressed so I really think it’s good that they were like this, even if it’s only for little bit.
The children said they want to come again tomorrow so I am hoping that Hajime would feel better.
Translated by Christine Shirota

Jul 4, 2011

Hajime walked 1.5m

Today is the Independence day. The City we live in also had a parade.
Hajime and us watched the parade last year though... I wish we will be
able to see the parade together next year...

The medicine prescribed to Hajime seemed effective a lot. He was much
better from the infection and no fever. So he could spend better day.

Hajime was doing great again while he had the physical therapy
session. Although with assistance, he got up from the bed, walked a
few steps and sat on a chair. His step was very firm.

What made us surprise was him tried not to lean on to the back of the
chair, and bent forward, even he tried several times! Hajime appealed
us that he wanted to walk. And he tried to stand by his own feet. His
hard exercises made this great fruit.

In the end he stood supported by his father. With support, he walked
around 1.5m. It was stunning!

We felt his enthusiasm of Hajime that he wanted to help himself even
little by little, one day and another. Hajime was fighting against his
disease, he's not been defeated. I truly felt it. Again, Hajime
encouraged us. Hajime is really great!

I was really touched by him standing against the disease with the
cheerful smiles. Hajime is not alone. He can stand up because many
people loving him supports him.

After the physical therapy, he was a little bit tired, but still, his
smile was there.

At night, as usual, we saw fireworks. Hajime could not see them in
real, but his father took photos to show him.

From our balcony, we could see the beautiful fireworks.

We sat together watching them last year... Hoping next year, we will
see them together.

Translated by Satoko Okamoto

Jul 3, 2011

Infection Again

Opposite from yesterday, Hajime’s condition was bad today.

They haven’t specified it yet, but it seems like he is infected with something and he has a fever.
At night his fever went up to 101 degrees.

On top of that, his heart rate has been high from last night at about 130bpm.

During the doctor’s examination, we were told that because his pulse continues to be high,
the physical therapy will have to wait until it goes under 105. So unfortunately we couldn’t do it today.

But today he was trying to roll over himself and his body was naturally getting up.
It is the result of yesterday’s effort. It made me think about how important daily physical therapy is.

As I see Hajime in a bad condition like this, I get depressed.

I had Hajime’s voice saved in my cell phone voicemail and out of the blue, I listened to his voice.
His voice that I haven’t heard in awhile gave me that loving feeling.
The voice sounded so different that it made me think, “Did his voice sound like this?”

When I remember about how Hajime was when he was healthy, my tears start falling.
If this was really just a dream…..

This is bad, I can’t stop crying.

And tonight is my turn to stay over.

Translated by Christine Shirota

Jul 2, 2011

Hajime was doing GREAT today!

Hajime made great effort today~!

In the afternoon, he had physical therapy, and Hajime stood.

And he bent forward from the back of a chair by himself when he sat
down and tried to stand up. Even he said he wanted to walk a little


However his plus was over 150... so, he went back to bed.

But his face was bright today. If he can continue like today, he may
walk again in the near future?

After back in the bed, I washed his hair with a shampoo no need of
water.  With clean body and head, he seemed so refreshed.

Yet it seemed Hajime was infected to something again and we are
anxious about it. His secretion was increased and greenish, and smell
showing no good condition.  Hajime also has a little bit of fever.

I hope he gets better soon.

Translated by Satoko Okamoto

Jul 1, 2011

The Anime Expo That He Wanted To Go To

The Anime Expo started today.
Hajime was especially looking forward to this event.
However, he is still hospitalized…We are so disappointed.

Hajime loves Gundam and Macross.
The action figures from these animations, he can’t build them anymore either.
Though his dad promised him, “I’ll make it for you.”

And out of all, “Ai Oboeteimasuka (Do You Remember Love?) from Macross is his most favorite.
He said the song calms him down.

Lynn Minmay (Ling Mingmei), Do You Remember Love?

I don’t know if he’ll be able to go next year because he won’t be able to move, regardless I encouraged him saying, “Let’s go next year.”
Yet he can’t go to Japan, which was his last wish, he can’t go to this Anime Expo, I really felt so sorry for him. Now his wish is to go home soon.

And now from today, Hajime who just had to give up on Anime Expo, is in a different hospital room.
His favorite nurse isn’t here either.
From here on, he just has to give it his all so that he can go home.

Actually, this difference of environment might help him to change his feelings and work out for the better.

Today was a busy day too.

The respiratory therapist came in the morning and suggested trying to take the ventilator off and so Hajime tried with just having oxygen.
But after 20,30 minutes or so he went back on the ventilator. He had feelings of fear and he was crying.
It’s disappointing to think that maybe he won’t be able to breathe on his own ever again.

We had lecture again,,,,very busy, and we were finally able to relax close to night time.

But my children came again today.
Hajime seemed very happy. I am very thankful to Paul and Frank, who brought them.
Thank you very much.

While they were here, he had physical therapy and he was able to stand again.
He was able to give his effort perhaps because his younger brother Ryo was there to help him.
But after about 40minutes his heart rate went up as high as 150bpm so he returned to his bed right away.
He was okay afterwards, but I got a little worried. I want him to try again in physical therapy tomorrow.

I was a mom that worried if he can climb the stairs when he’s discharged.

Translated by Christine Shirota