Sep 30, 2011

Give up

Today we went to his hospital from the evening. But he showed us smiles
and seemed very cheerful. Yet, didn't take shower and he said his head
skin was itchy.

Actually this afternoon, Hajime SMS to me.
"What time are you coming?" "Are you coming with Ryo"?
I am so happy to have SMS with Hajime. When his younger bro, Ryo would
come together, he was so happy and finished, though.

Finishing pickup of kids, now to the hospital!

The communication between Hajime and Ryo is so hartwarming. We really
feel good of it, and even feel so happy.

While they were in the hospital, they were playing games. Hajime longed
for Ryo coming, it seems his joy was increased more.

But after they have returned, Hajime appealed to me that his left
shoulder was painful. His joint seemed very troubled and cried with big
teardrops. He told me by the devices like this.

"I am really scared"
"I am already given up"

He says he is tired of sickness. "So I give up..." He told me many
times. I could only tell him "Let's hung in on there, Hajime, new meds
will be invented, and it will cure you. Till the day, let's fight
against it." "You are doing great, so just as you are is great" I told
him so.

Filled with tears in his eyes, Hajime said "Such a pain (even with
physically) and hard and tough... better to be dead."

How pity... he must be on the edge of his heart... I have to focus more
on his heart to watch him out.

He slept while stretching his body

It is too sad to behold the sadness and toughness of ALS... I feel so...

Translated by STK

Sep 29, 2011

The wheelchair is coming on Friday

Hajime had on his energetic face from morn. But I think his secretions are increasing day by day. I think Hajime notices the change too. I am keeping in mind that I have to suction more frequently.

Hajime’s personal wheelchair was supposed to come today but we got a call saying that it’s not coming today. Hajime was getting ready for it. So it changed to 4pm on Friday. My husband got off work and came to the hospital for this so this is very troubling. I’m thinking that Hajime was disappointed too.

But, to compensate we got Hajime a Xbox and we put it in his room. From now on Hajime can play games whenever he wants to.
Let the games begin!
Compared to last time he is able to control the games better with his toes now.
I’m so amazed.

I’m so glad that there are things in his daily life that Hajime can enjoy. I am so thankful to God for giving him these opportunities.

Oh, please take a look at this picture.
It’s a letter that Hajime’s sister wrote for Hajime…

Yuki wants to play with her brother again.
She says “When brother gets better, I’m going to play with blocks with him.”
She is waiting for him to come home.

She wants to sit with him on the sofa again…I hope that wish comes true!

Translated by CS

Sep 28, 2011

So cute!

Hajime was so tired today.

When I got to be in time for the meeting,
Hajime was sleeping like an angel with a lovely smile!
I felt guilty to wake him up, so I let him sleep.
Meanwhile, a speech therapist and nurses continued to visit us one after another,
but Hajime kept on sleeping.
Even when CNA came to askif he would take a shower or not,
he was silent.

But at one point, I thought, "something is funny with him",
and called his name from the side of his face.
Hajime opened his eyes as if he woke up suddenly for the first time,
but he was grinning unnaturally.
I found out he was absolutely AWAKE all the way!
Again Hajime acted like a little boy.
He's so cuteラブラブ

In today's meeting, we talked about
a custom-made wheelchair arriving tomorrow to be used by Hajime only.
Finally we've got one.
Since Hajime has been reluctant to wake up these days,
we hope he will like his own wheelchair and ride it every day.

His weight increased again and now he's at 112lb.
How wonderful!
But he says he wants to gain more weight
so that he would not hurt his tailbone.
We are so happy about this weight increase.

We talked about the following matters.

We will have to decide to leave hospital,
and we have to talk about 24-hour training.

Today, he's bleeding from the trach tube.
We hope it's nothing but we are worried about it.

Translated by YT

Sep 27, 2011

I will try to catch up asap

I took Granny and Auntie and Yuta to LAX. 2weeks have passed like a
moment and Hajime must feel so sad about it. I really wish them coming
to see him again.

This stay was funded by Mr. Stu, who gave us budget going back to Japan,
and we used it this time. But I really want everyone's help so that they
can come to the States again. Please please cooperate with us. And those
who give help to us, thank you very much.

After finishing seeing them off from the Airport, went back to Hajime's
hospital. He welcomed me with his warm smile as usual.

"I sent them off. They said they would come again, so let's wait for
another time" and he replied with us with smiling blinks.

And we talked about the future with Hajime. Firstly, about discharge.
There are two options. One is to go home. Demerit is this would not have
help from nurses. The other is to transfer to another hospital for long
term having 24hours care. What Hajime wanted was to "Go home."

Now it is difficult for us to hope for the care nurse. So my husband and
I have to take care of him. With having another 2 children, it must be
very difficult and troublesome, but we will do our best. For hiring a
care nurse, our budget is shortage... again, but we need your help.
Sorry but please help our family!

The other thing I talked with Hajime was if he rely on our decision
about treatment. If he wants to have the informed consent, he needs to
have explanation of each situation in each steps. It is going to be a
matter if he wants to know. About this, Hajime told me that he does not
need to have explanations about every single matter. He said he would
know gradually when time comes. But I told him, although the decision
would be done by us, he can reject it, and we would not force him to
obey to us.

The most important thing is to let him spend happy days.
So, we have to stand firm, I thought again

Translated by STK

Sep 26, 2011

Parting with Grandma

The fun days go by so quickly. Today is the last day that Hajime can see his grandma, aunt and Yuta.

Thank you Grandma, Auntie and Yuta!

To take his mind off of his sadness, Hajime was playing games or watching Ryo play games. When they were leaving he said his good bye with a smile.

But as soon as they were out of the room, Hajime was crying. He was probably trying not to cry in front of them so that they wouldn’t worry. He is a very kind child.

Hachan, Grandma will be coming back real soon to see you again.

Translated by CS

Sep 25, 2011

Hajime is on Rafu Shimpo again.

Reunion of Grandma and Hajime was on the today's Rafu Shimpo.

Glad to See You, Grandma

The fantastic sentences in the article was by Ms. Nakamura, the reporter
of Rafu shimpo. She took very good picture with good face.

When I tried to show him the article in a website, and I put into tobii
Hajime used, Hajime gave a glance and appealing "It's ok, enough," to
me. It must be because the favorite grandmother would go back to Japan
after tomorrow. It would remind him of the good time with her.

I really worry about tomorrow.

Thank you everyone for your supports. Hajime is doing his best everyday.
Please keep watch over him from now on, too.

Translated by STK

Sep 24, 2011

Connected Feelings

There are only 3 more days that our relatives can stay with Hajime. 2 weeks go by very quickly. Hajime seems sad thinking about the day that they are going back to Japan.

Today we talked with the nurse about now on. Various things within our conversation made me more anxious and I couldn’t stay around Hajime that much today. Because I start crying when I see him.

Hajime wants to be with me but…I’m such a bad mother.

But I followed through with the trach exchange. It was my turn today so I was nervous but I gave my effort. I think Hajime was doing better than last week. But his heart rate was fast even after and he seemed like he was having a tough time. After all, exchanging the tube is hard on him physically and mentally.

Late at night, Steve came again. He showed us the drawing he drew for Hajime.
Today’s drawing was this.

We are so grateful of Steve who does all these things for Hajime out of love.
Thank you so much!

Hajime looked sad when he was leaving.
He looked like he was trying to hold it back, but tears were still falling.
And he seemed angry at himself that he couldn’t move.

When I see Hajime like that, I understand what he feels immediately and I feel helpless.

When Hajime wants me to put out my hand, he gently puts out his foot to me. And when all I could do is just hold his foot and look at him, I feel so powerless.

Translated by CS

Sep 23, 2011

Much Secretion...

For yesterday's article, some people gave their views to me. Thank you
very much.

Although I am a mother, still a human. It is difficult to be strong,
although being said that I should be strong, of course. I do not cry
over in front of Hajime everyday. So I will walk this path with my own
pace. Best thing is not being nervous too much, as things are going to
be long way.

Hajime had a short breath today again, several minutes before we reached
there. Although Hajime does not want it, secretion is increasing. This
became an issue at the meeting, and resulted to have suction every 2hours.

The biggest anxiety of Hajime is secretion. Today was really bad. And we
worry if my husband and I can do quick treatment for him.

Translated by STK

Sep 22, 2011

The Mother Has To Stay Strong

I had an appointment at my hospital today.
Afterwards, from noon there was a ventilator training at home.
I have to go through with this training several times.

There are tons of things that I need to learn, that changes, that needs to be done and I think I know about the ventilator, but then again I’m not sure of some things. I want to completely master it.

I headed for the hospital after I picked up my children, but I enjoyed chatting with Hajime on FB again till then. Because I don’t have an iPhone, I can’t use Facetime. So I chat with him instead but it still makes me happy to chat with Hajime. Although we only use a few words, I think I get a good grasp of how Hajime is doing.

When I got to the hospital, Hajime was in a lesson with his teacher from OC.
The children were trying to get their homework during that time, but because they had so much homework, they couldn’t go to Hajime’s room.
I spoke with Hajime during that time.

We talked about things like this.

Hajime likes AKB48(Japanese idol).
This is the first group that Hajime liked from the Japanese Entertainment Industry.
I’d like to somehow set up a meeting with them.
I’ve once sent a message to their blog, and perhaps they thought it was some sort of prank, I haven’t received any response from them.
If anybody that’s reading this blog has any information regarding them, please help us.

And 30 minutes later, my husband and I talked to the doctor.
When I told the doctor how I’m depressed because of what I heard from the doctor about now on,

“The mother has to stay strong. And you have to show Hajime that strength. And then seeing his mother, he will be comforted…”

He said something like that.

I think I know that in my head, but I’m still scared that I’m going to show my weakness.

What about you?

I have to stay strong so that my son will be comforted! This is a new task for me.

Translated by CS

Sep 21, 2011

Is he feeling something?

After the shocking matter yesterday, I totally got out of condition.
I've got a high fever suddenly, suffering from weariness.

Meanwhile, Hajime, who can't be aware of the fact,
is quite depressed as well.
Is it because he's heart is connected with his mom?

The secretion is getting worse day by day.
I'm so worried.

Whenever I think of Hajime, I couldn't stop tears.

This is a yard in the hospital.
We can see outside from Hajime's room.
I hope he gets better soon so that we can take a walk together again.

Translated by YT

Sep 20, 2011


Today, we had a meeting about hospice for Hajime.

Medical team of the current hospital had discussion and the discussion
resulted Hajime was in need of hospice considering the progress of his
disease. And this was why we had today's meeting.

The hospice in the States means a medical care without hospitalized. So,
when a patient is considered to have their left life is less than
6months, s/he can be provided the hospice care. We talked a lot more.
But I do not remember many.

The shock was caused because of the topic of life expectancy. He is
still fine, and recently he started to use his toes for doing
everything. I was just simply sad and sad when I thought of that...

I am speechless now...

Translated by STK

Sep 19, 2011

The Radio Control Tanker That He Loves

His fever from yesterday finally came down and today it’s within 98 degrees range.
His not fully recovered yet, but I’m a mom that feels a little better just because the fever went down.
His grandmother was worried about his fever too, so we’re really comforted.

But he has a lot of saliva and we’ve been suctioning it repeatedly.

Last night, because Hajime also wished for it, we bought him a radio control tanker.

A few days ago, he was watching a radio control tanker in action on youtube over and over again.
That tanker can also shoot missiles and it was a video that even I thought was cool.

Hajime liked radio control things since he was a young child. Now I regret it every day that I didn’t get him earlier, but finally the day to let him play with it came.

Hajime was very excited.
We put the tanker on his bed and the way he used his foot to maneuver the controller like always was awesome.

He used the camera and Facetime on his father’s iPhone and iPad, and controlled the tanker under his bed.

Hajime looked really happy controlling the tanker.
But what was even more impressionable was my husband’s expression that showed enjoyment.

(small lol)

Translated by CS

Sep 18, 2011

Hajime got fever…

As the fever started since the last night, Hajime was not in a good shape and limp all day long.
I am worried as his heart-rate was close to 140 and his fever went up to 38 degree C (101 degree F).

It varies by countries how to take care when got the fever.

In case of Hajime this time…
In order to bring down the fever, we put Pedialyte, which is therapeutic hydration for child, to a tube, which goes to his stomach, and it indeed allayed his fever. However, the fever went up again quickly. Hence, we put the cold towels on his forehead and axilla, and kept him lightly dressed. Then, we were recommended to take him to the shower and we did… This is the opposite what we do in Japan.

He lost his strength and kept sleeping in the morning.

In the afternoon, Mari & Miranda came to see him. However, Hajime kept sleeping…

This coming Saturday, there is the event called “Ride to Defeat ALS” where people ride on the bicycle and run such long distance as 62 miles for fundraising. Mari is going to participate in this event for Hajime!

Ride to Defeat ALS

The following day of this event, 25th, is Mari’s birthday. I am very much impressed that she is going to run for Hajime. I realized that we were very happy to have such wonderful friends who support Hajime and our family.

Right before Mari leaves the hospital, Hajime waked up and responded to her with smile.

I hope Hajime’s fever is going down soon but I am still worried. As we took the secretion for sampling, we will know in a few days if Hajime is infected or not.

Translated by RM & YM

Sep 17, 2011

Having a connection

Recently, maybe from the exhaustion of these 3 months, I’m having a hard time thinking of anything to write on the blog.

Yesterday, Ms. Nakamura from Rafu Shinpo sent me the picture that she took, saying that it’s a great shot. Please take a look.
You could see how we have a connection right?

A mother and child are deeply connected.
I could tell what he’s thinking with eye contact or a little conversation.
I love my children so dearly, so dearly,,,

Today’s the weekly trach exchange day.
Hajime got the medication to calm his nerves, but he had an even tougher time today.
There were so many things that happened right before it, so Hajime was nervous.
A trach exchange through that was very difficult for Hajime.
Today, his father did the exchange though.

Later, Steve brought another drawing.
The drawing today was wonderful again.

Thank you so much for bringing the drawings all the time.

And after that, he was playing games on Xbox again.
He’s getting used to using the controller and it looked like he was having a lot of fun.

Translated by CS

Sep 16, 2011

An Interview from Rafu Shimpo

We had an interview by Rafu Shimpo --

We tried to be there around noon. But Hajime had the bath time at that
moment, and had an appointment of PT session at 1 PM. So, it was a bit

While that time, Nakamura san from Rafu shimpo asked us about what has
happened so far. We never looked back about this 3months because were so
busy to do it. Yet, when we think about it, we notice we have passed
many things...

And my mother and elder sister was replying to the question "what was
the biggest anxiety amongst everything?" saying they worried about me
the most. I really thanked them worrying about me that much.

After that, we went to Hajime, and started an interview to him. Hajime
must have been tired for many reasons, but he replied with smiles for
the whole interview sessions.

During the interview, we showed how he did for conversation by tobii,
browsing Facebook through iPad and things like that. It seemed like he
was appealing how he had fun, encouragement and cheers with what.

After the long interview, Hajime seemed happy with seeing our relaxing

More than anything, because visit of Hajime's favorite granny and auntie
sis to the States was his dream, we really appreciated it came true.

To Mr. Stu and everyone, with their support, their visit to the States
came true. I am really happy for this.

I really thank you to all of you. Really, really thank you very much.

(Translator's memo: Rafu Shimpo is a newspapers for Japanese residents
in LA. This newspaper interviewed to Hajime in the past, too.)

Translated by STK

Sep 15, 2011

An Important Friend

Today is the second day since grandma has arrived and I went to go see Hajime after I picked up the kids.

Hajime had his usual smile and when he saw his grandma his smile got bigger! I thought he must really be happy.

He doesn’t have much of a health problem right now but he was bleeding from the place where the trach tube is inserted. It seems like he’s been bleeding from the morning but I think anybody would worry if there’s bleeding like that.
I wonder if he’s okay?
RT said it’s fine because there’s not much of a problem.

And Hajime’s been refusing to get an immunization shot to prevent him from getting pneumonia since 8/11, but he said he’ll go ahead and take that shot. So brave of him!
Everybody hates shots, right?

In the morning, Mama Sue and Ashley came and brought over the video that they took at church last Sunday.
There was a message from Hajime from each person and Hajime happily watched that.

I think it’s awesome that Hajime has many friends and supportive friends.
It is perhaps because of everybody that Hajime can spend each day lively.

Thank you so much!

Translated by CS

Sep 14, 2011

Dreams Come True!!

Today, Hajime's granny finally visited him all the way from Japan,
which Hajime has been waiting for all the time.

Granny and my elder sister were shedding large teardrops
once we saw him.
Hajime was looking at us with a gentle smile that shine upon our heart.
It was such an impressing reunion.

To tell the truth, I wanted to see them long before.......
I wanted to see Granny and my elder sister
with our whole family......

His heart was filled with such a complicated emotion,
and he was nervous.

For 2 weeks from now on, we hope he and Granny can share
and cherish every moment together.

Please, God,
please give them a precious time.

Translated by YT

Sep 13, 2011

An Anxious after discharge

We got a crack in our car window, and it was expanding. So, we took the
car to fix it again. Therefore, it took a while to go to the hospital

Hajime has done some Facetime with Papa, and I have heard the position of the cam was not so good. But his toes were so active, Papa said. He asked Hajime "did you take a bath?" and Hajime replied a thumb up with his toes saying "Yes, Dad." Woonderful!

Day by day, by doing communication with his toes, Hajime is getting more cheerful. I am so happy seeing him. It is really inevitable to take communication with people around, I thought again.

Today, we talked about discharge with Hajime.

We have applied to the Medi-cal insurance. But it was rejected because we have not been working for 10 years by the time our child became 18years old. We could get the Green Card soon after we moved to the States, and that was much earlier than usual. Even the hospital was surprised about it.

Therefore, we could not arrange anything for 24hours care. We do not have enough budget for hiring nurse. Hajime wants to go home and gets discharged, but he has contradicted feeling because he is afraid of the situation now, if he does. My husband and I are ready to take care of him, though.

I hope everything goes well...

Well, Hajime's Grandmother he is longing to meet to is coming from Japan. Hajime seemed deeply happy. This was the wish he had long time...

Translated by Satoko Okamoto

Sep 12, 2011

Participating in a wonderful event

We received Facetime from Hajime again today.
When we wave our hands, he waves his foot.
I think now that he’s starting to be able to do various things with his feet, his daily life is probably changing.

After the emergency hospitalization, getting a tracheotomy, getting a lung disease and getting operated on, not being able to move, having tremendous pain all over, Hajime who didn’t even have any hope in living is challenging his self to do new things everyday and is enjoying every day.

Thank you to everybody who’s been supporting and encouraging us!
Because of everybody’s prayers, Hajime is able to have more and more hope to live.
Please support us from now on too.

Today the people from the youth ministry at church came.

It is so wonderful to have laughter in Hajime’s room.
When I see Hajime’s smiles, I think I understand how much joy he was feeling.
Thank you so much for coming from a place so far, everybody!

After that there was and ALS event, so we went to a place called San Juan Capistrano with the family. Everybody was doing fundraising for the ALS patients there. And in there, people were working for Hajime too.

Stu Milheiser and Lisa Marie Jones-Wylhlidko organized the event.

ALS Guardian Angels

Stu is the person that made our wish to go to Japan come true but because of the lung disease after the hospitalization, we couldn’t go to Japan. But in place of that, Hajime’s grandmother, the person that he wanted to see, is coming from Japan this Tuesday.
Thank you very much Stu.

The event that happened tonight was a wonderful event.
I was able to meet many people and listen to them.
We had a nice dinner and had a very worthwhile night.

There was a time that they showed Stu’s video and when they showed Hajime’s video, I could not stop crying. And there were so many others with ALS on this video and when I think about how all of the families must feel the same way I do, it’s painful.

The thing that most surprised me was that even with the tracheotomy, many people passed away. I was disturbed. I thought that if he has that tube on, we escaped the fear of death…..

But, Hajime will be fine! I thought strongly to hold on to that hope.

Translated by CS

Sep 10, 2011

I like his childlikeness

Hajime smiled at me, who’s been sleeping over two days in a row.

When I see this smile, I really get energy seeping up from the bottom of my heart.

Hajime still acts like a little boy a lot of times.
When the CNA came in to shower him, Hajime acted like he was sleeping. He did it skillfully so the CNA was completely fooled.
“Wow, he’s still sleeping” and the CNA left the room once.
And Hajime opens his eyes with a smirk on his face.
So I said “Oh, you were u~p”.
I like this childlikeness about him.
And the CNA that came later said, “Hey, you’re up!”And we all laughed.
It makes me happy when the sound of laughter fills the room.
This too is because of Hajime.

In the morning he was enjoying youtube using tobii.

Hajime’s like this here, but he had a tough time in the afternoon.

Today, after he studies with his teacher, he had to get his weekly trach exchange.
Today was his father’s turn.
30 minutes before the time to do the exchange, he got medication to relax and through that time his father was nervous. He was asking me, “What order was it?”
But when it was actually time to do it, he changed the trach tube like a pro. Wow!
Good job!!
On the other end though, Hajime had a very tough time because he was so scared.
After the exchange, he was exhausted,,,,,.

At night, his heart rate went over 140 and he looked like he was having a hard time and I,,,,.

Tomorrow everybody’s coming over to help me unpack so I couldn’t stay over and I came home, but I’m worried about Hajime. I wonder if he’s okay.

Translated by CS

The controller is used by his toes!

The MANY carton boxes... Today, my friend came to help us unpack the
carton boxes.

This made us late to go to the hospital. But Hajime has called us using
Facetime of iPad. And we enjoyed communication with Hajime using
Facetime of Papa's iPhone.

It is really amazing! I was really astonished by Hajime's greatness. I
was so excited when he contacted me through Facebook, but this Facetime
was worth to standing ovation.

After we went to the hospital we did some video games again. Of course
Hajime was enjoying it using his toes to control the controller.

Isn't is great that he can fight equal agains to his younger brother,
Ryo? Hajime is the one knowing from A to Z about this game!

Ryo was enjoyoing being taught many ways to enjoy. When Hajime is going
practice more, he can do more and more things... Yes, I am the mother
again amazed by her own son.

Translated by STK

Sep 9, 2011

Somewhat not fine...

Today's Hajime was not really fine. It seemed he was really tired because he was not really well in his physical condition.

After 11Am, we had an interview with Medi-Cal people, he went to shower earlier, around 10AM. I was doing Ambu bag for the whole session, during the shower. It made my hands in pain! Because it moves lungs for breathe, it needs a lot of spring power. I considered it too easy, now I knew.

After the shower, the interviewer came to Hajime's room to ask his disease in details. It is very difficult about Medi-Cal, so I really hope this programme goes well.

After that interview, a speech therapist came and see how Hajime use tobii. The therapist was amazed when Hajime was using well with the eye control to type and see Youtube.

But it takes a little while to confirm the alphabet, for Hajime, it seemed easier using his toes.

Today it was more than usual we had suction from his trach, and the secretion is thick. I hope his Oxgen level would not get decreased.

Tonight he got early sleep again. He is taking Meletony, which lasts sleep, and it seems he can relax when he takes it and gradually getting into sleep. With having chat screen of FB in front of himself - :)

Translated by STK

Sep 8, 2011

It might be an infection again.

For the past few days, his heart rate is higher than usual and more fluids so we’ve had to suction it out many times. The fluid is thick so we suction it over and over again.

He might have a slight infection.
The color of the secreted fluid is a bit greenish, there’s more of it and his heart rate is up.
There is a possibility of an infection, I believe.
It might be from the lethargy that Hajime’s feeling that his exhaustion stands out.
Today he had too much fluid, so I guess they didn’t have the PT either.
I’m worried about when he gets home.

The new semester started and the teacher from Orange County comes to visit Hajime. He only had 30 minutes to spend and today they did math on the tobii together.
…well, they were very simple math problems.

I was really glad to see that his daily life that consisted of watching TV has sort of changed into a life with a little bit of studying.

Steve came by again.
He always comes with a beautiful drawing that he drew for Hajime.

Hajime was very interested in this wonderful home schooling.
Steve, thank you so much!

Hajime slept early tonight, I wonder what kind of dream he’s dreaming about?
He must’ve been tired from the many things that happened during the day. If he can’t sleep at night too, he’s going to be too tired.

I wonder if he could spend tomorrow in good condition?

Oh yes, by the way, that bug is still in the restroom.
I wonder if they sprayed it.
…….I was an anxious mother as I slept next to Hajime.

Translated by CS

Sep 7, 2011

Outbreak of Insects

Hajime was in good health today as well.
Until I came, he was playing with FB.
We were able to chat, "I can be there around noon today".
It's so nice to have a communication like this with Hajime.

Above all, I find it great that he learned to handle tobii freely.
I've heard that he has mastered how to control it with his eyes.
That's how he practiced on and on, and now he can access Youtube
and see the videos there.

By the way, let me tell you something frightening...

Many insects broke out today.
They were bugs with wings, and I found a lot of them in the public bathroom.
They were around the light on the ceiling, and those bugs were flying even in the rooms.
I was really surprised.
I was in a big confusion but anyway, I called a nurse.
After that, came a person who is in charge of exterminating bugs.
H got a sample, and came back saying he would kill those birds with insecticide tomorrow.

The insects came to the beds we sleep on.
Sadly, we had to give up staying at the hospital today.
Sorry, Hajime!
We have to be patient until they are going to get rid of them.

Anyway, isn't it strange that a lot of bugs break out in a hospital?
Besides, I wish they could have dealt with it more immediately right after such an accident happens...

Translated by YT

Sep 6, 2011

To be independent

Today is a holiday, Labor day.
But for Hajime and us it was no different than any other.

For the past few days, Hajime has been spending the night by himself.
I have been exhausted so I have been allowed to go home.

But maybe that was good because Hajime can shower now without us being there.
This is a progress that the nurse was even surprised.

Hajime’s independence in the hospital is a big step forward. Communication with the nurse and the doctor is very important.
And if we continue to keep telling what Hajime wants to say, his will and anything else will not be conveyed to others any longer.

Hajime get’s medication because he has difficulty sleeping, but truthfully he just wants to do facebook on iPad because the time to go to sleep is early. But because he thinks that he’ll get in trouble if he says so to the doctor or his father, he won’t say anything.

He told me secretively, but at times like this I feel like just telling his doctor and his father. But it’s best if Hajime does this type of communication himself. Or else he won’t be able to communicate and build a relationship of trust.

I told Hajime, … to go on and tell the Doctor himself next time. I told him that the doctor and everybody around Hajime are thinking about how he could spend his everyday comfortably so if Hajime says that he wants to do it a certain way, they’ll think of it accordingly.

So the rest is up to Hajime.
It would be good if he just talks to them when we’re not there or something.

Oh yes, please take a look at these pictures.

His sister loves her big brother dearly, and to communicate he puts his foot on Yuki’s face like this. This is Hajime’s expression of love.

When I see this, it makes me happy.

Everybody loves him.

Translated by CS

Sep 5, 2011

Can't find the wrist band!

We had a lot of visitors today. Hajime seemed really happy.

His Hischool mate was so amazed and interested in Hajime playing games
with his toes. Everyone was excited about. Look, their eyes are looking
at the game screen downwards.

I feel so happy for Hajime feeling he wants to do something by his own.
It must be because he got some space for his feelings. Maybe because
though iPad, he can communicate with friends, he got more confident in
himself that he can do something like this.

Yes you are still very potential! As his mom, I think so.

On the other hand, we had very sad news. The wrist band he really
treasured was lost. He even does not remember when, and being shocked
significantly. Maybe a nurse or a CNA of the night shift threw it away.

This wrist band was a precious memory of Hajime when he visited the
location set of "glee." He needed to put it on when he enter the place.
Since then, he put it all the time, when he was hospitalized, during
operation, we assured to the doctors saying "please do not cut or throw
it away, it is precious for him."

Not only Hajime, of course but we were really shocked.

But the memory is always in your heart.
No one can take it away... you can hold it in your heart...

I told Hajime as if I told to myself.

But it was really shocking anyway...

Translated by STK

Sep 4, 2011

Exchanging the trachostomy by myself

Today is was that weekend again and I was worried, but a good nurse was working today so the day went by peacefully.

Usually, Hajime doesn’t shower when we are not there, but today he did even if we weren’t there.
I was really surprised! It was good news.

Last night we both went home, but because we have so many things like boxes to unpack and other various things that we have to do, we get to the hospital late no matter how hard we try to get there earlier. We’re grateful that Hajime is very understanding of such matters.

As soon as we arrived we had to exchange the trach tube that we couldn’t do yesterday. First we get the medicine and 30 minutes later we do the exchanging. Up until now one of us pulled the tube out and one of us inserted it. But today one of us had to do it on our own and it was my turn so I was very nervous. But I was able to do it just fine.

First I get the tie of the trach ready and then check the cuff by inflating and deflating it. Next I put a watery gel on the trach. And then as I take the trach tie off, I get ready to take the ventilator off and I deflate the cuff. At that time there’s a lot of fluid that comes out of his mouth so I suction it right away.
Right after I quickly take the ventilator off, I take the old trach and insert the new trach. And I quickly put the ventilator back on. And get air in the cuff and inflate it. Then tie the trach, put some gauze in.
And I’m finished!

I was pretty nervous, but I’m glad it was over without a problem.

Hajime was very nervous, and he was sweating profusely. For Hajime it seems like today’s the worst day, weekly. But I think there’s less infection ever since he started to do this trach exchange so it really is an important day.

Translated by CS

Sep 2, 2011

Managing of the Medicine?

The maker of tobii came today and made many adjustments.
There’s a stand for the bed, but it was too low and we thought that it can’t be used on the bed, but we found out that we can use it in a different way, so Hajime was able to start using it.

Using the eye system, he was able to enjoy Youtube, take pictures and have conversations.
He still needs some time to get the hang of it, but seeing him being able to talk to the nurse using tobii, I felt glad.

After that, Paul came to the hospital.
He brought him a wonderful gift and Hajime seemed really happy!
He has a special appreciation of gLee and he still hasn’t taken off the wrist band.
Thank you so~ much for the wonderful present!

Every Friday is when we exchange the trach tube.
I headed for the hospital after I picked up the kids from school, so it was dusk.
Right after I arrived, Hajime prepared his heart for it right away and when we were ready to go we called the RT.

Hajime was supposed to take some medication from 30 minutes before the procedure starting from this time because he has so much fear. So we asked for the medication. But no matter how long we wait, the medication didn’t come,,,and when we asked the nurse, she just said “We’re looking for it now” again and again. The time was past 6 o’clock, but the medication still didn’t come.
Well, it seems like the medication that they had ordered came to the hospital once, but they sent it back. And they ordered for the medication to be delivered again…is what they said.
After that, the RT came in to tell us that it was scheduled to be delivered at 7pm.
But it didn’t come on time.
It didn’t come after 8 o’clock, it didn’t come after 9 o’clock.

I question this.
They knew that Hajime’s scheduled to exchange his tube today from this morning, so why did they realize that they didn’t have the medication until late in the day? Hospital management isn’t done properly. I don’t think this type of mishandling should happen in a medical facility. Management of medicine is critical! Even though Hajime felt scared, he finally decided to do it, but because they didn’t have the medication, we couldn’t exchange the tube.

I want to hurry up and take him home, but no such plans in the near future.
Unless we get that medical…..

Translated by CS

Speech with Eye-System

Oxygen had been suddenly decreased last night again, and we rushed for suction. It happened about 2 hours after he fell into sleep. I am worried about this to happen again… We spoke to Hajime that we would do suction every 2 hours through the night as the therapist suggested. He consented and smiled, even though it shall keep bothering him and not allows him to have a deep sleep.

It is not confirmed yet when we start this, but hopefully this helps Hajime keep breathing.

Today’s PT was conducted in combination with ST, and the speech-therapy with staying on a wheelchair started. We brought a stand from home to hold “tobii” and use it. It worked out really good!

By catching Hajime’s gaze, this can make a long sentence and even speak over. Now, we make good use of the eye/ gaze system. Hopefully, we can utilize this system better after some practice.

Hajime played the video-game afternoon. He can play with his toes. This is really amazing. As you may know, there are many buttons laid on the Xbox’s controller, which is small and the palm top size.

Without looking at these buttons, he can control only by relying on his toe’s sense. He also changed the button setting/ functions via the set-up menu to make a good fit to him.

In the evening, his daddy and brother came to the hospital after the school and Ryo & Hajime played together. I am very impressed.

There is one concern… His heart rate was increased up to 130 when he played the game and very much excited… So I cannot let him play before he goes to bed…

In these days, Hajime is getting much better to use his toes.
I saw the blog written by ALS patient a while ago and learned the blog was updated only by toes still working. Today, Hajime is doing this! More than anything else, I am so happy that Hajime now has something interested that shall help him keep energized.

Translated by RM & YM