Dec 28, 2011

Good news

The great news just reached to me. Without loosing a hope and believe in God, miracle will happen.
I’ve let Hajime know right away this news. Hajime was listening with tears.

Hope for the best for the hard work of the research teams.

*******************************************************************
Kyushu University and Keio University research team on Dec 27, amyotrophic lateral sclerosis incurable diseases (ALS) in mice were elucidated announced the development of mechanisms.
Muscle atrophy caused by degrading of enzymes in the spinal cord nerves and increases and accumulates of the amino acid D-Serine. "If we can find a way to increase the activity of enzymes, development of new medicine can be expected". Research was published on Proceedings of the National Academy of Sciences of U.S. (electronic version).
ALS is a disorder subject to neurons motor muscle in the spinal cord, the disease progressively loose the strength in the muscles of the whole body. There are about 8,500 patients nationwide in Japan. Detailed cause is unknown, no curative treatments were found.
The research team used the mice that received the genetic experiments that impaired motor nerves of the spinal cord just like ALS. Examined the amount of amino acids in the spinal cord, and found that the D-serine increased three time than healthy mice had accumulated. In addition, "DAO" that suppress the D-serine, also decrease to half.


(Translated by HM)

Dec 27, 2011

The sound of the violin

Today we had a surprise. Mark’s brother Brian came to our house and played his violin. I was very surprised with this wonderful present.




It was very beautiful sound.
He played several Christmas number. He told Hajime that he will be back if he have a favorite song to play for.

We also thanks to Alice who brought her two boys here.
Thank you!

(Translated by HM)

Dec 26, 2011

Christmas

Today is Christmas. We were worrying that Hajime did not looks he wanted to have Christmas. But it turned out that we were wrong and he was actually looking forward pretty much.

Last night, Dad was on duty to take care Hajime. Hajime first wake at 4am and say to Dad,

“Merry Christmas”through tobii.

Around 6 am, Hajime call Dad again and wrote “Tree” on tobii.

He asked to take a look for his presents at the Christmas tree.
He was waiting for dawn to breaks.
Dad opened the presents and read cards for him. Hajime literally did two thumbs-up with his feet.




Hajime got a many Xbox points, DVDs and T-shirts.
Yuki gave a scarf for Hajime. She made it at holiday workshop at her school.

Our kids open their present around Hajime and all had a wonderful moment.
















We were so happy Hajime had a great Christmas.

Translated by HM

Dec 25, 2011

Present from ALSGA

It’s almost Christmas. We did some Christmas decoration to our house but I don’t feel like Christmas is coming. But of course, our kids seem to waiting.

The ALS Guardian angles/Stu who always help us give a Christmas present to Hajime.
Lately what Hajime enjoy is limited to watch TV, play games, read email or Facebook so I’ve requested the Xbox points for the Christmas present. He accepts our request readily.

He is really like an angle to us.
Thank you so much!

My wish for Christmas is to have a medication that cures Hajime’s disease. Oh, please God,,,


Translated by HM

Dec 24, 2011

Just watch me warmly,,,

Most of the time I doing okay but sometime like I wrote previously, I torn by sorrow. After I wrote such kind of things in blog, in some cases I got comments and suggestions that I should be stronger and be positive. I understand that they are saying for the encouragement and I know negative feeling is contagious to the surrounding. But sometime I struggle with sadness helplessly. If I’m writing such kind of article again, please just warmly watch and understand.

Hajime is doing well. Although, I’m little worry that he is sleeping a lot at the daytime. His legs muscle weakness make him tired easily with playing games. Because of that, he just not doing anything and after a while he fall into a sleep. He just doesn’t feel to do anything when his is tired. It’s become our worry.

Every Thursday, nurse from the palliative team visit Hajime.
Nurse was planning to come at 4pm so I wanted to finish the bed bath before. The person who do the bed bath told us that she will come between 1 and 3pm but it turned out that she came around 5pm. It was quite hectic time to have a conflict visitors.

Today, Debbie (the church pastor) also visits Hajime.
She talked about her recent visit to Africa and showed some photos to Hajime. It was very interesting to hear a story about Africa.
Debbie lost her first husband to ALS.
She must have a very difficult feeling but she come to pray for him and encouraged him. I was very pleased.

At the night, Hajime was crying and said to me “I feel lonely”.
So many things in his mind probably bring up in his night dreams.
I told him “don’t worry. I’m always right next to you” and stay next to him till he fall back to sleep. So sad,, he feel lonely even we are so close each other.


Translated by HM

Dec 22, 2011

Heartrending sorrow

I’m trying to spend each day with a smile. Even I’m tired, at least in front of Hajime, I’m trying to keep a smile.

The things which happening to me sometime makes me feel like “Is this real?” The reality is too hard for me,,,
Hajime used to laugh right next to me but now he only can spend on a bed. I just can’t bear to face the truth. If I do, I probably collapse in tears.

I’m always facing with this kind of thoughts lately.

Everyone is spending a warm holidays with their families. I’m feeling like I’m only one get left behind. Within a silence, tears just drop from me.

Well,,, of course our family is blessed and happy. We are all together at home now.

I want to be with Hajime forever.
I want to share my heart with Hajime and my family.
Probably having this kind of thoughts itself is blessing.

Recently I wrote about Yuki. Yuki like to play with her dolls.
She is playing with her dolls and says that her dolls are sick and their hands and legs don't move.
Probably, her worry to Hajime is reflecting to her play.
Right now, her thought to Hajime is getting even strong.

I pray for God. Dear God, be with Yuki and heal her worry.
Please be with our family and give us strength.

And of course, all the best wishes to Santa too.


(Translated by HM)

Dec 19, 2011

Christmas Carol 2

Hajime is doing pretty well for past few days.
However, it gets me worry that his leg muscles become even weaker.
He can’t play game with his knee up anymore.
He is now playing a game with his left legs lying down.
He probably notices that he can’t use his legs sometime soon. That makes him difficult and mixed feeling.
I’m hoping that he could use his legs as long as possible.

Tonight, many people from church youth group and their friends come to sing Christmas Carol in front of Hajime’s room.









I was very touched seeing so many people were singing for Hajime.
Thank you so much everyone!
Although, Hajime was a bit depressed. He would rather sing with them than listening. He was actually crying,,,
All I could say to him was “Let’s hope for a day sing together with them.”
Because Hajime was a person that loved singing more than anything, it makes him a bit difficult feeling.

Letter that night after Hajime slept, Yuki was sitting next to him in a dark. I asked her “What are you doing?” and she told me that “I felt Hajime is alone so I’m staying with him” and starting to cry.
“I used to play with Hajime together but now, he can’t run or walk,,” and cry even more.

I was thinking (hoping) that our kids are doing ok but this reminds me that they are also hurt deeply. They always cherish all the good memories about Hajime.

After that, Yuki left a letter to Hajime.












“ Dear Hajime.
It’s me your sister. I wanted to say. I’m sad that you can’t play with me and run & speak. I hope you can sleep with me.
Well, good – bye.

Love, Yuki (feel better Hajime) “


Translated by HM

Dec 16, 2011

Christmas carol

Today, we had a lot of visitor. At the morning, two people came for Hajime’s bed bath and then Tammy came.
At the afternoon, social work, nurse and doctor came. Allison and Kim also stop by to drop off our kids.
At the night, High school choir with their teacher and Joan come.
It becomes a long day for Hajime.

Usually a lady name Jamie comes our home for the bed bath… Right now, she is training a colleague so there are two people to have bed bath.
Recently, we start to let them use a regular shampoo instead of a non-rinse shampoo so Hajime seems to feel much better. In addition, his hair got short so it should be much easier to shampoo him.

Tammy finally comes again. She had an asthma attack and staying at home for a while but she looks better today. I was happy to see her again but I was a bit disappointed that she cannot come when we really need help.
Hopefully, we can find an alternative person.

We were hoping that our social worker had any information about the Medi-Cal but she did not have any today.
While our social worker was our home, we heard a huge thunders several times and Hajime was surprising about that. To tell the truth, Hajime don’t like the thunder. I think he was a little intimidated.

The nurse and doctor visit was very productive.
We could able to cover a lot including about feature plan.
We also discussed about recent incident that Hajime could not able to breath.
Doctor was pointing out that there is small possibility that our ventilator may have an issue so they will contact our supplier just in case.
They also agree that it is very dangerous situation so they will have a close eye on it.

At the night, one of a high school teacher with his choir class students came to our home. They sang a wonderful Christmas carol for Hajime.
Hajime was smiling all the time.
















We are so thankful to the choir teacher Mr.Gray and Joan to arrange this Christmas carol concert for Hajime. Thank you so much for a wonderful holiday gift.


Translated by HM

Dec 15, 2011

Third time of Botox injection

Today we took Hajime to the clinic at Sunset to have Botox. We decide to have Botox again because the one he had three months ago getting weaker at this point.

This was the third time to take him out since he has been discharged. Maybe because he is getting used to it, he did not express a hardness much this time,, or maybe just because we used a lift. Anyway, it is a very good thing that he did not have much pain.

Around 1:30pm the van from the city came to pick up us for the 2:30pm doctor’s appointment.












It was been for a while to come back to the neurology department. The office have been remodeled and looked very different but the people work there were same and several people who used to see Hajime during the ALS clinic stopped by to say hi to us.

This time, doctor injected the Botox in four spot. Hajime was very calm. Giving that he was expressing he don’t want to do this till the very last minute, I think he really did a great job.












The city ride driver was waiting for us so we did not have to wait at all and smoothly able to come back home.
We were so thankful to this nice city service provide for us. It makes such a hard trip less stress.
If we could increase such an opportunity to take him out, we could probably get ready more smoothly and easily to take him out.
I always wish if we could have a van for the wheelchair,,,


Translated by HM

Dec 14, 2011

Haircut

Today, finally Hajime got a haircut for the first time in six months.

Kumiko-san who is professional hairdresser come to our house and cut his hair.
She contacted us through our friend Mie-san and asked for any help for our family like a haircut.
During Hajime was still at the hospital, we just asked for Ryo’s haircut but this time fortunately we could ask for Hajime’s haircut as well. She also did for me too!












How do you think? Handsome?
Hajime likes it.

It become too long hair and it was quite hard to wash his hair but now on it should be much easier.
I’m very glad.

Thank you, Kumiko-san!

Translated by HM

Dec 13, 2011

Weakening of his leg’s muscles

It’s been a few days since the incident at the nighttime but I’m still being afraid when the night comes.
Although, Hajime is doing pretty well and that is our relief at least.

We have a helper to take care Hajime. Her name is Tammy.
She is sick for a while recently so right now my husband and me are the only one to take care Hajime. We are doing ok so far but hopefully she will come back soon.

Lately, Hajime is watching MACROSS (ROBOTECH) DVD all day. His grandparents brought it from Japan recently and on top one of our friends gave him another DVD as a gift so he have a couple of DVDs now.
He is watching those DVDs all the time.

It is getting less frequent to play games now. It is mostly because his strength of legs is getting weaker and he has a hard time lifting his foot.
He used to draw up his knees when he plays game but right now he only can do on his right knees.
Because of this weakness, conversations using tobii touch screen getting less too.

ALS really brought the tragedy to all of us.
I pray every single day to stop progressing his disease.


(Translated by HM)

Dec 11, 2011

A calm day

Since the last night happening, I was filled with a feeling of tension.
I was keep watching the number on the ventilator.

Although, Hajime was pretty calm and it might just because he was tired but he was sleeping all morning and at the afternoon, he was enjoying a game as usual.

At the late afternoon, we also did a trach change, which haven’t had for a while. This time we tried the Morphine instead of Ativan based on our doctor suggestion and seem to work better.
His anxiety during his trach change was much better than usual.
We were worrying that infections may caused by not changing a trach so often so we are hoping that this trach change will help reduce and become better conditions of secretion.

I’m still afraid of nighttime.
Maybe I can’t sleep tonight as well,,,


(Translated by HM)

Dec 10, 2011

Scary moment

He was so tired.

Hajime could not sleep last night and also he had a lot of secretion during the daytime so I need to do the suction many time. Even thought, I could not able to suction his secretion well,,, His day was not well.

At the night, Mark brought a Batman DVD to watch with Hajime but he looks tired.

And the late night, we got a big big incident that makes me very scared.

Around 2:30 AM when I notify by beep, his lung was working at minimum.
On the ventilator, there is an indicator call tidal volume that should be around 500ml but at that time he only had for 16 ml. That means he was barely breathing.
His body and face was so cold. I ran to wake up my husband.
While we were checking his ventilator carefully, Hajime wake up and demand for the suction.
After the suction, every value got nominal and he start to breathe normal.
If we could not do the suction on time,,,, it was really scary moment.

After that, I did not sleep at all and checking how Hajime is doing. So far, he is doing ok.

God saved his life. I was so relieved.


(Translated by HM)

Dec 8, 2011

Doctor visit

Today we had a doctor visit for Hajime.
We discussed about an issue of his secretion.

Doctor concerned Hajime’s secretion color and odor so he decided to give a new antibiotics, which inhale through the nebulizer.

We also decide to take a sample of sputum culture so that we know which kind of bacteria is colonized. This sample will help in case Hajime got pneumonia.

For the oral secretions, we decide to try another Botox. We have to find transportation because we need to take Hajime to the neurology department at the Sunset for this treatment.

Hajime actually do not wanted to have Botox but since it seems to be working, we decide to try this third shot again.

If Botox did not work for this time, backup plan is to do a radiation treatment. However there is a rumor that patient who has a trach may not allow to do this treatment so our doctor need to do more research on it.

In case if we could not do the suction through the trach, we have advised to tray tapping on his chest or make a vibration when he exhale his breath.
Doctor was suggesting that we should do this treatment twice a day after a breathing treatment for 5 minutes.

It was kind of lengthy discussion but it was good since we could talk about a care and feature plan deeply.


Translated by HM

Dec 7, 2011

Normal shampoo

Today, Tammy comes for Hajime’s care. Tammy was sick for a while and could not come but finally she gets better and shows up today.

Recently he always fall in to sleep right after his medications at 10am and keep sleeping till noon. Because of that, we decided to change Tammy’s schedule to come at 1pm after Hajime woke up.

This morning my friend Noriko-san also comes to see me and let me have some break. I felt indeed friends are important.

Tammy brought a nice item to wash Hajime’s hair so we tried it out.




















Hajime seem to feels good and his hair also cleaned well. I’m hoping that his head itches also get better.

Because we can’t change his trach or maybe another infection, his secretion color is not so good. He also having a trouble gets rid of his saliva on his tongue. I’m very worrying about his secretion.
All in all, Hajime himself is doing pretty well.


(Translated by HM)

Dec 6, 2011

Church visit

Yesterday, our whole family went to the church for the first time in six months. We wanted to see all of the people who help our family and pray for Hajime.

This time we tried to use a lift to sit Hajime on a wheelchair from a bed. This was much easier for him than last time we took him to his high school.
However, a head supporting gear (headmaster) hurt his neck so he was having a hard time during the service.

The bus picks up us at 10am and we left the church around noon. It was quite a long trip for Hajime but he did a great job.
So many people stop by to say hi. I was so thankful and felt deeply that our church member loved Hajime and our family.




















It was a quite hard morning for Hajime so after he came back to home, he was sleeping pretty well.

But not again, on that afternoon, our house had a power outage all the sudden.
This time it was just me, so I was slightly panicked.

Last time when we had a power outage, my husbands setup everything for the machines and I was supporting Hajime so I was not aware how to setup the machines during the power outage. It turned out that this was a good opportunity to learn about those setup.

My husband instructed me how to do through the phone so I was able to setup the ventilator battery and switch to the O2 tank.

And of course, today we had a power outage again when I was alone.
But yesterday incident help me that I could prepare everything pretty quickly all by myself even my husband could not pick up my phone.

But actually, I was very scared.

Today, Hajime’s grandparents took off to Japan. They come to see Hajime all the way from Japan. I was very pleased to see them. Hajime missed them very much.
I’m already looking forward to see them again.

So from now on, we are back to family of five.
God, thank you so much for giving us such a wonderful week.


Translated by HM

Dec 4, 2011

Finaly it is getting better

It’s been a while since the last blog.
His fever has come down and the pain is easing.
However, he has a back pain now.

On a good note, his grandfather and grandmother came from Japan.
I am so glad that they could come.
We will miss them a lot after they leave next Monday.
Thank you so much for coming!

We got antibiotics from our doctor as Hajime had a fever and his secretion was yellow.

I am concerned about his bed sores on his left elbow as well.

The nurse said apply some lotion and see what happens. We need to keep an aye on it.

Anyway, we had a blackout caused by a strong wind on Wednesday night at 12:30 am.
It is a serious matter for us!
We checked Hajimes's respirator right away then switched to an oxygen tank and ran the respirator on an extra battery.

It was such a late night, I was hesitant to call Alice.
Even though it was late at night, Alice brought in gasoline and oil for a generator that was given to us a little while ago, since we did not have any.
In the morning, Jim bought more gasoline so that we could operate the respirator after the battery ran out.

It was after noon when we had power back on. It was such long hours and unexpected that we were desperate, but we learned a lot.

There are still some areas without power, we hope it will be back to normal soon.


(Translated by Yoko B.)

Nov 30, 2011

Thank you for being patient

Hajime is doing very well.
I am the one who is not feeling well.
It's been a bit tough as I have a fever and body ache.

I am sorry for the delay in updating my blog.
Please be patient a little longer.

My in-laws are coming today from Japan.
I am really looking forward to it.

(Translated by Yoko B.)

Nov 26, 2011

Thanksgiving Day

My PC has stopped working completely.
I need to save at least the data on the hard disc as I don't have any backed up data.

Today is a Thanksgiving day in America.
My husband is off today and we are all here together with Hajime.
It is the happiest thing.
Hajime taught us that happiness like this is right by you.

We received a lot of Thanksgiving food from everyone today.
It was so great.
Thank you so much everybody.

We had a nurse from pallative care yesterday and Hajime was telling that something wrong with his mouth.
We take care of his mouth in the morning and at night, but his mouth is becoming hard to open.
His pillow needs to be adjusted, but is has been difficult to clean his tongue. Looks like an infection on his tongue may be the cause. Hope it will not get any worse as it could be very dangerous for Hajime.

Also, we changed the nutrition volume that Stella instructed us from 375ml X 5 times + 240ml water to 5 cans per day. However, it may be too much of a change and we decided on 6.5 cans a day.
No more feeding at night.
But, his toilet needs at night has not changed.
What is most important is Hajime's well being, so we will adjust accordingly.

(Translated by Yoko B.)

Nov 23, 2011

God with Hajime

The condition of PC has not been very good,
and it has repeated getting crashed again and again for several days.
It hasn't recovered completely yet, but we are letting it run
at the safe mode.

Last Thursday when we visitied high school,
we took some photos together.
We found a very interesting photo among them.
You can see a sunlight there
and the sunlight is shining Hajime.

Alice, Mark's mother told me.
When I see closely, it is clear that the sunlight
is falling on where Hajime is.
It's such a nice photo and it moved me a lot.

"Hajime is with God"
This word still impresses me.

Hajime has been calm all the time.
As for the infection, it seems the medicine is working.
Both the smell and the color seem okay.
Hajime looks somewhat fine.
But these days, he has often had toilet accidents.
I guess he has to use diaper before long.
It must be shocking for an 18-year-old boy,
but my husband and I think it's better for him
because he doesn't have to worry about incontinence.

The muscle hasn't stopped declining,
and it is getting unable to move gradually.
When I change sheets,
I could do it with Hajime's help,
but recently we cannot do it anymore.

From now on, it's up to our stamina.
There are some things I cannot do all by myself,
and in those times,
I feel guilty as a mother.
Though I am his mother, what am I saying?
I have to hang in there more!!


Translated by YT

Nov 18, 2011

Welcomed at High School

A lot has happened on Thursday.

There was an incident this morning.
After giving his morning medicine, Hajime's face turned white.
I noticed while I was applying Vaseline on his lips, he looked light-headed.
I called my husband right away and checked Hajime's blood pressure which was 83/57 no matter how many times we checked. We called the nurse and she asked us to raise his body gradually.
We raised Hajime's body while we prepared for a school bus to his high school.

That’s right. He went to his high school today.
Hajimes friend, Kevyn planned everything.











A city bus was arranged by Joan and came by at 11 am.

It was quite challenging to move Hajime to his wheel chair as he hasn't used it since he came home.
His legs were no longer able to stand. I realized it was so much tougher without him being able to stand..

It took us a while to put Hajime in his wheel chair and onto a bus to go to his school.











At school Hajime's friends were waiting for him.






















I was so moved and brought tears in my eyes.
Hajime is loved by so many people.











We came home around 11:20 am after spending three hours or so at school.
He seemed to have enjoyed very much.

Later his condition got worsened. We had to use tulake many times in addition to cough assist to make him feel better.

After that, we had a Social worker and a nurse from the palliative care team for a long visit.

It was pretty hectic, but such a memorable and wonderful day.

Thank you god.

Nov 16, 2011

Younger brother's birthday

Today, the 15th of November is Hajime's younger brother's birthday!
First thing Hajime did this morning was to type “A Happy Birthday”
to his brother with his tobil.

Celebrating his birthday together as a family was really nice. My husband's birthday was spent at an intensive care and we weren't able to anything to celebrate.











However, Hajime was sad not being able to join us for dinner or to eat the birthday cake with us. It is hard that he can't eat.

We had a helper from Keiser for giving Hajime bed bath. Normally, she does it by herself, but she asked me to stay today. My husband helps out at night, but he was very exhausted as he hardly got any sleep. It is not easy to operate the equipment to clear his secretions every several minutes. I am wondering if we should ask the helper to handle the night time.

Heavy secretions is a serious issue and I am concerned for his condition in the future.


(Translated by Yoko B.)

Nov 14, 2011

In his bed

The kids have been out of school since last Friday. Hajime is happy that he can play games with them and talk to them.

His conditions,

We stopped the stomach medicine as he has been having loose stools lately.
Looks like he has some kind of infection that makes his secretions not looking very good.
He is prescribed an antibiotics to take for the next seven days.

I am a little concerned as he is not very energetic.
I hope to see his smile soon.

We also did our first tulake replacement since he came home from the hospital.
Hajime was not really up to it, as he can see his blood and it is not easy.

After that, Mark came and it made Hajime feel much better.

Sometimes, we have no visitors all day and on some days visitors coming in non-stop.
Hajime is loved by so many people.
I really appreciate them.

Lately, Hajime is very scared of going to sleep at night as he thinks he may never wake up.
It really hurts me every time he tells me what is going on his mind.

I also tried to lie down in Hajime's bed today(reckless right?).
I actually felt so relaxed.
What I noticed was the smell and the noise.
The smell is rather strong as Hajime has an infection.
I realized he is lying down in this smell the whole time.
He does not seem to be bothered by the smell so much, though.
And the sound of the equipment like a breathing device.
It would be nice to rest without all the noise.

It would be wonderful if he could live a normal life.

I am encouraged so much by watching Hajime working very hard every day.


(Translated by Yoko B.)

Nov 9, 2011

In a panic

Hajime's fever finally went down and we had a relaxing day today.

Since I'm taking care of him all alone in the day time,
everything doesn't go smoothly as I wish.
I had many things to do at the same time and got in a kind of panic.

Exchanging sheets, bed bath(wiping his body with towel on the bed),
raising him up and inhalation, chuleck care, feeding,
breezing treatment, and so on...
and giving him medicine...

Compared to night time, there are many things to do in the day time.
I really need vitality!

But it seems Hajime feels most relieved when his mother cares everything.
I think I have to do my best.

Today, my best friend Noriko came to visit us.
As I cannot go out, my friend visits us like this, which is really important.
I was so happy!
Noriko always care about us family,
and also she worries about me and encourages me.
Such a big help from my friends truly support me a lot.
I really appreciate it. Thank you, Noriko!

In the afternoon, Allison and Tailor came to visit Hajime.
Tailor and Hajime were enjoying playing games together.
Until recently, even when his friends came, Hajime couldn't talk with them
and communication was impossible,
but now, he can communicate with his friends with the game;
which means, many children play games for this reason.
Hajime looked so happy.
Allison and Tailor, thank you for coming!

It's really nice to have many visitors.


Translated by Yuki Taterin

Nov 8, 2011

Hajime seemed not well today…

Hajime looked fine in the morning, but was not in a good condition for the rest of the day.

He slept several times during the daytime. He appeared to run the fever which went up to 100.3°F (37.9°C) by evening. Soft stool and he seemed to have the stomach flu… When he feels sick, he became bearish and starts thinking about his disease more seriously… I don’t know how much he blames himself when he can do nothing but just lie down on the bed… He tries to not bother us and not worry us… I pity him very much… He could have stopped blaming himself if Nurse is here…

BTW, the back-up unit of the ventilator does not work well. It seems the model is going to be changed back from “1150” to “950”. The one we have at home is “950”, which is the older model. Even though “1150” is the latest, the internal battery does not work well. Since the back-up unit is quit important and must work properly whenever we use, I really want to make sure that we would get the right and defect-free unit.

Sure thing, the home-care is very hard.


Translated by RM and YM

Nov 6, 2011

Hajime is doing fine!

Because I cannot always stay with PC, it is difficult to update the blog everyday and as much as I hope. It is easier to do that on the mobile phone though...

Even though Hajime’s condition is fine, I am still worried about secretion getting discolored (to yellow) and giving stench.

On Thursday morning, Kaiser sent the doctor and the nurse to check him up. Due to a large amount of secretion, they recommended to use the patch, which is the same one we previously used. We decided to make a try and put it not only behind the ear but also in the upper body.

Around 3pm, the social worker came and helped us with the Medi-Cal application/ paper work.

We were lucky and passed the state-program (In-Home Operation). We hope to go through the Medi-Cal application too. I went to the post office and mailed on Saturday.

Allison (from the church) and Nicole came to see us with the “Welcome Home!” poster. Although it is too big to put on the wall where Hajime can see, he was very pleased.
I thank you all very much!

Then, Steve brought a picture and gave an explanation. Next day, on Friday, Mark came to see Hajime. Hajime is very pleased to see many friends almost everyday.

I would like to see his friends keep visiting us as seeing friends becomes the Hajime’s energy source and encourages him a lot.


Translated by RM and YM

Nov 3, 2011

How precious friends are

Today, Tammy came to see us for assistance.

We can rely on her very much as she gets used to the things around here, such as giving medicine and helping with aspiration.

Hajime looked tired somewhat today, as he couldn’t sleep well last night. Since he had been in hospital life for 5 months, it may take some time to accommodate himself to living at home. Nevertheless, he became energized as his younger brother, Ryo, would come back home at 3pm and his friends would come to play the game together this evening. I did realize that friends were so precious.

We received the air mattress, arranged by the nurse in Palliative-Care. I wondered how to set it up in the Hajime’s bed but would rather wait for the nurse comes back tomorrow.

I am going to ask the doctor & the nurse various things when they visit us tomorrow.


Translated by RM and YM

Nov 2, 2011

The morning we spend together that we long waited

Yesterday, time flew like an arrow.
I'm so happy to be able to see Hajime immediatelyラブラブ

Besides, it's really important you don't have to go
to Orange County taking a whole hour,
especially for me, who has other school-children.
 I don't have to do my children's assignment at the hospital.
His brother and sister also can see Hajime's face
as soon as they are back from school.

Hajime stays home; it means,
we are really close to each other in our daily life.

BTW, yesterday, November first, was so busy as well!!
Nurse came just before 10 o'clock in the morning,
and she helped me to give medicine to him,
and she gave a hand to many things.

Hajime is not so good, maybe because he's tired
from this and that just after he got out of hospital.
I'm worried about him if he is okay,
but it makes me feel better
to find him sleeping in the daytime.
To see him sleeping with a face like an angel,
I was kind of relieved.

RT came again today to give an explanation.
He was supposed to come from 4 to 4:30,
but he showed up after 5 eventually.
And his speech was really long.
Not only Hajime but all of us got exhausted.

It's really tough to give a care for 24 hours a day, 7 days a week.
I'm feeling it from the bottom of the heart.
Not only taking care of my children and housework,
my husband's work and many other things,
but I have to care Hajime all by myself.
I'm really anxious if I can really do this.

But Hajime said to me, "I'm sorry".
He thinks it's his fault to give a big burden to me.
He looked so ssad.
We are always trying to care him without showing we're tired,
but Hajime knows many things.
Nothing is sadder than this.
I wish I can express those feeling.

I'm worried about Hajime's heart.


Translated by YT

The long-awaited day, Discharge from hospital

Finally, I got a time to sit at my desk and update the blog on PC.

Although I wanted to update the diary/ the blog of the day Hajime was discharged from hospital right away, I had no time at all and made myself really busy by working up until 2am. Now I got relieved as my husband does in turns.

Well, let me get started by telling you about the day Hajime left hospital.

On 31st, I went ahead to the hospital right after I dropped off my kids at the school in the morning. By the time I arrived, Hajime already took a shower and cleaned up to make him ready for leave.

Then, he said good-bye to nurses and therapists, which is the sad thing to do. Among others, leaving from Pamela is very sad. She came to see Hajime in the morning, even though she worked all thought the night before. We are so happy to see her. She always took care of Hajime well, and also worries about us, the family, as well. I will definitely keep in touch with her from now on too.

Also, it was sad to part from Diana, Caseworker, who helped us all the time. She was very professional and we really respect her for the way she worked. She is also the one who always looked after us and worried about. We would like to stay in touch with her as well.

We are grateful to meet such nice people.

At the time Hajime was hospitalized, the things were pretty mess and hard to manage…
We came into conflict with Nurses and wondered what to do when Hajime was in low spirits…
However, we can now think it was good to come here. We learned a lot and experienced.
We do appreciate for people at the hospital and all the support provided to our family.

It was after 11:00am that we left the hospital. Both Hajime and I were transported by the ambulance but I had to be in the assistant driver’s seat and couldn’t stay with Hajime.  

We arrived home right after 12:00pm! Finally, we came back home together!

I couldn’t stop shedding tears… I was so happy as I waited very anxiously for this day.

Around 1:00pm, Nurse, Tammy, visited us. She is the one who is going to take care of us from now, even for a short while. Stu helped us as well. After then, firemen came to see us. It is important to know each other for just in case something happens to Hajime. They all looked “cool” (to me)!

Then, RT and friends came by and it was the busy night.

Well, it was a busy day of discharge from hospital.


Translated by RM and YM

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

Postponed

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

Coughassist

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
this.

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
wonder.

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

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...
pity...


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