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


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


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.)