Jul 29, 2012

IV starts again

On Thursday, Hajime got a favor around 100.7 degree.
Tylenols helped and his favor become better but still continued his running nose and also need suction several times.
We did not decide to give antibiotics right away because we worried about the resistance on antibiotics. However, his doctor concern his favor and decides to start antibiotics this time.

It started last night and will continue for two weeks.
I just hope that his greenish secretion and running nose will become better.

(translated by HM)

Summer Musical

For four days from July 25 to 28,  the church put on a musical and Hajime's younger brother Ryo was in it.

The summer musical is an annual tradition at our church, the First United Church of Pasadena. Many people participate in it. There are rehearsals every day and they really go all out.

Hajime used to be in this musical every year too.
He started to participate in the musicals as soon as he joined the youth group.  He really enjoyed the daily rehearsals and worked very hard at the singing and dancing.

Hajime was crying as he watched the video of Ryo performing in the musical.  I think he must have mixed feelings about it.
Every year, the musicals gave him a reason to live!   I think he will never forget the excitement of working with everyone on one project and seeing it through to the end.

But I also think that no one will forget what Hajime contributed to the musical every year, and that will remain in everyone's hearts.

One day you'll be able to be in a musical like this again!
Hang in there, Hajime!

(translated by MS)

Jul 27, 2012

His Eyelids Won't Close

Recently, when I'm having a conversation with Hajime, there are many times that he doesn't respond. Until now, I had wondered why he didn't answer me.
Yesterday, I finally asked him, "Why don't you answer me?"

As it turns out, it seems that it has gotten very difficult for him to close his eyelids on his own.
I immediately thought that the muscles to close his eyelids must have gotten weaker.
When I told him to try to close his eyelids, he could not close them or respond in any way.
Even when he blinks, his eyelids just close partway.
Maybe that is why he always looks teary-eyed.

I had heard that the eyeball muscles would not be affected, but I think his eyeball muscles are also getting weaker.
Before, Hajime would look up to indicate "no", but even that was hard for him to do.
He seemed very frustrated at not being able to say yes or no.  He was crying but the tears would flow with his eyes open.

It made me realize again that the illness is progressing.
It was a shock.

Please take a look at this picture.

You can see how his leg muscles have deteriorated.

When you compare both legs, you can easily see how his left leg muscles are deteriorating.

When muscles atrophy, they become thin like this.

I truly hope that a new drug will be available soon.
He will get better!  For sure!

(translated by MS)

Jul 24, 2012

Beautiful voice

Sunday afternoon, Mark and Alice brought their friend Katie from their church. She sung one a Hajime’s favorite song of Titanic “My heart will go on” for Hajime.

She has a beautiful voice and heal us. We could tell from Hajime’s face that he is feeling something.

Music is wonderful. The language or nationality doesn’t really matter and able to gives their heart. Maybe it might be most important thing for my son..

Thank you so much Alice and Mark for giving us a wonderful experience.

( translted by HM )

Jul 22, 2012

Conveying His Thoughts

The device for Hajime arrived from Dr. Hirai's colleague.
The device uses Hajime's eyes.  He puts on something like glasses and when he looks at the light on the device, it will make a sound.

We put them on Hajime right away, and we tried them out.

If you look at this picture, you will see the red dot on the right. When he looks at this, it will make a sound.

I thought the frame might bother him, but he said it doesn't, so that's good.

It would help if the buzzer goes on when Hajime wants something from us.  We are all hoping for so much.  If everything had been left to us, we would have been having a hard time and we would have been unable to make any progress, but this is all thanks to Dr. Hirai.  Thank you, Dr. Hirai!

My husband is thinking if he connects this device to the other communication device called tobii, maybe he could change it to "scan mode" and then be able to input letters. 

This device was rented before, but a new, improved model arrived so I think we can use it in different ways.  I understand that you can use it for Facebook and YouTube...

This will open up so many possibilities for Hajime!

It's important not to give up and to keep moving forward.

(translated by MS)

Jul 20, 2012

Do We Worry Too Much?

His nose has stopped running since yesterday.
But I'm concerned because he's had a low grade fever the past few days but only in the mornings.
I think some infection must be causing it.

...but, as if to dispel any worries,  Mary told us at her last visit, "Oh, that's no problem! Just let me know if his fever goes above 101."

Regarding the increased secretion around his trache, she said, "Be diligent about changing his gauze and always keep the area dry."

When I told her that the top number of his blood pressure was a little low, she said, "That's totally fine."

Well, if Mary says it's OK, then it must be OK.  We tend to overreact, so I think we make a big deal out of everything.  We will do as Mary says because we trust her.

The same girls came to visit today.  They also brought some beautiful flowers.
We took pictures with the flowers!

Lia, Helen, Catherine, thank you so much for everything!

(translated by MS)

Jul 17, 2012

Runny nose, saliva, secretion

There has been an increasing amount of secretion that often soiled his pillow.

In addition, his runny nose is turned green. It had to vacuumed out and also the excessive saliva and the secretion around the tulake need to be cleaned out. It has been like this for the last two days.

Hajime must be the one who is suffering the most not being able to tell us. It has been challenging to prevent it from happening even though I check frequently.

When he was in a hospital, there was a catheter attached to his tulake and it was taped to his chest which worked pretty well. We may be better to do that way again.

I wonder that other ALS patients are coping with this situation?

It is important to take care of Hajime’s saliva as he seems to have more than others.

I know that it is important to communicate with other ALS patients, but not being able to do so yet...

(translated by Yoko)

Jul 14, 2012


Hajime has had a runny nose with green secretion since the beginning of this week.  It's been so heavy that if we don't suction it, it almost overflows.
And there is quite a bit of secretion around his trache.  It is light green in color and it does not smell good, either.
The other day, I was worried because he had a little fever and he wasn't feeling too well, but his fever is down today and he is back to normal.

It was Mary's day to visit yesterday, but she is on vacation, so a different nurse came to check on Hajime.

She was concerned about his runny nose and fever, so she contacted the doctor and was told to give Hajime antibiotics.
She is not Hajime's regular nurse, and the doctor also just changed, so since they both do not know Hajime's situation very well, we decided that we should wait and talk to Mary before we do anything.

I hope that this infection doesn't turn into something more serious...

(translated by MS)

Jul 12, 2012

Thank You, Kumiko!

Hajime got a haircut yesterday.
Just like the last time, Kumiko came and gave him a nice haircut.

She comes all the way from West LA to our house.  She asks if there is anything she can do for Hajime and our family and she is always happy to cut our hair.  We really appreciate it!

I remembered to take a picture this time.  Kumiko, thank you always!

Oh, and by the way, I had my hair cut yesterday too.
I had been losing quite a bit of hair recently due to all the stress, so I went from long hair to a short cut. 
I feel refreshed and ready to go!

(translated by MS)

Jul 10, 2012

A Visit from the Doctor from Japan

On Sunday, Dr. Hirai, who is an ALS specialist, and his wife came to visit again.
He also brought his nephew and niece, and we all had a fun time together.

His nephew is 18 years old and in the same grade as Hajime, so he will be going off to college, but he said he would correspond with Hajime by letter and email.
His niece is also very sweet.  They are both Christians. 
I thank God that we were able to meet them and Dr. and Mrs. Hirai.

Now, my questions for Dr. Hirai!

I asked him about Hajime's recent stomach situation and he said that ALS may indirectly have something to do with it, but it is not a direct result of ALS.  Therefore, his intestinal function would not be getting weaker because of ALS.  I was relieved to hear that.

However, it does seem that his eye muscles are getting weaker as evidenced by his eyeballs rolling upward with the whites showing when he moves them.  He thinks that the Hajime's eyes may have been abnormal from before.
When we move our fingers and have Hajime try to follow with his eyes, they move from left to right but then the black part of his eyes move upward. That's why he can't use "eye gaze" very well.

Dr. Hirai has been thinking about different ways for Hajime to connect with the outside world, and he said that he would look into it even after he returns to Japan.  He says that there is a way to figure out what Hajime is trying to say by having him wear something like glasses with a camera attached to them and watching him blink.  If we could use a computer that would allow him to communicate with everyone, that would be great.

We are so blessed to have met Dr. Hirai, but unfortunately for us, he has to go back to Japan at the end of September. 
But he says he can keep in contact with us by email, so I feel reassured.

Dr. Hirai, best wishes to you in Japan!

(Translated by MS)

Jul 8, 2012

Name on the Board

On the Fourth of July, Hajime's name appeared on the board at the Rose Bowl.

It was only for about three seconds, but Marilynne had paid and arranged to have this message put up on the board like this. We are so grateful to her for always supporting Hajime.

There have still been several times when the amount of food left in his stomach is over 200 ml, so he can't have all of his 4 cans of nutrition per day. We are supposed to watch and see for awhile, but I pray that he will go back to normal soon.  It looks like he has a bowel movement every other day. The new medication is very strong, so it's been hard to adjust, but we will just wait and see how he does with the current amount of feeding.

Ashley came to visit on Thursday, the 5th.  She came to say goodbye because she was leaving LA the following day.  
(I regret that I forgot to take goodbye pictures with her).
She had come to visit Hajime several times when he was in the hospital and then several more times after he came home. She would always read the Bible to him.  We deeply appreciate her kindness.
I hope that as she goes on with her life, Hajime's fight for life will be a source of encouragement for her too.

Ashley, thank you so much!

(Translated by MS)

Jul 4, 2012

It's Nice to Be Young...

Hajime's school friends came to visit him for the first time in a while.
We are really grateful to them for thinking of Hajime , even after their graduation.

I think they talked a lot about God.
And they read the Bible to him...
The energy of young people is wonderful!
I feel like he got a lot of energy from them.
Happy faces are the best!!
I think they are coming again next week, so we are looking forward to that.

It looks like the infection around Hajime's G-tube has cleared up very nicely, so I am relieved.
They also changed his feeding limit from over 100 to over 200.  (Before, they used to stop his feeding when he has a residual in his stomach over 100ml, but they've changed that to over 200ml).  Now we're able to do his feeding without taking as many breaks.

Things are being resolved one by one, so I am very relieved.

But I am still worried because the secretion around his trache area is still green.
I will continue to keep an eye on it so that it does not become a serious problem.

(translated by MS)

Jul 2, 2012

Wonderful pastors

On Friday, Rev. Sasaki, Rev. Fuchino and Syoko came to our house to pray for Hajime. They come to pray Hajime several times already.

They always pray so nicely and heal our sprite. Every time they pray, I could feel God closely. Miracle will happen, I can tell myself to believe.
Thanks unto God for his grace.

This time they brought a keyboard and sang a song for Hajime. Their voices are like angles. The music they sang was the music Hajime was listening. Hajime was concentrating to the music. He liked it very much.

It will be nice if they could come more often but they are busy so I thought I should sing for Hajime. I should get the lyric from them.
I’m a bit nervous because last times I’ve sing a song for my son, as Mother was probably when he was baby.

Thank you so much to the prayer and music!

(translated by HM)