Lately, the tremors in his right hand are starting to become very worry some.
We went to his counseling session at Kaiser on Sunset today. We took his Tobii but it stopped working mid- session, so they had a change of plan and used a pen and paper instead.
They let me see that note afterwards, and I was very surprised at the letters and words that have been written. They were writings that with one look, I was able to tell that his hand had tremors.
Currently at school, other students take notes for him so I never really had the chance to see his writings recently, but today by seeing his writing, I was able to tell how much his disease had progressed.
I took a video of his hand tremors, so I’ve uploaded it.
Translated by Christine Shirota (American English)
My wish was that, "As we hold onto hope for a day to call an important tomorrow, the remaining time that we have together shall be peaceful as can be"
Apr 29, 2011
Youth with a Voice
Youth with a Voice, generated at the high school.
They had their first meeting today.
Even though this club had just invited students in the assembly at the start of the week, they already had many student participants. The classroom was full! Hajime was surprised too.
They were all people that knew Hajime, but regardless I am very grateful that many people that support Hajime came.
What gave me the most joy was that he spoke to me about this with a beautiful smile. It must be because of Hajime’s personal virtue that people gather for him.
Translated by Christine Shirota (American English)
They had their first meeting today.
Even though this club had just invited students in the assembly at the start of the week, they already had many student participants. The classroom was full! Hajime was surprised too.
They were all people that knew Hajime, but regardless I am very grateful that many people that support Hajime came.
What gave me the most joy was that he spoke to me about this with a beautiful smile. It must be because of Hajime’s personal virtue that people gather for him.
Translated by Christine Shirota (American English)
Apr 28, 2011
Frustrations from Not Being Able to Communicate Immediately
This morning Hajime stayed inside his futon, not even trying to go take the examination at school. Hajime has been telling us, “I don’t have to take the examination today.”
Well, what happened was, last night we were asking Hajime about that but we couldn’t finish our conversation.
To Hajime who was still trying to go back to sleep, my husband said with a stern voice, “Just because you don’t have to take the test doesn’t mean you can sleep on a school day.” That’s what he said.
Hajime can’t speak, but he was trying really hard and was saying, “Yes!”
I couldn't understand what was going on so I asked Hajime. “Why don’t you have to take the test? But just because you’re not taking it, it’s not good to skip school.” That’s what I said.
Hajime was trying to tell us, but because of how hectic it is in the morning, we were asking Hajime with a rather strong aggressive tone of voice.
But Hajime was losing to the vexing feeling of not being able to express in words. He was holding his head and crying.
And I thought…., “Oh, what have I said. Hajime can’t speak so he was trying to tell me using text, why couldn’t I understand that, calm down and listen to him.”
The frustration from wanting to speak but can’t. I can’t even imagine how hard it must be. The device that’s necessary to communicate is even hard to use because of tremors in his right hand. Today was a day that I once again reconfirmed the progression of the disease from seeing this kind of reality.
Translated by Christine Shirota (American English)
Well, what happened was, last night we were asking Hajime about that but we couldn’t finish our conversation.
To Hajime who was still trying to go back to sleep, my husband said with a stern voice, “Just because you don’t have to take the test doesn’t mean you can sleep on a school day.” That’s what he said.
Hajime can’t speak, but he was trying really hard and was saying, “Yes!”
I couldn't understand what was going on so I asked Hajime. “Why don’t you have to take the test? But just because you’re not taking it, it’s not good to skip school.” That’s what I said.
Hajime was trying to tell us, but because of how hectic it is in the morning, we were asking Hajime with a rather strong aggressive tone of voice.
But Hajime was losing to the vexing feeling of not being able to express in words. He was holding his head and crying.
And I thought…., “Oh, what have I said. Hajime can’t speak so he was trying to tell me using text, why couldn’t I understand that, calm down and listen to him.”
The frustration from wanting to speak but can’t. I can’t even imagine how hard it must be. The device that’s necessary to communicate is even hard to use because of tremors in his right hand. Today was a day that I once again reconfirmed the progression of the disease from seeing this kind of reality.
Translated by Christine Shirota (American English)
Apr 27, 2011
Tiger Newspaper
The April Edition of the high school newspaper published an article about Hajime.
There was a great response after the assembly on Monday and Hajime had many Facebook friend requests. And, many friends came over to him during lunch time. Hajime was very happy about that and he told me with one of his best smiles.
Our neighbor from our apartment found out about Hajime’s disease through the assembly and he told us, “I want to help, let me know anytime!”
I think it takes a lot of courage to announce about one’s self in front of the whole school. Hajime deserves respect for doing just that.
You did great, Hajime!
Good job!
Translated by Christine Shirota (American English)
There was a great response after the assembly on Monday and Hajime had many Facebook friend requests. And, many friends came over to him during lunch time. Hajime was very happy about that and he told me with one of his best smiles.
Our neighbor from our apartment found out about Hajime’s disease through the assembly and he told us, “I want to help, let me know anytime!”
I think it takes a lot of courage to announce about one’s self in front of the whole school. Hajime deserves respect for doing just that.
You did great, Hajime!
Good job!
Translated by Christine Shirota (American English)
Apr 26, 2011
Hallelujah
Today during assembly, at the high school that Hajime goes to, there was some time to share and let everybody know about Hajime.
We had tried several times before to have this sort of thing, but every time the principal had to cancel it and it didn’t happen.
Hajime wanted to speak in front of the whole school using a speaking device. But the principal strongly insisted on just showing the video… Now that I think about it, it must’ve been difficult to display the way Hajime is; specifically, the way he’s not able to speak.
So it was decided that Hajime will not be using his speaking device, and after the video, Hajime will promote the newly founded club alongside the club’s members.
They ran Hajime’s movie.
With the music of Hallelujah
My tears would not stop watching this video.
The friends that came with me all had tears welling up.
It was a really great movie.
I think I can show the video here after editing some time.
When the principal explained about Hajime, there was a response, “What? Hajime?”
I thought, “Hajime is loved by everybody.” After the assembly, I heard that many people came up to say, “Hi, Hajime!” I am truly grateful.
At the end, when Hajime spoke to the principal, the principal was crying. The principal hugged him and told Hajime that Hajime has her support.
I am glad that we had this kind of opportunity at this time. It was a very memorable moment.
Translated by Christine Shirota (American English)
We had tried several times before to have this sort of thing, but every time the principal had to cancel it and it didn’t happen.
Hajime wanted to speak in front of the whole school using a speaking device. But the principal strongly insisted on just showing the video… Now that I think about it, it must’ve been difficult to display the way Hajime is; specifically, the way he’s not able to speak.
So it was decided that Hajime will not be using his speaking device, and after the video, Hajime will promote the newly founded club alongside the club’s members.
They ran Hajime’s movie.
With the music of Hallelujah
My tears would not stop watching this video.
The friends that came with me all had tears welling up.
It was a really great movie.
I think I can show the video here after editing some time.
When the principal explained about Hajime, there was a response, “What? Hajime?”
I thought, “Hajime is loved by everybody.” After the assembly, I heard that many people came up to say, “Hi, Hajime!” I am truly grateful.
At the end, when Hajime spoke to the principal, the principal was crying. The principal hugged him and told Hajime that Hajime has her support.
I am glad that we had this kind of opportunity at this time. It was a very memorable moment.
Translated by Christine Shirota (American English)
Apr 25, 2011
Easter Sunday
Today is Easter.
In the morning, Hajime joined the choir at the church service. Even though he can’t speak anymore, it’s important to join and just be there. He had on a very nice expression as he sang.
After we got home, we had our annual tradition of egg hunting at our home. The kids were very excited and have been waiting for this.
Hajime had a head start before everybody. I held the bag to hold the eggs and Hajime was looking really hard. His smile that he had at that moment was very impressionable.
I felt glad that he was able to get as many eggs as the others. It would be sad to see Hajime being the only one with a few eggs.
For some reason he had his eye closed, but picture time!
When I think about that this egg hunt maybe the last egg hunt, it is really difficult for me.
Translated by Christine Shirota (American English)
In the morning, Hajime joined the choir at the church service. Even though he can’t speak anymore, it’s important to join and just be there. He had on a very nice expression as he sang.
After we got home, we had our annual tradition of egg hunting at our home. The kids were very excited and have been waiting for this.
Hajime had a head start before everybody. I held the bag to hold the eggs and Hajime was looking really hard. His smile that he had at that moment was very impressionable.
I felt glad that he was able to get as many eggs as the others. It would be sad to see Hajime being the only one with a few eggs.
For some reason he had his eye closed, but picture time!
When I think about that this egg hunt maybe the last egg hunt, it is really difficult for me.
Translated by Christine Shirota (American English)
Apr 24, 2011
My Buddies
These days, I couldn’t keep up with the progression of Hajime’s disease, and everyday was filled with tears.
That’s why I had an urgent need for a moment with my buddies. I couldn’t bring myself to say “Help!”
But I was able to say “I want you to help me” to my buddies that I can trust.
Those buddies called me right away when I had problems. It made me so happy!
Today I was able to spend some time with those buddies, Yukko, Hiro and Yoshie. I was able to feel myself getting healed.
There was an incident of Hajime choking on some chips, but Hajime seemed very happy to be able to come out with us.
And also, all of our kids got along really well, so I think it was good for his brother and sister because they had a fun time as well.
Now I can work hard again from tomorrow!
I hope I can give Hajime lots of love!
Thanks everyone!
Translated by Christine Shirota (American English)
That’s why I had an urgent need for a moment with my buddies. I couldn’t bring myself to say “Help!”
But I was able to say “I want you to help me” to my buddies that I can trust.
Those buddies called me right away when I had problems. It made me so happy!
Today I was able to spend some time with those buddies, Yukko, Hiro and Yoshie. I was able to feel myself getting healed.
There was an incident of Hajime choking on some chips, but Hajime seemed very happy to be able to come out with us.
And also, all of our kids got along really well, so I think it was good for his brother and sister because they had a fun time as well.
Now I can work hard again from tomorrow!
I hope I can give Hajime lots of love!
Thanks everyone!
Translated by Christine Shirota (American English)
Interviewed by Rafu Shimpo
Today we met and talked about various matters with a writer, Ms. Nakamura from Rafu Shimpo.
Ms.Nakamura listened intently to us and even though it took a long time, she had set her time aside for us and we were very grateful.
We told her about before Hajime’s disease, during the onset, and where we are currently, in those order. Talking about it gave me nostalgic feelings and at the same time felt vexed about all the things that he was able to do.
That reconfirmed the fact that, as a family, we are helped by Hajime, and have been given courage and energy from Hajime…
I thought, really, it wouldn’t be surprising if he gets upset and depressed and throws all the anger at us, his family. But he hasn’t done anything even close to that and he always comes to us in smiles.
Even though he’s the one with the disease and having a tough time…
We as a family should have a more positive outlook and treasure the happiness in the future… is what I’m thinking.
Thank you, Ms. Nakamura, for today.
Translated by Christine Shirota (American English)
Ms.Nakamura listened intently to us and even though it took a long time, she had set her time aside for us and we were very grateful.
We told her about before Hajime’s disease, during the onset, and where we are currently, in those order. Talking about it gave me nostalgic feelings and at the same time felt vexed about all the things that he was able to do.
That reconfirmed the fact that, as a family, we are helped by Hajime, and have been given courage and energy from Hajime…
I thought, really, it wouldn’t be surprising if he gets upset and depressed and throws all the anger at us, his family. But he hasn’t done anything even close to that and he always comes to us in smiles.
Even though he’s the one with the disease and having a tough time…
We as a family should have a more positive outlook and treasure the happiness in the future… is what I’m thinking.
Thank you, Ms. Nakamura, for today.
Translated by Christine Shirota (American English)
Apr 23, 2011
The Last time "Manpuku"
Let me talk about the day when we went to
a Yakiniku(Japanese style barbeque) restaurant together
before Hajime gets totally unable to eat.
It's a pity that Hajime cannot eat right now.
It's quite a long time ago that he ate his favorite food, Yakiniku.
He had his last Yakiniku dinner
when he went to a Yakiniku restaurant called "Manpuku" in Costa Mesa,
invited by our friends Akira and Atsuko.
The two friends helped us a lot at that time.
Thank you for everything.
I was really glad that he could eat his favorite food
to his heart's content.
The restaurant "Manpuku" in Costa Mesa
is one of the best restaurants where you can have a happy time.
I was so happy to take Hajime to such a nice restaurant.
Akira and Atsuko, thank you so much.
Translated by Yuki Taterin
a Yakiniku(Japanese style barbeque) restaurant together
before Hajime gets totally unable to eat.
It's a pity that Hajime cannot eat right now.
It's quite a long time ago that he ate his favorite food, Yakiniku.
He had his last Yakiniku dinner
when he went to a Yakiniku restaurant called "Manpuku" in Costa Mesa,
invited by our friends Akira and Atsuko.
The two friends helped us a lot at that time.
Thank you for everything.
I was really glad that he could eat his favorite food
to his heart's content.
The restaurant "Manpuku" in Costa Mesa
is one of the best restaurants where you can have a happy time.
I was so happy to take Hajime to such a nice restaurant.
Akira and Atsuko, thank you so much.
Translated by Yuki Taterin
Apr 22, 2011
April 22nd
Today's Hajime's picture.
It's so hard to understand what he's trying to say.
But his nice smile is fine as usual!
Translated by Yuki Taterin
It's so hard to understand what he's trying to say.
But his nice smile is fine as usual!
Translated by Yuki Taterin
Apr 21, 2011
Photo Sticker
There is the photo sticker Hajime likes the most.
Here is it.
This is the one he took in Little Tokyo, Downtown Los Angeles, when he went along with the Church youth members, and he prizes very much. Hajime couldn’t make any friends while he was in Japan… maybe because of his LD. He wished he could have good friends someday. He is always in a graceful manner and very friendly, so he was soon making friends when he moved to USA. However, he might not know well how to get along with friends, and might rather long for. He sometimes even envied kids who took photo stickers.
I am very happy that Hajime did join the youth-group at the church. He keeps this photo sticker by putting a tape on it, even when peeled and faded, and it tells me how important this is for him. So, he must have a very good time with his friends on this photo. I would like to keep this mobile with the photo sticker on as long as possible.
(translated by YM & RM)
Here is it.
This is the one he took in Little Tokyo, Downtown Los Angeles, when he went along with the Church youth members, and he prizes very much. Hajime couldn’t make any friends while he was in Japan… maybe because of his LD. He wished he could have good friends someday. He is always in a graceful manner and very friendly, so he was soon making friends when he moved to USA. However, he might not know well how to get along with friends, and might rather long for. He sometimes even envied kids who took photo stickers.
I am very happy that Hajime did join the youth-group at the church. He keeps this photo sticker by putting a tape on it, even when peeled and faded, and it tells me how important this is for him. So, he must have a very good time with his friends on this photo. I would like to keep this mobile with the photo sticker on as long as possible.
(translated by YM & RM)
Mom, what's for dinner tonight?
Though Hajime can not eat food at all, he asks me every day,
"Mom, what's for dinner tonight?"
Even though he cannot eat, he's curious about it every day.
And・・・・・・right now as I'm writing this, big tears came out of my eyes.
I couldn't stop feeling so sad.
Hajime must be imagining how the dinner tastes in his mind.
No matter how much he wants to eat, he knows he can't eat, so he has to hold back.
・・・・・・・・・・・・・・・・・・・・I can't.
I cant's stop my tears.
Translated by Yuki Taterin
"Mom, what's for dinner tonight?"
Even though he cannot eat, he's curious about it every day.
And・・・・・・right now as I'm writing this, big tears came out of my eyes.
I couldn't stop feeling so sad.
Hajime must be imagining how the dinner tastes in his mind.
No matter how much he wants to eat, he knows he can't eat, so he has to hold back.
・・・・・・・・・・・・・・・・・・・・I can't.
I cant's stop my tears.
Translated by Yuki Taterin
Apr 20, 2011
Suction Machine
We've got a suction machine today
which the nurse recommended us when she came to our house last week.
As Hajime often chokes on his too much saliva, she had advised us to use it. The machine makes a huge sound, but it's very similar to the one which dentists use to absorb saliva during an operation. We gave a try to remove saliva in Hajime's mouth.
Hajime could use the machine smoothly (actually it was my husband who did it) without any hesitation nor vomiting. I'm going to use it to remove his saliva in the day time when he's at home, or before he goes to bed so that he can sleep easily.
The make told us never to lose it because the equipment is a rental one. (It costs hundreds of dollars!!) It's not so small as to lose. It's quite big and heavy.
Translated by Yuki Taterin
which the nurse recommended us when she came to our house last week.
As Hajime often chokes on his too much saliva, she had advised us to use it. The machine makes a huge sound, but it's very similar to the one which dentists use to absorb saliva during an operation. We gave a try to remove saliva in Hajime's mouth.
Hajime could use the machine smoothly (actually it was my husband who did it) without any hesitation nor vomiting. I'm going to use it to remove his saliva in the day time when he's at home, or before he goes to bed so that he can sleep easily.
The make told us never to lose it because the equipment is a rental one. (It costs hundreds of dollars!!) It's not so small as to lose. It's quite big and heavy.
Translated by Yuki Taterin
Apr 19, 2011
Support Team Meeting a church
Today we had a support meeting which is held once a month at church.
From today, the youth group at our church also have joined us and we have a total of 11 members.
It is a big meeting.
First, his classmates shared with us their concerns, and we discussed what Hajime's life is like at school.
Next Monday, at high school morning session, Hajime is supposed to talk about his disease in front of everybody. I've heard that the school principal is saying that it's better not to let him speak. But many members in the support group have an opinion that Hajime, himself should talk in front of 500 people.
And everybody says that is because they are sure ・・・・・・・・・・that Hajime can do it.
It's going to be a speech using tobii. I wish the best of luck for him.
Also, we hav decided to make a T-shirt together.
We showed the sample T-shirt, which we already made
with Mr.Kawaguchi's illustration printed on.
Everybody said, "It's so nice!" "Cool!"
"We can tell Hajime's nice face!!" and it seemed that they liked it a lot.
The quality of the sample T-shirt was not that good, so I am going to make another one again.
But I hope we can make the best T-shirt eventually. I really thank Kawaguchi.
When we wear the T-shirts together, let me send a photo of it.
Thank you so much for such a nice T-shirt.
As for other topic, right now, each member of the church boy-scouts are doing a fund-raiser, but they are not going to do it separately any more, instead they will donate the raised funds together to "Hajime Fund".I really appreciate they work.
Also, I've got an offer to let Hajime appear in the TV show called "Today's show".
We said "Yes" immediately, and have started this project.
We are going to meet with the writers from Rafu Shinpo.
They are going to write about Hajime for their article.
I hope the support for Hajime will spread out to more and more people.
We talked about the van to carry a wheelchair.
When we went to Amilities Expo,
I've learned that a wheelchair is really expensive.
The ordinary wheelchair is 23,000 dollars,
and it costs 30,000 dollars to arrange it.
So at least one needs to pay 50,000 dollars.
Most people cannot afford to get it.
As USA is such a car-society,
I'm really concerned about our future life.
Anyway, I'm going to do my best for the fund-raising.
Just like this, we talked a lot in th meeting.
I got tired from plenty of updating.
Translated by Yuki Taterin
From today, the youth group at our church also have joined us and we have a total of 11 members.
It is a big meeting.
First, his classmates shared with us their concerns, and we discussed what Hajime's life is like at school.
Next Monday, at high school morning session, Hajime is supposed to talk about his disease in front of everybody. I've heard that the school principal is saying that it's better not to let him speak. But many members in the support group have an opinion that Hajime, himself should talk in front of 500 people.
And everybody says that is because they are sure ・・・・・・・・・・that Hajime can do it.
It's going to be a speech using tobii. I wish the best of luck for him.
Also, we hav decided to make a T-shirt together.
We showed the sample T-shirt, which we already made
with Mr.Kawaguchi's illustration printed on.
Everybody said, "It's so nice!" "Cool!"
"We can tell Hajime's nice face!!" and it seemed that they liked it a lot.
The quality of the sample T-shirt was not that good, so I am going to make another one again.
But I hope we can make the best T-shirt eventually. I really thank Kawaguchi.
When we wear the T-shirts together, let me send a photo of it.
Thank you so much for such a nice T-shirt.
As for other topic, right now, each member of the church boy-scouts are doing a fund-raiser, but they are not going to do it separately any more, instead they will donate the raised funds together to "Hajime Fund".I really appreciate they work.
Also, I've got an offer to let Hajime appear in the TV show called "Today's show".
We said "Yes" immediately, and have started this project.
We are going to meet with the writers from Rafu Shinpo.
They are going to write about Hajime for their article.
I hope the support for Hajime will spread out to more and more people.
We talked about the van to carry a wheelchair.
When we went to Amilities Expo,
I've learned that a wheelchair is really expensive.
The ordinary wheelchair is 23,000 dollars,
and it costs 30,000 dollars to arrange it.
So at least one needs to pay 50,000 dollars.
Most people cannot afford to get it.
As USA is such a car-society,
I'm really concerned about our future life.
Anyway, I'm going to do my best for the fund-raising.
Just like this, we talked a lot in th meeting.
I got tired from plenty of updating.
Translated by Yuki Taterin
Apr 18, 2011
Hajime's favorite game
Hajime loves to play games.
Sometimes I cannot stop wondering if he is too crazy of a game lover?
It's a little troubling.
Last December, his grandmother living in Japan bought an Ipod Touch for him.
(It is the only thing her sick grandson can do.)
The Ipod has a lot of free applications.
Of course it has lots of different games, too.
These games have good points and bad points・・・
It's a complicated problem.
First, the good points・・・
This is what Hajime wants to do before the day comes
when his hands don't work any more.
While he's playing with this game,
he didn't have difficulty breathing,
and even after the G-tube operation
his pains were relieved by the game.
(Rather I think he is too much concentrating on the game
and forgets about everything else.)
And bad points・・・
When he concentrates on games, Hajime loses himself.
He gets back to what he used to be when he was a little kid.
Even his facial expression changes, as a matter of fact, I don't want him to play with it for a long time as much as possible.
But he can do it only while his hands can still move.
So far I've given him permission to play games except at school.
As his mother, I don't want Hajime to do it often, but it can't be helped.
After some months, he will not be able to play with this favorite game of his any more. It makes me feel complicated.
Translated by Yuki Taterin
Sometimes I cannot stop wondering if he is too crazy of a game lover?
It's a little troubling.
Last December, his grandmother living in Japan bought an Ipod Touch for him.
(It is the only thing her sick grandson can do.)
The Ipod has a lot of free applications.
Of course it has lots of different games, too.
These games have good points and bad points・・・
It's a complicated problem.
First, the good points・・・
This is what Hajime wants to do before the day comes
when his hands don't work any more.
While he's playing with this game,
he didn't have difficulty breathing,
and even after the G-tube operation
his pains were relieved by the game.
(Rather I think he is too much concentrating on the game
and forgets about everything else.)
And bad points・・・
When he concentrates on games, Hajime loses himself.
He gets back to what he used to be when he was a little kid.
Even his facial expression changes, as a matter of fact, I don't want him to play with it for a long time as much as possible.
But he can do it only while his hands can still move.
So far I've given him permission to play games except at school.
As his mother, I don't want Hajime to do it often, but it can't be helped.
After some months, he will not be able to play with this favorite game of his any more. It makes me feel complicated.
Translated by Yuki Taterin
Apr 17, 2011
Neck muscle weakness
Today, our three kids went to see the movie, called "Rio". Since Hajime became adult, we can do that.
Before they went out to the theater, Hajime looked up and we realized how his neck muscle was getting weak. I felt very sad knowing how this thing is happening...
He looks very painful when look up and his muscle seems not strong enough to support his neck/ head and its weight. When he looks up, he even needs to use hands to hold his neck.
His legs look still strong and I believe no whole-chair is needed any time soon. However, if he keeps losing the neck muscle, he may need the whole chair.
Please God, please do not let Hajime’s muscle go away any more.
(translated by YM & RM)
Before they went out to the theater, Hajime looked up and we realized how his neck muscle was getting weak. I felt very sad knowing how this thing is happening...
He looks very painful when look up and his muscle seems not strong enough to support his neck/ head and its weight. When he looks up, he even needs to use hands to hold his neck.
His legs look still strong and I believe no whole-chair is needed any time soon. However, if he keeps losing the neck muscle, he may need the whole chair.
Please God, please do not let Hajime’s muscle go away any more.
(translated by YM & RM)
The saliva matter I am seriously worried about...
These days, Hajime has difficulty in breathing due to saliva sticking in his throat. Even today, he had difficulty in breathing right before he went to the theater. Although we use the patch to reduce saliva, its effect does not last long and no longer than 2 days, while it was supposed to work 3 days. Since the patch is somewhat pricy, we wanted to use for 3 days if possible but we cannot as it causes him difficulty of breathing. Thus, we have to replace every 2 days.
Since the doctor can make out a prescription for only the 30days worth supply, we will be short by 5 sets if we use at the pace of 1 patch for every other day. This is really cumbersome but regulated by the insurance policy.
I am really worried about him having difficulty in breathing again. Since saving his life is our first priority, we will continue to use/ replace the patch as needed and will talk with the doctor when we run out.
(translated by YM & RM)
Since the doctor can make out a prescription for only the 30days worth supply, we will be short by 5 sets if we use at the pace of 1 patch for every other day. This is really cumbersome but regulated by the insurance policy.
I am really worried about him having difficulty in breathing again. Since saving his life is our first priority, we will continue to use/ replace the patch as needed and will talk with the doctor when we run out.
(translated by YM & RM)
How many more days...
We had an Egg hunting picnic, which is one of the church events today.
As Hajime and his brother belong to the youth group of church,
they had to hide the eggs, and their little sister was looking for eggs.
It was a nice day and the sunshine was beautiful.
After the event,
Hajime and his little brother saw a musical
at school across from the church.
They enjoyed the fantastic show to their heart's content.
After picking them up,
I, Hajime and his little brother,
three of us together, went to Starbucks.
(Last time, Hajime couldn't joi us.)
When he is with his family,
he doesn't have to care about others
and he can relax.
On this day too, he told us how he feels honestly,
and we had a good time together.
And he said;
"Mom, my right hand can't work.
it's no good..."
...He said so.
When he goes to the hospital and the doctor asks him,
he always answer, "It's okay."
But he himself knows best about the condition of his own right hand.
Actually, his right hands are shaking terribly, day by day.
Even when he puts his hand on something,
the shake doesn't stop.
How many more days can he use his right hand.............?
It hurts a lot to think that way.
When I ask him,
"what do you want to do while you can use your right hand?"
he answered, "I want to draw a picture."
Hajime has such a creative talent,
so I'm looking forward to seeing his painting.
It will be one of the best memories of him.
When he finishes the painting, I will update it
But..."How many more days?"
...when I ask myself this question again and again....
it hurts me a lot.
Translated by Yuki Taterin
As Hajime and his brother belong to the youth group of church,
they had to hide the eggs, and their little sister was looking for eggs.
It was a nice day and the sunshine was beautiful.
After the event,
Hajime and his little brother saw a musical
at school across from the church.
They enjoyed the fantastic show to their heart's content.
After picking them up,
I, Hajime and his little brother,
three of us together, went to Starbucks.
(Last time, Hajime couldn't joi us.)
When he is with his family,
he doesn't have to care about others
and he can relax.
On this day too, he told us how he feels honestly,
and we had a good time together.
And he said;
"Mom, my right hand can't work.
it's no good..."
...He said so.
When he goes to the hospital and the doctor asks him,
he always answer, "It's okay."
But he himself knows best about the condition of his own right hand.
Actually, his right hands are shaking terribly, day by day.
Even when he puts his hand on something,
the shake doesn't stop.
How many more days can he use his right hand.............?
It hurts a lot to think that way.
When I ask him,
"what do you want to do while you can use your right hand?"
he answered, "I want to draw a picture."
Hajime has such a creative talent,
so I'm looking forward to seeing his painting.
It will be one of the best memories of him.
When he finishes the painting, I will update it
But..."How many more days?"
...when I ask myself this question again and again....
it hurts me a lot.
Translated by Yuki Taterin
Apr 15, 2011
A precious experience
Today, our church member arranged a great thing. It was to visit a
shooting location of a famous TV drama.Well, it was only Hajime, the
person and our minister, though.
It sounded like he had a lot of fun.The sound track CD has a lot of
good piece of musics and I like it a lot. But I have seen only several
episodes.
Usually, of course no one can see the shooting. So, this was an
exceptional case for Hajime as people knew his sickness. So, we were
told to zip our mouth and never say anyone about it. Oh, it was so
shame that we cannot tell which drama it was!
Considering his condition yesterday, we worried his visit to the
location today. But it was needless fear. When he came back, he was so
happy and smiling. We could see Hajime's such a wonderful smile and
joy, and we saw it last time must be a while ago.
Taking pictures with each actor and actress, setting of stages here
and there... I could see clearly how much he enjoyed, the pictures
told me.
I really appreciate my friend giving Hajime such a great opportunity.
It will become a beautiful lifetime memory of Hajime.
(Translated by Satoko Okamoto)
shooting location of a famous TV drama.Well, it was only Hajime, the
person and our minister, though.
It sounded like he had a lot of fun.The sound track CD has a lot of
good piece of musics and I like it a lot. But I have seen only several
episodes.
Usually, of course no one can see the shooting. So, this was an
exceptional case for Hajime as people knew his sickness. So, we were
told to zip our mouth and never say anyone about it. Oh, it was so
shame that we cannot tell which drama it was!
Considering his condition yesterday, we worried his visit to the
location today. But it was needless fear. When he came back, he was so
happy and smiling. We could see Hajime's such a wonderful smile and
joy, and we saw it last time must be a while ago.
Taking pictures with each actor and actress, setting of stages here
and there... I could see clearly how much he enjoyed, the pictures
told me.
I really appreciate my friend giving Hajime such a great opportunity.
It will become a beautiful lifetime memory of Hajime.
(Translated by Satoko Okamoto)
Apr 14, 2011
Examination with the speech therapist
Today, we had an appointment with a speech therapist. The examination
was with tobii, but Hajime was somewhat not feeling cheerful and did
not want to use it.
In this few months, whenever he went to the hospital for his disease
progressed, always he had bad temper. It looked not like him because
Hajime always communicate with people with his great smiles. But to
doctors, very different. It must be very painful for him as Hajime has
to face to his disease directly.
Especially today, he was exhausted and yawning again and again. He was
really like a little kid.
Also, I asked him if he feels labored, because he could not control
drool. He replied "A bit." The patch behind his ears have been
effective too much and made his throat dry. He said it was difficult.
This patch is effective for 3 days, and today was the first day. So it
must be too strong. Well, good and bad...
After that, a physical therapist came to examine his right arm muscle.
And it was said that his right arm muscle weakness is more visible.
His tips and shoulders seemed still strong, but arm muscle was lost
certain amount. Whenever we hear such a thing, we want to shut our
ears. More than us, Hajime must feel the pain... We really feel sad.
Hajime's hands pushing the touch panel of tobii is shaken a lot, we
may need eye system earlier than we expected.
(Translated by Satoko Okamoto)
was with tobii, but Hajime was somewhat not feeling cheerful and did
not want to use it.
In this few months, whenever he went to the hospital for his disease
progressed, always he had bad temper. It looked not like him because
Hajime always communicate with people with his great smiles. But to
doctors, very different. It must be very painful for him as Hajime has
to face to his disease directly.
Especially today, he was exhausted and yawning again and again. He was
really like a little kid.
Also, I asked him if he feels labored, because he could not control
drool. He replied "A bit." The patch behind his ears have been
effective too much and made his throat dry. He said it was difficult.
This patch is effective for 3 days, and today was the first day. So it
must be too strong. Well, good and bad...
After that, a physical therapist came to examine his right arm muscle.
And it was said that his right arm muscle weakness is more visible.
His tips and shoulders seemed still strong, but arm muscle was lost
certain amount. Whenever we hear such a thing, we want to shut our
ears. More than us, Hajime must feel the pain... We really feel sad.
Hajime's hands pushing the touch panel of tobii is shaken a lot, we
may need eye system earlier than we expected.
(Translated by Satoko Okamoto)
Apr 13, 2011
A visit of Home care nurse
Today, Home care nurse we had requested after Hajime's operation
visited our home.
The nurse came a little before appointed time, 4 PM, and explained
every detail. So, we could learn a lot from her.
Hajime has a lot of saliva and has problems because of this. But we
heard there was a suction machine to suck the saliva out. We will ask
to a doctor about it next time. We have to be careful about saliva
because it may cause pneumonia if it goes into his lung. We also have
to be careful when he sleeps because Hajime lays down on his back.
And the tube to his stomach will have to be exchanged around after 4
to 6months. It sounded so painful, though the nurse said it would not
have any pain... Hajime's attending doctor said it would be fine for 1
year, though...
Foods for the tube are nutritions such as "Ensure" and vegetable and
chickens turned into puree. Those purees are put into the tube through
syringe to his stomach. Especially the nurse instructed us that turkey
would be good because it has a lot of protein.
Also, the nurse taught us to give Hajime some water between lunch and
dinner, and flush the tube after putting nutritions and puree.
Surprisingly, she suggested us to put some soda to the tube if it was
difficult to flush. But... it sounds very strange to put some soda to
the tube if it is in Japan, doesn't it? Well, that is very American!
The nurse brought 4 extra syringes, and it was a great help! We had
only 3, and we needed it a lot because Hajime has to bring it to his
school. We also did not know where to buy! Maybe at a pharmacy?
The nurse will come another twice, so I would be able to ask things I
do not know at that time.
Ah, Home care nurse was very great!
Translated by Satoko Okamoto
visited our home.
The nurse came a little before appointed time, 4 PM, and explained
every detail. So, we could learn a lot from her.
Hajime has a lot of saliva and has problems because of this. But we
heard there was a suction machine to suck the saliva out. We will ask
to a doctor about it next time. We have to be careful about saliva
because it may cause pneumonia if it goes into his lung. We also have
to be careful when he sleeps because Hajime lays down on his back.
And the tube to his stomach will have to be exchanged around after 4
to 6months. It sounded so painful, though the nurse said it would not
have any pain... Hajime's attending doctor said it would be fine for 1
year, though...
Foods for the tube are nutritions such as "Ensure" and vegetable and
chickens turned into puree. Those purees are put into the tube through
syringe to his stomach. Especially the nurse instructed us that turkey
would be good because it has a lot of protein.
Also, the nurse taught us to give Hajime some water between lunch and
dinner, and flush the tube after putting nutritions and puree.
Surprisingly, she suggested us to put some soda to the tube if it was
difficult to flush. But... it sounds very strange to put some soda to
the tube if it is in Japan, doesn't it? Well, that is very American!
The nurse brought 4 extra syringes, and it was a great help! We had
only 3, and we needed it a lot because Hajime has to bring it to his
school. We also did not know where to buy! Maybe at a pharmacy?
The nurse will come another twice, so I would be able to ask things I
do not know at that time.
Ah, Home care nurse was very great!
Translated by Satoko Okamoto
A bowling in November
I remember I wrote the following blog in November last year regarding the bowling.
http://ameblo.jp/zap788/archive1-201011.html
Please take a look at the video we captured last time we played.
This video always makes me cry... it is really difficult to accept that the things have been getting worse so fast even in such short period of time and only a couple of months. I cannot bear…
God, please stop it worsening.
(translated by YM & RM)
http://ameblo.jp/zap788/archive1-201011.html
Please take a look at the video we captured last time we played.
This video always makes me cry... it is really difficult to accept that the things have been getting worse so fast even in such short period of time and only a couple of months. I cannot bear…
God, please stop it worsening.
(translated by YM & RM)
Apr 12, 2011
But still I cry...
I asked Hajime about his current life.
The question I asked "what is the most fun for you?", he replied
"Spending time with family." Hajime said he felt relaxed when he was
with us, the family.
Instead, I asked the most painful thing. He answered "When I talk at
school or think about I cannot eat anymore."
He cannot communicate with friends and teachers at school when he
talks. This has been greatly serious for him, he said.
It seemed he was still hesitated using the speaking device at school.
"People may make fun of me..." he said. He is afraid of being made fun
of. I did not know what I could say to him about this.
I cannot stop crying while I listen to him like this. I really feel
that I am not a good mother... I want to hold him with soft and loving
words to comfort him, but my word does not come out.
To Hajime, facing and will face to painful and difficult thing all the
time, I cannot say anything precious. On contrary, my tears come out.
I am so sorry Hajime. Please forgive your mother...
(Translated by Satoko Okamoto)
Apr 11, 2011
Bowling
Hajime played bowling where we went to a trip.
His right arm was weakened, and he held the ball with great difficulty.
Yet I was relieved as he was enjoying.
At the same time, I am so sad because maybe this will be the last time
for Hajime to play Bowling.
(Translated by Satoko Okamoto
His right arm was weakened, and he held the ball with great difficulty.
Yet I was relieved as he was enjoying.
At the same time, I am so sad because maybe this will be the last time
for Hajime to play Bowling.
(Translated by Satoko Okamoto
Apr 8, 2011
A Good Day
Today had a happy start with Hajime looking great from morning. It might be the patch working because it seemed like he was in a good condition.
For some days now, maybe because he’s tired, he’s been sleeping a lot, but today he woke up in a good mood and stayed energetic the entire day.
I really feel like crying when I see his smiles. But I hold it back and my husband and I smile at him. This family time spent in smiles is really the happiest time like no other.
Right now we are enjoying bowling. Even without much strength in one arm, he's challenging it in all smiles. He is really just a regular teenager.
I hope this continues with more of this kind of day.
Translated by Christine Shirota (American English)
For some days now, maybe because he’s tired, he’s been sleeping a lot, but today he woke up in a good mood and stayed energetic the entire day.
I really feel like crying when I see his smiles. But I hold it back and my husband and I smile at him. This family time spent in smiles is really the happiest time like no other.
Right now we are enjoying bowling. Even without much strength in one arm, he's challenging it in all smiles. He is really just a regular teenager.
I hope this continues with more of this kind of day.
Translated by Christine Shirota (American English)
Apr 7, 2011
A Patch Behind His Ear
Last night he was coughing so much.
He was coughing till the middle of the night.
I thought, “He’s going to develop pneumonia if this continues.” So I used the patch that decreases saliva production for the first time. The effectiveness of it was tremendous. It’s something that you put behind the ear. He stopped coughing within minutes after putting it on.
The patch was prescribed by a doctor from UCLA. It was recommended a while back when we went but we never had the chance to use it so we didn’t know how effective it was.
Lately I have been thinking that I should use it because he has much more saliva now, but I just haven’t. And right now I am surprised at how well it worked.
Our main doctor from Kaiser told us that he doesn’t necessarily need it but if the doctor from UCLA says so, the prescription will be given….and he approved it.
I experienced it firsthand of how doctors in the same neurology specialty can be so different.
I have to give my hats off to UCLA! Wow!
Translated by Christine Shirota (American English)
He was coughing till the middle of the night.
I thought, “He’s going to develop pneumonia if this continues.” So I used the patch that decreases saliva production for the first time. The effectiveness of it was tremendous. It’s something that you put behind the ear. He stopped coughing within minutes after putting it on.
The patch was prescribed by a doctor from UCLA. It was recommended a while back when we went but we never had the chance to use it so we didn’t know how effective it was.
Lately I have been thinking that I should use it because he has much more saliva now, but I just haven’t. And right now I am surprised at how well it worked.
Our main doctor from Kaiser told us that he doesn’t necessarily need it but if the doctor from UCLA says so, the prescription will be given….and he approved it.
I experienced it firsthand of how doctors in the same neurology specialty can be so different.
I have to give my hats off to UCLA! Wow!
Translated by Christine Shirota (American English)
Apr 6, 2011
Being depressed...
These days, Hajime seems kind of depressed. It looks to me that he became a really sick person.
Maybe because of increased saliva, he tends to turn his face to right (as it is easer for him when he can still use his muscle) and look down. This pose makes him look very sad.
Even his smile with less energy, and his left arm put down all the time makes him look very tired.
I am so worried about him.
However, he must find out by himself something makes him enjoy and energized. It is not easy but he has to find it for himself and to live strong. Hang in there! Hajime. We are always with you.
(translated by YM & RM)
Maybe because of increased saliva, he tends to turn his face to right (as it is easer for him when he can still use his muscle) and look down. This pose makes him look very sad.
Even his smile with less energy, and his left arm put down all the time makes him look very tired.
I am so worried about him.
However, he must find out by himself something makes him enjoy and energized. It is not easy but he has to find it for himself and to live strong. Hang in there! Hajime. We are always with you.
(translated by YM & RM)
Apr 4, 2011
Through Experience
Ever since last week, Hajime has started to have fears toward eating. He didn’t go to youth program at church on Sunday.
Up until now, he couldn’t hold back his appetite, but now, ever since he choked on his food at youth group, he’s so scared that he barely eats.
Even at church fellowship, he started to have breathing complications due to large amounts of saliva and we left church earlier than usual. Afterwards he couldn’t go to youth group either because he couldn’t get over his fear.
Just like this, there are things you can’t learn unless it’s been experienced. Normally, sickness isn’t something that’s favorably learned, but through experiencing a frightful moment, there comes a realization to… watch out!
Otherwise, the desire to eat can’t be held back. I felt that the day has come where I am able to think that “In some sort of way, this is good.” I really feel sorry for him, but…..
Translated by Christine Shirota
Up until now, he couldn’t hold back his appetite, but now, ever since he choked on his food at youth group, he’s so scared that he barely eats.
Even at church fellowship, he started to have breathing complications due to large amounts of saliva and we left church earlier than usual. Afterwards he couldn’t go to youth group either because he couldn’t get over his fear.
Just like this, there are things you can’t learn unless it’s been experienced. Normally, sickness isn’t something that’s favorably learned, but through experiencing a frightful moment, there comes a realization to… watch out!
Otherwise, the desire to eat can’t be held back. I felt that the day has come where I am able to think that “In some sort of way, this is good.” I really feel sorry for him, but…..
Translated by Christine Shirota
Apr 3, 2011
The Problem with Saliva
Lately, Hajime’s saliva is increasing and we are troubled by it. During the progress of ALS there’s a problem that saliva increases.
When he speaks, the saliva adds to the problem and he can’t open his mouth as much. And whenever he sneezes, coughs or laughs, the saliva comes out so he can’t be without tissue or a handkerchief.
When I see him like this, reality hits me hard and it’s heartbreaking.
I have spoken to the doctor from UCLA about his large amounts of saliva before and I got a prescription but I couldn’t get the medication at UCLA so I got it prescribed from Kaiser and I got a patch to hold back his saliva. I think I’m going to try it since I have it right now.
Translated by Christine Shirota
When he speaks, the saliva adds to the problem and he can’t open his mouth as much. And whenever he sneezes, coughs or laughs, the saliva comes out so he can’t be without tissue or a handkerchief.
When I see him like this, reality hits me hard and it’s heartbreaking.
I have spoken to the doctor from UCLA about his large amounts of saliva before and I got a prescription but I couldn’t get the medication at UCLA so I got it prescribed from Kaiser and I got a patch to hold back his saliva. I think I’m going to try it since I have it right now.
Translated by Christine Shirota
The Communion in Which Device was used
Today is the day that we go to our weekly church service. It is also the first Sunday of the month, which is a day of Communion.
Hajime had the duty to hold the cup in this Communion and he served today also. But because he can’t speak, he took his speaking device for the first time.
When I see my son in smiles from the beginning to the end, I really think that he’s doing so much. And even though he’s a teenager at a period of time where various things would normally bother and be self conscious, he’s doing all these things that put him in the spot light….
Translated by Christine Shirota
Hajime had the duty to hold the cup in this Communion and he served today also. But because he can’t speak, he took his speaking device for the first time.
When I see my son in smiles from the beginning to the end, I really think that he’s doing so much. And even though he’s a teenager at a period of time where various things would normally bother and be self conscious, he’s doing all these things that put him in the spot light….
Translated by Christine Shirota
Apr 1, 2011
Fantastic Illustration
A professional CG animator/illustrator/creator, Tetsuya Kawaguchi (blog) drew this fantastic illustration for Hajime and gave it to him as a gift.
He expressed Hajime’s feelings towards the disease in this illustration. In this illustration, Hajime is crushing the disease, ALS, in his hands.
Hajime is a boy with a very handsome smile, so I pushed for the illustration to express, “Beating the disease with a Hajime Smile.”
I never would have thought that somebody professional would draw Hajime as an illustration. I am sincerely grateful to Mr. Kawaguchi. Thank you very much.
And I’m thinking about making a t-shirt with this illustration. This is really nice too, I like it very much.
When it’s done, I’ll write about it and post.
Thank you Mr. Kawaguchi for all these things that you’ve done!
Translated by Christine Shirota
He expressed Hajime’s feelings towards the disease in this illustration. In this illustration, Hajime is crushing the disease, ALS, in his hands.
Hajime is a boy with a very handsome smile, so I pushed for the illustration to express, “Beating the disease with a Hajime Smile.”
I never would have thought that somebody professional would draw Hajime as an illustration. I am sincerely grateful to Mr. Kawaguchi. Thank you very much.
And I’m thinking about making a t-shirt with this illustration. This is really nice too, I like it very much.
When it’s done, I’ll write about it and post.
Thank you Mr. Kawaguchi for all these things that you’ve done!
Translated by Christine Shirota
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