Dec 29, 2012

From Far Away

This has been a happy time for Hajime because he has had many visitors.
Yesterday, some friends came to see Hajime from far away.
It takes two hours, but the whole family came all the way from San Diego to Pasadena.
Thank you, Yukko, Hiro, Hazuki!

They are very close friends of ours.  Our family has visited their home in San Diego before. We hadn't seen them since the time Hajime had to be hospitalized.  Everyone is so kind, and they are always thinking of us.  I am very grateful.
They hadn't seen Hajime in a long time, so they had a lot to talk about.  Hajime looked happy.

I am so very thankful for this time with them.

(translated by MS)

Dec 27, 2012

A Surprise Gift

We had a surprise on Sunday.

Hajime's favorite pastor, Allison, came to see him.
She has been helping us and supporting us so much, even after Hajime got sick.
But she became busy and couldn't visit for a long time.
I think it's been several months since she last came, so Hajime was very happy to see her.

At night,  Hajime's friends who are home from college came over.
They sang Christmas carols for us.  We had a very good time.

Thank you all so very much!
We had a wonderful Christmas!

(translated by MS)

Dec 24, 2012

A Casual Word

Someone told me something that made me very happy.
He is someone that I've recently gotten to know.
He said that he hadn't read much of my blog about Hajime before.
But he is starting to read it now little by little.

He says he wants to do something for Hajime, but first he has to meet him!
It makes me so happy to hear words like this.

I think it's hard for someone living a normal life to understand how hard Hajime is fighting to live.

Normal people have five senses, but Hajime cannot move or speak at all, so he can't communicate anything he wants to say.  He can't eat.  The only thing he can do is watch TV.  That is his life forever.

I can't say anything to people who tell Hajime, "You'll be fine for sure", and never come back to visit.  This is what Hajime hates the most--to be told things like this.  It makes him feel hopeless.

I am bothered by all kinds of things, but I can take being criticized.
What I cannot take is being told things about Hajime.
I struggle with these feelings every day, but I received this message from my friend and it made me very happy.

Thank you so much!

(translated by MS)

Wonderful visitors

Friday night, High school principal Janet visit to see Hajime.

She comes to see Hajime from time to time. I know she is very busy. We are so thankful.

Saturday afternoon, Lia and Josh brought us a Christmas flavor to us.

Lia played a flute.

Josh played a keyboard.

They played the Christmas music.
They also read bible for Hajime.

During the holiday season, many people visit Hajime. Hajime is enjoying very much.

(translated by HM)

Dec 20, 2012

A Busy Afternoon

We had a very busy afternoon yesterday.

First, his friends Lia, Catherine, and Helen came over after 1:00pm.

They are all home on winter break and they looked great.  They read the Bible to us.  Thank you, everyone.

Then at 2:00pm,  Rev. Sasaki, Rev. Fuchino, and Shoko came.    (I'm sorry the picture is out of focus).

This time, they sang Hajime's favorite praise songs for him.

After that, they prayed for him.
Thank you so much for coming to pray for us.  Hajime and I both feel uplifted.

And, at 3:00pm, we gave him a bed bath...

His younger brother Ryo came home, and then his younger sister Yuki came home...
So it was a busy afternoon.
But we hadn't seen these visitors in a while, so I think Hajime was happy.

(translated by MS)

Dec 17, 2012

The New Nurse

Hajime had to start antibiotics again.  He's been taking antibiotics since last week.
He has a runny nose but no fever, so I'm wondering if he really needs to take antibiotics.
We have to think carefully because he can only endure so much.

Our new weekend nurse started yesterday.
She seems like a sweet person, but no matter how many times I explained what she has to do, she can't remember and keeps making the same mistakes.

For Hajime, the respirator is the most important thing.  It will be a problem if she can't remember what she needs to know about it.
She only comes on the weekends, so she may forget after a week...

My husband and I are a bit worried.

To change the subject,  I have received many messages of encouragement.  I am grateful to all of you for always being so concerned for our family.

(translated by MS)

Dec 16, 2012

I Am So Sad

I am so, so sad......
I'm wondering if I should quit blogging......

People have so many different opinions.

(translated by MS)

Dec 13, 2012

A Sudden Fever

On Sunday night, he came down with as high a fever as he's ever had.
It was 101 degrees (38 degrees C), which is not a big deal for the average person, but for Hajime is quite high.
Even after we gave him Tylenol, it stayed above 100 degrees but after allo maybe because of all of our prayers, his fever has remained stable.

The doctor thinks Hajime probably caught a cold, so I'm not that worried.  I guess he's fighting the cold with his own immune system.
I think that's great, because having a fever means that the body is fighting.

This morning, he had a lot of blood drawn from both thumbs.  The person who did it today was good.  I think it's hard to take blood from Hajime because his veins are narrow.  Actually, he was supposed to have had his blood drawn yesterday.  The person who came yesterday was here for her second time, but she couldn't do it.  She had to ask the other nurse to do it. She got flustered and scared and just left.  The first time she came, she tried and couldn't draw blood and made all kinds of excuses. After poking him a second time, she was finally able to draw his blood.

He is also supposed to give a urine sample.  I hope the results are good.

(translated by MS)

Dec 10, 2012


In preparation for guests, I thought I'd change around our room a little.  We moved the tobii here and Hajime's wheelchair there and so now it looks like this.

We moved the sofa so that we can watch TV, but now it seems like Hajime is a bit farther away.  It's not easy...

Hajime's runny nose seems to be much better.  But his secretion is green and smells pretty bad.
He had a little fever for a few days last week, but he doesn't have a fever now.  He seems pretty good.
But emotionally, he is down.

(translated by MS)

Dec 8, 2012

His Pupils and Eyelids

Recently, some friends that I haven't seen in a long time told me, "I've been worried about you", and I felt really happy.
When I'm blogging, I hear all kinds of opinions from people.  Sometimes they get me down and sometimes they lift me up.
Thank you for everything.

Hajime is having a much harder time trying to move his eyes.  We almost can't tell the difference between yes and no, and it takes him a long time to give a response.
That's because his pupils can't stay fixed and when he tries to move them, his eyelids close.  It takes him a long time to answer.

Mary came to visit yesterday.  Hajime's eyes were red from crying just then.
We had been giving him a bed bath before Mary came, but I think he was upset about something that happened during the bath.
It looked like Hajime was trying to tell Mary about it, and it was taking him a very long time to explain.

At these times, we worry about Mary, but she listened patiently to Hajime without concern for the time.
What happened was that the day nurse hurt Hajime when she was wiping his legs and that really bothered him.

It is also becoming quite difficult for him to communicate with his eyes, so I am very worried.  It seems that Hajime is able to understand what might happen in the future, and so he is feeling more and more depressed.  It looks like he isn't sleeping very well at night, so Mary said to give him a little something to stabilize him.

Hajime's grandmother and others are supposed to come visit early next year, so I hope Hajime can hang on until then...

(translated by MS)

Dec 6, 2012

Ultraman Tiga

Recently Hajime has been saying he wants to watch videos.
But I don't know which one out of the ones he has, so I ask him different questions.
It wasn't any of the ones I asked.  After a few days, I thought it might be a certain one so I asked.
It was Ultraman Tiga and Dyna.

Now that I think of it, he would set his alarm and watch it every week quite a while ago when it was being shown on Channel 18.2.
Of course, Hajime was still young when he was faithfully watching the programs that were broadcast in Japan.
He loved it that much.

Is there anyone who has some Ultraman Tiga DVDs?  When I checked on Japanese Amazon, I saw that they sell only used ones for about 50,000 yen.

Is there someone who can help us out?

Hajime may not be able to see much longer, so I'd like to let him see something that he really enjoys one more time.

If someone can help us, please let me know.

(translated by MS)

Dec 4, 2012

Birthday Plans

Hajime's birthday is approaching.
Last year, many of our friends came and celebrated with us.  We all sang Happy Birthday together.

Hajime will be 20 on his next birthday!
I want to have a big celebration this year too.

I'm planning to have a birthday party on Saturday, January 12.  It will be an open invitation so anyone can come.
I haven't decided on the details yet, but I will post them later when I do.
(If you think you can come, please email me).

My husband will unfortunately be gone for a meeting on the day of Hajime's actual birthday.
So I'm thinking of having the party on Saturday of that week.
To all of you who are reading this blog, please come.

(translated by MS)

Dec 3, 2012

I Can't Fight

Hajime's face was red from crying tonight.
I thought he might be hurting somewhere so I asked him, but he said no.

When I asked  him if it was about his illness, he replied yes.
Are you tired of it?  You can't fight anymore?

His answer was a shock to me.
I can't fight...I want to die...
As he said this, Hajime shed big tears.

In America, the individual's wishes are the most important.
I hurriedly said,  "Please, let's keep fighting.  You'll get better for sure!"

Hajime is really a sweet child.
He said yes.

Although, that was shocking incidnet.

(translated by MS)

Dec 2, 2012

Welcome Visitors

Hmmm...Hajime's infection is not improving.
His runny nose is still quite heavy and green.
He doesn't have a fever, but I am still worried.
But it isn't good if we worry too much.

Yesterday, our friends Toru and Mr. Kuraishi came to see Hajime.

They are dear friends who have come to visit many times.

They are both busy with work.
As you can see in this pict
ure, Hajime is happy.
We look forward to them coming again.

Please come to visit Hajime, everyone!

(translated by MS)

Nov 30, 2012

Hajime's Voice

Last night I was talking to my husband about Hajime's voicemail.  I start to really miss his voice whenever I hear his voice on the answering machine.

You probably haven't heard it much.

But I shed a tear...

I want him to get better soon and hear his voice again.

(translated by MS)

Nov 28, 2012

He Doesn't Want to Take Any Medicine

Even now, his breathing is still not stable.
His heart rate is high, and when he starts to have trouble breathing, it goes up to 140 right away.  I think it has a lot to do with how he's feeling.

We have been told to give him morphine when this happens.  We did give it to him last night, but he has been fighting taking any medication for a few months now.
When he has a fever, he doesn't want to take Tylenol...We've been told that he should take Ativan when he gets depressed, but he doesn't want to...At times like these, I don't know what to do.  But we've been continuing his care according to his wishes, so I guess all we can do is follow them.
Last night when I had him take the morphine, I encouraged him by saying, "You should take it because when you calm down, you might be able to breathe better!"

Hajime is not undergoing the usual treatment.  He is receiving pain management to make him as comfortable as possible. That's why they're using morphine.

As soon as he finished the IV antibiotic, he started taking a different antibiotic through his G-tube.  It has been several days, but he sometimes still gets a runny nose. There is an odor around his trache too, so I am worried.

I don't know if it's because of Hajime's cold, but one by one, everyone in my family has been catching a cold.  It looks like my husband is really sick right now. Until recently, Yuki was sick but she is well now.  I hope everyone including Hajime gets better.

(translated by MS)

Nov 26, 2012

Thank You for Coming

Thanksgiving is finally over and school will start again tomorrow.  The break felt long but it was also short.
It may have seemed short because my husband was busy with work.

I think it was good for Hajime because even though he couldn't taste any of the food, his friends came over to visit.
Danny, who moved away to Oregon, and Kevyn came to see him on the last day of vacation.

I'm happy that his high school friends came to see him on their vacation.

And many of my friends came too.

It really is fun to get together with people and have a good time.
Manami brought more of Hajime's favorite Studio Ghibli movies.
He's already watched three today.  Thank you, Manami!

Hajime is not doing very well, so he was prescribed a different antibiotic at the end of last week.  He is taking it three times a day again.
His breathing is not very good lately so I hope it does not turn into a big problem.

On top of everything else, I'm not doing too well either...
I've been bothered by something someone told me and I feel restless.
I have dreams about a traumatic day Hajime had, and I feel scared all day.  It's hard to explain but I feel like I'm going to burst.

(translated by MS)

Nov 23, 2012


We celebrated the third Thanksgiving since Hajime became sick.
The time has passed quickly.

The year that he became sick, our whole family took a trip to Las Vegas.
I remember very well eating turkey at our hotel.
I wish we could have taken a trip like that again the following year.  That year, he had been released from the hospital after a five-month stay and could no longer get out of bed, let alone eat anything.

Last year and this year, the many families who are helping us brought all kinds of food.
This year too our table is covered with so much food.
Joan is the one who arranges everything.
I am always so touched by everyone's kindness.
Thank you all very much.

I forgot to upload this the other day.  Here is a picture of his haircut.

Manami introduced us to a haircutter who can come to our house.  Her name is Chinatsu.
I forgot to take a picture of her this time, but I will for sure next time!
She is a very nice person, and she gave him a stylish haircut.

Kumiko, who usually comes to cut his hair, has been stuck in Japan, so she won't be able to come for awhile.  So that's why we asked Chinatsu to come.

The weather is good today and Hajime has been watching "Castle in the Sky (Laputa)" since the morning.
Right now everything is peaceful and I feel happy.

(translated by MS)

Nov 20, 2012

A Frightening Hour

This is what happened last Friday.

When I was changing Hajime's diaper sometime past noon,  the alarm on the respirator went off and so I immediately started suctioning.
I pressed the cancel alarm button many times but it didn't turn off.  (When the tidal volume is really low, you can't turn off the alarm).
The tidal volume stayed at around 200ml.
I suctioned several times.  I tapped his lungs to help him get rid of the secretion in his lungs, but even then, the volume would only get up to about 360ml.  When I asked Hajime, "Are you having trouble breathing?" he was crying and said yes.

When I checked the oxygen saturation, it was about 93 degrees.
With him not getting enough oxygen and the tidal volume not increasing, I did everything I could in such an emergency.  And still his breathing did not go back to normal right away.

I rushed to call my husband.  I kept calling for over thirty minutes because he was out picking up our children right then and didn't hear his phone.
So I gave up and waited until about 1:20 when he came home from picking them up.

I couldn't do anything except watch Hajime cry and complain about how he couldn't breathe.  That was an extremely scary feeling.
And the number just kept going down.
Holding back my tears, I just kept thinking, "What will I do if Hajime died right now?" so when my husband came home,  I burst out crying and crying.  I was scared being alone...I was very scared...I thought, "I'm so happy he made it!"

Mint was worried about me, so he never left my side.  Dogs are gentle, aren't they?  They understand their owners' feelings. What a help he was to me.

It truly was a frightening experience.
Ever since that time, I have not stopped thinking about death.  I have been thinking about how I should handle such a situation in the future.  What should I do
about those things that I couldn't do by myself that day?
In my dreams, I even see images of the moments right before he dies and I see myself giving up.
But just when I'm praying over and over "I hope this is a dream!"  I wake up.

Something changed inside me since this experience on Friday.  In a bad way.
All of this was traumatic for me and I am very scared.
It is a feeling that only someone who has gone through this can understand.

(translated by MS)

Nov 17, 2012

Yesterday Was a Bit Tough

Our new nurse started yesterday.
She seems like a very kind and reserved person so I hope things work out this time.  It really is difficult to decide things on just one interview.

Hajime finished his antibiotics on Tuesday morning, but his secretion is starting to turn green again.  There is an odor, and he has also had a fever for two days, so I'm a bit worried.  I don't know if Mary hasn't told us anything because she doesn't want us to worry, but I'm wondering if maybe Hajime has developed a resistance.   Of course, we can't keep giving him antibiotics...
I am very, very worried.

I am also concerned because something different is happening with the respirator.  Normaly, we do suction when his breath volume decreases and then volume become nominal. However this time, the volume drops even lower than before after the suction.   After a while, it does return to normal.
Mary said that we should check to see if air is leaking from the cuff or if the tube is loose somewhere.  The cuff was leaking a little air, so I feel a bit relieved that maybe that was the problem.

Yesterday when we were giving him a bed bath and we turned him, I panicked because the volume dropped very low and it did not return to normal even after he took breath after breath.  But after several times, I was relieved when it did finally go back to normal.

So yesterday was a tough day.

My friend Manami lent us a movie Hajime is recently into called, "Nausicaa of the Valley of the Winds", so he has been watching it almost every day.
In fact, he is watching it right now, next to me.  He watched it last night too.  There must be something about it that he really connects to.

I hope today will be a peaceful day...

(translated by MS)

Nov 15, 2012

Support Team Meeting

Last night we had a meeting with Hajime's support team.
Marilynne, Joan and Lydia attended.
Everyone was busy, but they took time out of their busy schedules to come.

This group has already been together for two years.
It was formed when Hajime's disease had not yet progressed much.
We did not meet when he was in the hospital so there were times when we didn't get together for awhile.  But I am grateful that they're still thinking of doing something for Hajime.

We discussed his current condition, the trip to California Adventure, the staff, and any concerns we had.
We talked about making plans to take Hajime out at least once a month.
I have a friend who can borrow a van and I'm hoping he can stay here for a long time.  Then we can take Hajime out often.

We also talked about fundraisers.
We have expensive bills for electricity, medicine, and other medical supplies.
But it's hard for us to ask for help, so I am very grateful for this idea.  First, I plan to write down in a notebook how much we are spending and for what.

Thank you for coming, support team members!

(translated by MS)

Sometimes Gently, Sometimes Harshly

Someone recently shared his opinions with me.

Until a few weeks ago, I was going out a lot.
This person could not stand watching this and told me the following...
That I should stay with Hajime all the time and not go out.
That maybe I was using my depression as an excuse to get out of taking care of Hajime.
That is what this person thought.

As you all know, I have been taking care of Hajime from morning until night.  Only at night do I have my husband's help and of course the nurse is there.

Until May of last year (when Hajime was still able to walk on his own)  I often went see friends or teach my craft class.
But from June our family's lives completely changed.
During the five months that Hajime was in the hospital, I went to the hospital every day, driving one hour one way, and we took turns staying overnight.
But I never thought, "I'm sick of this" or "I hate this".   Rather, I was so worried about Hajime's condition every day that I cried many times.

He was discharged in October.  At the beginning, we had no nurse, so my husband and I went through training at the hospital.  We didn't want Hajime to feel lonely so we thought of all kinds of things and moved his bed near the living room.

I wrote about this before, but I have depression.
I had had it for several years before all this happened.  My depression got really bad after Hajime got sick.  My husband was worried about me, so he tried to let me get out of the house.
It was not possible for my husband and me to go out together, so he wanted me to go out with my friends.

But because of Hajime's illness, I started to drift away from my friends and I couldn't see them as often.  There are some friends from that group who still come over to visit.  But there are also friends who did not know how to relate to me after Hajime's illness and just drifted away.
So, I had almost no opportunity to go out.

Still, I have to confront my own illness while taking care of Hajime.  This situation will not change.  I must face my illness in the midst of all this...because if I'm not well, my whole family will become depressed.

There was a time when I was rescued from my depression.
It was thanks to my friends who invited me out.
My husband was very relieved to see me being more cheerful, and everyone in my family supported me.
It was important for me to go out to ease my depression.

But I realized that I was relying too much on these people.
I don't know if it was because they thought so too, but some people changed their attitudes toward me and started to become more distant.
I feel very unsettled about that.

No matter how hard it was taking care of Hajime, I have never ever thought about running away from it.  So when someone tells me that he thinks that I want to run away, it makes me very sad.

As I write this blog about my son's incurable disease,  I hear many different opinions.  I know that can't be helped, and of course there are many things about myself that I must correct.  I waver between feeling thankful and feeling sad about the opinions that some people have of me.

People's opinions are sometimes gentle and sometimes harsh.

(translated by MS)

Nov 12, 2012

Deterioration of His Eyelid Muscles

Hajime's infection is not good.

He is diligently taking his antibiotics, but I'm a bit worried about the green secretion around his trache and the odor.
And, once in a while, his runny nose is very heavy.  It is very thick, especially from the right nostril.  His left side is just runny.

When he showed symptoms of the infection before, it was a few days after he had finished his antibiotics.  This time, he is in the middle of his course of antibiotics, so I am very concerned,  but Mary said not to worry because he doesn't have a fever.
But, to tell you the truth, I'm starting to wonder if it might be too late to wait until after he comes down with a fever.  I know we must evaluate everything calmly.

I plan to watch him carefully.

Yesterday, I looked at a video of Hajime from when he was in the hospital last year.
He looked more energetic, his face was more expressive, and he was able to open and close his eyes normally on his own.

The past few days, it has become extremely difficult for him to move his eyes.
We changed the way he indicates yes and no.  We changed it so that he moves his eyes sideways; yes is to the right and no is to the left.
When we ask Hajime a question, it looks like he is trying his best to move his eyes, but I don't know if his eyes have gotten stiff because his eyes are just partly open and we can see only the whites.
I have no idea if he is answering yes or no.

The disease continues to affect his eyes...
I just keep sighing.

(translated by MS)

Nov 9, 2012

Has He Built Up a Resistance?

Maybe he has already built up a resistance to the infection.

He is on a two-week course of antibiotics, but even during this time, his runny nose is green (and very thick) and there is green secretion on the gauze around his trache.
The secretion from his lungs is clear or cream-colored, so I'm not worried about that, but I am extremely anxious about the other two symptoms.

It will be a very big problem if the antibiotics are no longer effective.
Hajime's infection is very difficult to get rid of and we're afraid that it might also cause pneumonia, so we must watch him very carefully.

Mary is coming today, so I will discuss these things with her.

Last night, we interviewed someone for the day nurse position.
The three of us (Hajime, my husband, and I) had never all agreed on any of the people we interviewed before, but last night we did.
She's female, she has eight years of experience, and she has a gentle demeanor.
We contacted the agency today, so we plan to have her start from about the end of next week.
I hope this nurse will be good for Hajime and stay for a long time.

It is an extremely difficult task to make a decision based on one short interview.

(translation MS)

Nov 7, 2012

Something I Noticed

It's already been three days since that fun day at California Adventure.
I'm so happy that Hajime was able to have a really good time.

When we went, I noticed that not one person looked at Hajime in a funny way.  Isn't that wonderful?
It was very crowded but, of course, no one acted like, "Hey, this guy is in the way".  I was surprised at how different it is from Japan.

I think there are many people in Japan who look at disabled people differently.
I have seen that time after time.
But I was surprised at how, here in America, there are all kinds of facilities so that disabled people can go out and enjoy things like everyone else.  Also, rides can accommodate something as big as Hajime's wheelchair.
I wish that Japan would provide more facilities for disabled people.

Next time, we'd like to go to Disneyland.

Even if we can't go on the rides, it would be enough just to see the parade and the fireworks and the pretty decorations.
I'd like to go again during Christmas.

Hajime is still taking antibiotics for his infection.  But his secretion is green again so I'm a bit worried.  Why is this happening even when he's taking the antibiotics?

(translation MS)

Nov 5, 2012

Disney California Adventure Park

We went to Disney California Adventure.

We had to get all kinds of things ready including his oxygen, but with our friend Manami's help we were able to have a wonderful mini trip.

Our group included Manami, Manami's friends, Harumi, Eri, her son Ricky, and our family of five.
Thanks to all of you for your help.  I feel so blessed that we were able to spend such a wonderful time together.  Thank you!

I took about 150 pictures.  I posted a few of them here.

Dear God, thank you for a wonderful time!

(translated by MS)

Nov 3, 2012

The Day Before Disney California Adventure

We are finally going to Disney California Adventure tomorrow.
It has been almost two years since we went to Disneyland for his birthday in January last year.
This time, the main thing is to see the fireworks, not the fireworks at Disneyland but the light and water show called World of Color (at California Adventure).

This is a picture of the time we went to World of Color for Hajime's birthday last year.

We're going because Hajime wants to go, so I hope he can enjoy it.

The antibiotics are working well, so I'm hoping we can go without having to put tissue in his nose.  We do have to continue his suctioning.

We can only go for a short time because of his oxygen issue, so I hope we can really have fun.
We will borrow a van at 4:00 and then head toward Anaheim about 4:30.  When we get there, we will park in a lot on the first floor for wheelchair guests and take a private shuttle to the Disney park gate.

We have already bought the tickets, so I think we should be able to get in without any trouble.
It was Manami who made this little Disney trip possible.  It is because of her that we will be able to see a part of Disneyland that we've never seen. We will meet Manami at the gate tomorrow and then go immediately to the Aladdin show.

I plan to take a lot of pictures, so please take a look at them when I upload them onto my blog.

I'm already looking forward to tomorrow.

(translated by MS)

Oct 31, 2012

They Found the Bacteria

We found the cause of Hajime's infection.
They tested a sample of his runny nose.

In Wikipedia, the name of the bacteria is "Pseudomonas".
It rarely infects healthy people, but it appears in people with a weakened immune system,  people who are weak due to a long hospitalization or surgery, and elderly people who are bedridden.
Sometimes the infection can cause pneumonia.
If someone has an infection from this bacteria,  it is easy to develop a resistance and the treatment becomes extremely difficult.
They say that Hajime will always have this infection.

Two nights ago, we started him on anitbiotics right away.
We had been giving him other antibiotics through his G-tube for a few days before that.  If we were to stop that partway, he could develop a resistance more easily, so we are giving Hajime both antibiotics concurrently.

We've already given him antibiotics several times, but we were unable to completely kill off all the bacteria, so he got another infection.
I am very worried about the future.                                                                                                                                                                  

(translated by MS)

Oct 29, 2012

Taking a Family Picture

Yesterday we went to church to take a family picture.

It's for the church directory.

We hadn't used the wheelchair in a while, but we made it.

We got dressed up for the picture.  We dressed Hajime in one of Dad's shirts and some pants and he looked pretty nice!

First, a picture with me!

Then, a picture in our yard...


And then we arrived at church.

Hajime's nose was very runny, so he had to take pictures with tissue stuffed in his nose, but we took it out for the church picture.

It was the first time in a while that he went out, and his secretion was normal.  It is very important for him to move around like this, so that was good.

Well, we are finally going to Disneyland next Saturday!

(translated by MS)

Oct 26, 2012

I Love NHK!

It has gotten very cold the past few days.
The sun is very strong and it is hot if I don't close Hajime's curtains.  But the wind outside is very cold so I check to see where the sun is no longer hitting and open the windows to let fresh air in.
If the sun were a little less strong, I could open the curtains earlier.
And our windows are old and warped, so it's a struggle to get them open.  It's like I have to pull them as hard as I can and fight and fight and then finally they open.

The past few days, I've been leaving the TV on NHK during the day, and amazingly Hajime has been watching the whole time!
When I asked him before, "Shall I turn on the TV?" he would say no, but now he's saying he'll watch NHK.  I'm surprised.
So Hajime is watching TV all day.
It makes me happy.
He is watching everything...from the Wide Show to the news to cooking shows.
I am so grateful to NHK.  Thank yoouuu!

This is the same Hajime who didn't want to do anything every day.  It's a good sign!

(translated by MS)

Oct 24, 2012

The Effects of ALS

The doctor came to our house yesterday.

He examined Hajime and said, "This is not a head cold".  If it were a nasal infection and continued for several days as it has for Hajime, the area under his eyes next to his nose would be swollen.  But Hajime is not swollen.

Last Friday, we submitted a sample of his runny nose to the lab.  The results are not out yet, but they said that his blood, mucus, and urine tests were all normal.  That means he does not have an infection.

The doctor then explained why Hajime was having these symptoms.  ALS is progressive, so with his physical functions being destroyed, he comes down with a fever and his nose is constantly runny.  I've never spoken to Dr. Hirai about this so I am a little skeptical, but it will be very difficult if Hajime develops a runny nose in addition to his saliva problem.

I can understand this if there are other ALS patients who have gone through something like this, but I haven't read any blogs that go into enough detail about this.  If there is anyone who knows, please let me know.

We finished filling out the pink CPR form yesterday.

I learned that when the heart stops and resuscitative steps are taken,  there is still only a 5% success rate.  The chances are small even if you've called the ambulance to have them do CPR and they're trying to revive him on the way to the hospital, so they can't bring him back home.  We were told that if he does want to be at home for the end, then maybe it's better not to fill out this pink form.  But Hajime's wish is that they take resuscitative measures no matter what happens, so we were instructed to fill out the form and put it near his bed.

This is one thing we really do not want to have to go through and every time they talk about it,  I feel like my heart is freezing up.  While I think that everything will be OK,  realistically I know there is a chance that his heart will stop, so we need to get various things in order.

For me as a parent and as a fellow human being,  this is a very painful time.

(translated by MS)

Oct 22, 2012

I Was Energized

Today was a beautiful day.  For the first time, we opened the window in Hajime's room with just the screen.  We opened the back door too and let the breeze in.  The breeze felt wonderful, and Hajime's face looked like he was saying,  "Ahhh, that really feels good!"

We had not opened his window before because a lot of ants would come in every time we opened it.  Also,  it was often hot, so we kept the curtains closed and just controlled the room temperature with the air conditioner.  But today the air from outside was actually that was our first time!  It was perfect.

Hajime was able to feel like he was outdoors while still lying in bed, so I'd like to open the window again for him on days when there is a good breeze.

On such a beautiful day, something even more wonderful awaited us!
Our friends, husband and wife, Taka and Mai, came to visit.

They are dear friends who truly want to support Hajime.  They want everyone to know about Hajime, and so they've told all the people they know about him.  They want Hajime to regain his spirits, and I have been uplifted and encouraged too.

They told him, "Hajime, you are really hanging in there.  Hajime, you're doing great!"  and Hajime looked very happy.
These words can start to lift his spirits.
We received a gift more precious than anything else.

I, too, had been depressed lately, but thanks to our friends,  I felt energized and encouraged.  I was able to feel a great calmness and healing with them and a warm feeling filled our house.

There will be many things in the future, but I hope that we can continue to be friends.  It makes me happy to think that there are people who really understand what we are going through.  They told us that their parents are also cheering Hajime on from Japan.  What a love-filled family!  I am thankful that we were able to meet them.

Thank you very much for coming today, Taka and Mai!

(translated by MS)