Feb 29, 2012

Bimonthly Evaluation

Yesterday was Mary's scheduled visit so she came over.
Every two months, she does an evaluation to see if he can continue to receive palliative care support, and yesterday was that day.
This palliative care is very good. The care that this team provides is vital to Hajime's future, so I hope they will continue to come.
But I worry that if Hajime's condition stabilizes, he won't be able to receive this care anymore. Hajime's situation is serious enough to qualify him for this kind of service. Mary told me not to worry. But every time she comes for the evaluation, we become anxious.

As for Hajime's bedsores, they have completely healed, so I feel a little less worried. But she did tell us to continue turning him over every two hours. The toes on his left foot are a little red, so she also told us to keep his feet elevated as much as possible by propping them up with a small cushion. Hajime lies on his left side with his legs bent, so I think the redness was caused by that. I must keep an eye on that.
And, his toes have started to stiffen in one direction. It made me realize that it is extremely important to massage his ankles.

Now, for Hajime's eyes, as I have written before, I think there is a limit to how much he can open his eyes. They say that ALS basically does not affect the eyes, but Hajime's eyes do not open very wide, so there are many times when I do not know if he is telling me yes or no. That may be because there are many days when he is in a daze from the side effects of the medications he is taking. Now that he can no longer use his hands and feet, his eyes are very important in his communication, so I wish that he could talk with us more with his eyes.

Lastly, the opening at the base of his neck where his trach is inserted is getting bigger. We need to be very careful about this area, but it is always wet (due to his secretions), so it is not an area we can really keep dry. Mary told us we will have to change his gauze more frequently. We are also supposed to apply a cream as a safeguard, so we must not forget to do that, either.

I am starting to feel more at peace, little by little...because I know that God is always with me.
I am so thankful.

( Translated by MS )

Feb 28, 2012

Somewhere to move

Yesterday, Hajime’s arm gets red.

It is still not sure what is causing this but it sometime happening on his right arm. Somehow maybe because he does not have any muscle on his left arm, I don’t see on his left arm…
In other word, I’m hoping that he might still have some muscle on his right hand… Although, his right thumb which used to move a little now move at all. I was having a slight hope though…

There are many people who lost a most of their muscle strength but they always have somewhere to move (feel hand) and doing a blog.
I’m hoping that Hajime’s muscle also do not loose for all and at least to move somewhere.

Since last night, three of our family (Dad, Ryo and Yuki) went to Vandenberg Air Force Base at Lompoc. Today, they go into AFB and see a spacecraft call NuSTAR, which my husband is making. It is planned to launch next month.

Hajime loved to go air force base but this time he could not go. I told him that they when to the base and he looked so sad. He was crying. I’m sure he wanted to go.
It is heartbreaking that we cannot go out with Hajime anymore. Of course, I’m not giving up for a hope.
Let’s go out together, Hajime!

Translated by HM

Feb 26, 2012

Hajime, One Year Ago

Lately, when I have let myself give in to my feelings, I have not been able to hold back the flood of tears. I guess my mind is always filled with anxiety, fears, and worries. That is why I have not been able to think about anything else, and I feel like I am in a fog. But there are days when I am tired, and I come back to reality and cry and cry. These past few days, I have felt so sad that I almost can't breathe.

I am trying my best to be strong for Hajime and to look happy for him but I am human and sometimes I just have to cry. But Hajime will look at me as if to give me a warm hug. He really is a sweet child.

I have to try my best today too! For Hajime, for my family, for myself.....

As for Hajime's condition, it seems that his impatience with himself in not being able to stretch or bend his legs is making him frustrated. He often lets us know with his "call light" that he wants to bend his legs or stretch his legs, but now that he cannot move his legs like he wants to, he is even sadder than when he could no longer move his hands. Almost every day, he is challenging himself to play games, but it seems he is frustrated because he cannot push the buttons well.

Last night and tonight, the church youth group is putting on a dinner concert, Cabaret. Hajime's younger brother, Ryo, is in it, but one year ago, Hajime was in it too.

He was singing with so much life, like this. I told Hajime last night, "You know, Ryo went to Cabaret". He looked very sad. He "told" me, "I wanted to sing too!". When he sang last year, he was close to being unable to sing anymore, but even then he told me, "I want to sing a solo!" I wanted to let him sing.

When I look now at how Hajime's condition has progressed since then, I cannot stop crying and I feel really sad. But Hajime believes, "I am going to get better", so I have told him that he will be able to sing again one day. We have to hang in there! And I want to continue to watch over him.

(translated by MS)

Feb 24, 2012

A Taste He Remembers Fondly

The Taste That Brings Back Memories

The one and only joy in Hajime's life is juice! Of course Hajime cannot drink through his mouth so I have to give him drinks through his G-tube. Lately, I have been giving him juice more often, so one can is almost not enough.

Even yesterday, I was giving him a can of Squirt, little by little from the morning, but for the first time in a very long time he "said" that he wanted me to put some in his mouth too.

For a long time, Hajime has been scared to taste anything in his mouth, maybe because he was afraid to choke or didn't want to remember how things tasted, so (since he asked me) I put some juice in a little cup, soaked a sponge in it, and put it in his mouth.

The fact that he was able to drink and taste all of it made me very happy. Of course, he cannot swallow it so I had to suction it all back out.

When I asked Hajime, "Doesn't that bring back memories?", he blinked as if to say, "Yes". I am so happy when Hajime can experience even a little joy. For a healthy person, it is nothing, but for Hajime, this was a very big deal.

Now l'd like to tell you about our doggy.

Hajime's doggy got a haircut, so now he is this cute. His hair had been long, so we were surprised at how different he looked.

Like people who look different after a haircut, he looked like a different dog. He will have surgery next Monday and he will have stitches so it will take about 8 days for him to recuperate. So I think we will bring him home next, next week. He is a toy poodle, but the reason he looks so big is that his legs are very long.
This doggy is still just a puppy, 7 months old, but I hear his mother and father are groomed to be champion dogs.
So even if he is a puppy, he must be a very smart dog.

After he (finally) comes to our house, we may have a hard time housebreaking him, but we want to take the best care of him.

We are really looking forward to it.

Translated by MS

Feb 22, 2012

Many Tearful Days

For the past few days, Hajime has been crying a lot. Just this morning, he was crying because he couldn't play a game. Now, he can no longer play his favorite game called "Call of Duty". I think he was thinking, "I still wanted to play!"

Last night when he was watching his brother and sister play, he was crying. I think he really wanted to get up and move around, just as they were. Very few friends come to visit him anymore and unfortunately even the church youth group friends hardly come around.

But, even if they did come, he couldn't say anything to them. I think he would want to talk and laugh with his friends. I think it makes him really sad that he can't speak.

Right now it seems that he is really feeling lonely. I want him to always feel happy and content but...
If you can, please visit Hajime!

To change the subject, I don't know if he was just tired, but recently, Hajime was sleeping for days. His face was pale and cold...
I looked at Hajime and panicked. Is his heart working properly? Is it just the respirator keeping him alive? Is his body warm? I worried so much about these questions that I even did things like open his eyes. I was really scared. Of course, there was nothing wrong.

I guess we have been living with fear everyday. We have to trust God more and believe that, yes, Hajime will be alright.

Translated by MS

Feb 21, 2012

The Power of Friends

Last weekend, I left Hajime with my husband and went out with some friends for the first time in a long time. It was a good pick-me-up for me because I rarely get out of the house on weekdays.

I went to lunch with my good friends Shihomi-san and Ikurin. At night I went to a fancy place called Shunji with my new friends Toru-san, Kuraishi-san, Akemi-san, Yamaguchi-san, and also my friend Oriori. This is so blissful, I thought. I came home feeling quite content.

I had made Hajime feel a bit lonely but I think he is happy to be able to see me smile. So when I came home, I poured my love over him!

I am grateful to my husband for giving me this time. Thank you!

Now, about Hajime's doggy. We debated whether we should get a dog through a shelter or a breeder, but in the end we decided on a dog from a poodle breeder who our good friend, Joan, knows. We did go to the shelter with high hopes, but maybe because poodles are so popular, there already was a waiting list of people registered to adopt, so we gave up. I guess it is not a matter of first come first served when you're adopting.

But going to the shelter was a very good learning experience. Most of the dogs were shaking and looked lonely. When I go there, I feel so sad it hurts. I hope that they will all find a foster home soon.

This is a picture of the toy poodle we picked. His hair is a little long so we will have to cut it. He is a male, about 9 months old. He is a very gentle, quiet dog.

He will have to have surgery and such so he will not be coming to our house for about 3 weeks. We are looking forward to that. But, since he is still a puppy, the first thing we will have to take care of is his toilet training! We're going to have to work hard at that!

As soon as I showed Hajime this picture of the doggy, he shed a big tear. I think he must have felt something. I hope the doggy will be a good friend for Hajime.

Translated by MS

Feb 19, 2012

Origami club

Today, friends from high school Origami club brought 1000 paper cranes for Hajime.

It also comes with a message card and Hajime was reading with tears.

Sometime message says like “get well!” make him difficult feeling because he knows that his disease will not get well. But the message card he received today, there were more message like “come back school” or ”miss you” which will encourage him more. He could feel he is not alone.
Hajime always wishes to go back school so support from his friends really helps him. I was so happy.

Unfortunately, we could not let them see Hajime but hope to see you soon.

Thank you so much!

Translated by HM

Feb 18, 2012

Still no help from Medi-Cal

From this week, we decide to increase the time for the caregiver to 4 days a week. It is helping me a lot.

One thing it make me worry is Hajime don’t like her much. Hajime doesn’t like a person who hurt him when trying to do something or a person tries to do too much. She is really new so I told Hajime that she would learn as time passes. Always at the beginning, just making a communication is difficult. For me, make Hajime feel confortable is most important things.
Now, I’m worrying Hajime’s condition. His secretion’s color and odor is not so good again. Because we have not receiving enough gauze, we only able to change Hajime’s gauze every other days but our nurse helped us so that we can receive enough gauze to change every day.
We always receive such kind of less that what we needs but the palliative team is helping us a lot and advocate our needs.

We are having hard time to transfer the Medi-Cal. Yesterday finally we got a call from the caseworker and informed where we are.
Currently they are having trouble activating our Medi-Cal at LA County. Somehow it rejects their request by system.
I have no idea how long this goanna take to resolve. I can’t wait to have a nurse from Medi-cal but obviously it is not that easy…

Hajime was playing a game today. Ryo’s school was close so they were playing together.
Today’s weather is sunny and nice. It will be a nice calm day.

Translated by HM

Feb 16, 2012

Big love

Lately, Hajime has been playing games and watching TV from the morning. He was playing this game a lot.

I do not know how much longer he can play this game. I feel happy watching Hajime enjoy playing the game in his own way but I also wonder what he is thinking and feeling as he is playing and it pains me.

I am so proud of the way Hajime is trying to live his life to the fullest everyday. He is truly a strong child. I know it must all be so hard for him, but he still worries about me! Of course, everyone else in my family cares for me too.

Last night, I sat in a chair and I thought for a long time. I am truly blessed. I am surrounded by wonderful children and I have a husband who is always standing by me and taking care of me. Of course, Hajime has taught all of us so many things, and he has encouraged us and touched us with his gentleness. I think to myself, “Where in the world is there someone more blessed than I am?”

I know it is strange to say this, but when Hajime became sick, our lives changed completely. But it has not been all sad times. I can say that now we are happier than we have ever been and we know that we are not all alone. So many people have surrounded us with their love, cheered us on, and supported us. There is nothing as precious as love, is there? Each person’s love has led to a greater love and we have been blessed by it.

To all of you who are visiting my blog and cheering us on, I thank you so very much. Hajime is fighting everyday, comforted by the love we receive from all of you. Please continue to remember him.

Translated by MS

Feb 13, 2012

Conversation with my husband

Today I had a chance to talk with my husband about Hajime.
Recently, both of us were so busy on regular life, work and care and did not have time to just sit down and talk.
We are both so tired and we could not even care each other enough. Was not a good team to take care Hajime,,,,

We remember clearly the day. The day we come across to know about ALS and fear us it could be Hajime’s disease.

I remember we talked that whatever happen to Hajime, even become bedridden, we will take care him. It was around June 2010.
Now, he actually needs care 24/7.

We know how this disease progress but we always try to believe that for my son’s case, progress will stop.

I’m so sad my son’s case was so aggressive progression.

We talked about how fast it progressed and share about fears we have. It has been progressed so fast and does not seem to stop anywhere.
Hajime has a strong will of living and hope. We want to support such Hajime with every way.

We also talked about the great people who have helped us during this difficult time.
Some people left from us but always they are somebody whenever we need help.
We want to thanks to all of the people who have help us. We will continue our best support to make Hajime feel happy.

Translated by HM

Feb 11, 2012

Productive meeting

Hajime is watching cable TV this morning. I’m a bit relief while he is doing something. I’ll get so worry when he just laying in his bed and doing nothing. I feel what can I do for him….

Yesterday the palliative team came to our home and held a meeting for Hajime to improve his QOL.

A doctor, nurse, social worker and chaplain attend this meeting. We were so thankful to them to have a lengthy meeting for Hajime and our family.
Our fear, Hajime’s condition, his mental situation, and prognosis that always afraid to ask have been discussed.
We also talked about how it is getting difficult to have communication with him. Hajime was crying because he want to make more communication but he just can’t,,, Eye gaze system is very difficult to adjust and every time we move out from his sight and move back-in, it’s needs to proceed the alignment. Although only solution to solve this communication issue seem to be practice. I need to encourage him to practice.

For simple communication, my husband hand made a device for Hajime. This is prototype for next upgrade. I’m looking forward to see a new version.

My husband also made the one he is currently using to call us. Tapping his foot and will call us. It is useful and helping us a lot.
I never had a chance to write at this blog so I’ll put here a photo.

Hajime’s tiny skin break has been found. It is still stage 1. Because of this, he may need to be turn and off pressure every 2 hours at daytime.
He used to able to turn by himself so it was not a big issue but at this point with his muscle weakness, we need to help turn him. The pressure ulcer is a big problem so we have to keep eye on it.

The idea having a dog was also very positive from all. We are more serious looking for a dog. We decide to have toy poodle so now we have to find a best match to us.
Thank you so much for the information.

It was very busy day but was very productive day.

Feb 9, 2012


Hajime often writes this word with his foot.


He wants to be a child. No matter how old he is, he is my loving child.
I respond by touching his foot, and he responds back by rubbing my hand with his foot.

A happiest moment like this maybe taken away soon.
It makes me sigh and I can't think of anything.
I hope such a day will never come.

Hajime seems much calmer after a session with a social worker(Tracy).
He is enjoying a game today.
There are not so many people who can open up Hajime's feelings.
Hopefully we can continue sessions with Tracy.
It would be really wonderful if Hajime could feel better by expressing his feelings.

I feel sorry for not being able to stay right next to Hajime all the time.
I wish I could. It would be so great.

I just want to give him hope to live for.

(Translated by Yoko B.)

Feb 8, 2012

Prevent from catching a cold

Two days passed since Hajime’s grandma left. Hajime seemed a bit sad yesterday but Ryo was being with him to fill in a gap. Ryo understand Hajime very well.

Hajime’s secretion amount and odor increased so I’ve request whether we can start giving an antibiotics through nebulizer earlier than we planned. We got permission yesterday so I’ve started since last night. I hope this will help suppress secretion and prevent infections.

The day before yesterday, there is a small incidence to make me worry. Hajime told us that he feels ill with a slight fever.

Past few weeks, Ryo was sick and coughing all the time. Then my mother, sister and nephew got a cold as well. At the end, I’m having a sore throat too. Because of that, I worried that Hajime also might catch a cold. Nurse advised us if his fever become higher than 100F we would contact them and they will instruct us what should we do. I’m hopping nothing get serious.

Yesterday and this morning, he doesn’t have any fever so I’m soooo relieved.

About the dog, not much progress but few days ago, RT and social worker were at home and they were both positive having a poodle because they are hypoallergenic. Considering all my friends input, size, how smart etc,,, we are looking for a toy poodle now.
If anyone has any info about toy poodle, please let us know.

Translated by HM

Feb 6, 2012

Grandma return to Japan

Today, Hajime’s grandma took off to Japan.

Hajime had so many tears in his eyes. Grandma told Hajime “We will be back soon,,,”

Hajime will not able to go back Japan ever so have grandma here is happiest thing for him.
I am praying that grandma can come back soon.

Thank you, grandma, my sister and Yuta!

Translated by HM

Feb 4, 2012

Always consider how we feel

Hajime enjoy playing a new game Ryo bought. The triangle pillow really makes Hajime’s leg moveable and able to play game. I’m so happy. It is a miracle. Today, he also watched a movie “GOZIRA” through XBOX. Hajime loves GOZIRA.

Yesterday, homecare nurse, a bed bath helper, and a nurse from the palliative care team came.

Bed bathing is being smooth with a homecare nurse and Jaime’s cooperative work. Mostly, it depends how people get use to work with Hajime so I’m hoping homecare nurse won’t quit so quickly.

Palliative team nurse always thinks how Hajime and we feels.
Hajime don’t like to use suppository so I’m also having very hard time when I have to give it to him. She originally told us that we should give him as a routine but after feedback of how we are feeling about this, she told us let’s thinks for another options. She told us, we could use other medication but not a suppository type,,, or we could increase SENNA etc. She will discuss with a doctor about this matter.
The team always put their priority how Hajime feel best so unlike a regular hospital, they listen to us very well. I feel so fortune to have such a nice team.

Hajime is sick of seeing medical related person at this point but I’m hoping that Hajime can be more au naturel in front of them.
Next week, we will hold a meeting with whole team including a doctor. I’m hoping we can find a good plan during that time.

Translated by HM

Feb 2, 2012

Next plan

Triangle pillow is so powerful. Hajime restart to play a game, which once he has giving up.
Probably because of that, Hajime is doing well past few days.

I some time gave a juice through his G-tube. This will give joy to Hajime but not much of taste.
Few days ago, he said he want to taste it so I gave a little amount of juice to his mouth with an oral swab.
Before that, he never tries to taste it no matter what. Probably he had a fear choking but finally that day, he tried it!
I was so happy and asked Hajime “Taste good?” and he replied with a smile.

Next thing I am planning for him is to have a planetarium in his room. Project stars to the ceiling.
It is so boring just watching a white ceiling all the time so I asked Hajime about my idea and he seems to be on about it too.

It will be wonderful to have such a night sky in his room.
I’m researching which potable planetarium to have…

Translated by HM