May 31, 2011

To the Intensive Care Unit

To everybody who has been giving us all kinds of support, we truly want to thank you.

Hajime is in the Intensive Care Unit (ICU).

He is giving all of his effort to live.

Please pray for Hajime.

May 30, 2011

Tend to stay at home…

Even though Hajime is getting better, he is not as good as he goes out and he ended up in staying at home all the day because he cannot control saliva.   He did not go to the church today either.   Although I am hoping that he can recover quickly and go back to the church, it might be hard for him to stay and engage in the youth-group so long based on his current condition.    I am very sorry to see him not able to speak, not work and not eat…

Today, he used the suction-machine just like yesterday and removed saliva every few minutes.  Since this machine is not designed as mobile, he cannot bring with him when he goes out for shopping. So, it is troublesome that he cannot throw his saliva when he is out. This makes him rather stay at home…  It is not good for him to stay inside as being depressed though… 

Unfortunately, Botox did not work for him…  I wonder if there is anything else better to control his saliva…


(translated by YM & RM)

My wish is...

Today was the Memorial day, so we, the whole family went to the mall.
Well, it was in the evening, though.

From last week, his cold does not leave Hajime. We thought it might be
a good refreshment going out, so we encouraged him and went out.

But... not really good, it seemed like.

We walked around several shops, but Hajime was troubled controlling
his saliva and went to the washroom many times. We couldn't bring
suction machine either (it makes terrible noise, so using outside is
difficult). But maybe ALS patients should carry it around, in real. We
mind it maybe because we are Japanese...

Moreover...
He looked keeping his neck very hard, and leans onto his left side.
His left side must have a lot of burden with his neck weight because
his left arm also does not move either and already burdens on his left
side. Thus, it is better to put his weight on right side somehow, to
take balance. But it seems always he has accustomed to it, and cannot
shift his weight easily. So we thought we need attention when we walk
in the crowded people.

When we were in the mall, one thing we had.

Hajime cannot drink from his mouth though he became thirsty, he was
disappointed to it. But with using SMS, he told me "I wish I will be
able to drink again." So I was so glad knowing him not casting his
hope away... very much.

"Yes, let's trust in God!" I replied to him.

Recently, when he lays on the bed, he stretch his arms towards me.
When I take his hand, Hajime closes his eyes and shaking it. It makes
me realize that he has very tough and rough days everyday. Sometimes,
his eyes have tears, even...

I can only pray for him. I sometimes hate such a helpless my self.

God, please let his wish come true, please!


Translated by Satoko Okamoto

May 28, 2011

Hajime's smile seen after a while

Hajime was troubled by coughing a lot and could not get up from this morning.

His cold still stays in him and getting a lot of sputum, it seems
like. Of course controlling saliva is out of problem and it seems very
hard. Although using suction machine every 10 minutes, still he went
to the washroom many times.

In the end, Hajime could get up and came to living room sitting
together with family to spend his time in the evening.

At that time, Hajime was laughing with his voice, watching a Japanese
movie. Finally his smile appeared to his face being very frown
recently! My husband and I were so relived.

How much we are encouraged by Hajime's smile... we reassured.

Thanks!

Translated by Satoko Okamoto

May 27, 2011

Thank You for Such a Wonderful Article

Last night we had an incident in which Hajime’s nose started bleeding however, it was good that he was able to speak with his favorite Grandma through Skype.
And at night he didn’t cough as much and he fell asleep easily.

But this morning he wasn’t doing well from the start and at school he was sleeping in the health office.
He went to his class in the afternoon and he pulled through till the end.

Hajime truly has many wonderful buddies.
Danny Shapiro is one of them.














His mother, Joan told me that he had this wonderful article put on the school newspaper.














He even put a picture of Hajime when he was younger on there and I was extremely touched.














Danny's younger brother Joey doesn't know Hajime personally but he's the one who first said, "I want to donate to Hajime". His mother tried to give Joey money to do so, but Joey refused to accept that and instead took out from the allowances he saved.
And then Danny also donated his allowances to Hajime.
This isn't somethig that anybody can do.
It truly made me happy.
Hajime looked really happy as he read the article.

Joan, thank you very much!


Translated by Christine Shirota (American English)

May 26, 2011

A Lovely Book

Today, we sent a wheelchair borrowing free from another organization
to Hajime's School.

His school has wheelchairs for emergency but he was told it would be
good for him using the wheelchair when he moved among classrooms. So,
it was good timing. As the school has a caregiver, it will be no
problem moving around.

Last two days, Hajime was not really good condition. He had a lot of
sputum, and we worried for him. Yet, Hajime could go to school all day
today maybe because today he had a club and felt excited about it.

We were anxious about his breathing considering from yesterday. But we
were happy seeing him very well and cheerful today.

When Hajime came back to home, he embraced a book full of messages
from his friends. That was REALLY lovely book. Hajime handed to me
with his usual good smile showing happiness.

















Translated by Satoko Okamoto

May 25, 2011

His Condition is Worsening

Last night Hajime barely had any sleep. He had so much saliva and it was so hard to take care of. We vacuumed it out over and over again with the suction machine but it just kept coming out. What more is that he started having breathing problems and he couldn’t sleep because if it. He finally slept at a little past five o’clock in the morning.

For that reason, he didn’t go to school again.
He had a slight fever of a 99.4 too.

We had the first appointment at the Kaiser on Sunset, so we went. Afterwards, we met with the ALS clinic nurse.

As expected the nurse was very worried about Hajime’s breathing. To operate or not will be decided by Hajime and the social worker at the sessions. The nurse was especially concerned about the trip to Japan.

Regarding the timing of the tracheotomy, it might have been possible to do it a little later around August, but because we’d be in Japan at the time it is favorable to do it before we go to Japan.

Truthfully, I’m having problems reserving a flight also.

The BIPAP machine that we have to take is a plug in the socket type so we are told that we can’t take it into the plane with us… They are actually still in the process of asking. Or even if the main office permits it, because there are no sockets in Economy class, it wouldn’t work. For that reason it will be more costly.

And the main person, Hajime’s condition is very bad, and it was in these past 2 days that it has drastically changed. He really seems to be having a hard time constantly and because he’s so congested, he can’t even use the BIPAP machine.

This is much worse.
We may not be able to go to Japan anymore. Even if we plan the trip for an earlier date, if Hajime continues to be in this bad condition that he’s in, we can’t board the plane and leave.

The operation may not be an option right now, it maybe what’s absolutely necessarily right now already.


Translated by Christine Shirota

May 24, 2011

Have an operation before going to Japan...

This morning, I went to Hajime's school to recharge ENSURE and things.
But Hajime couldn't go today.

Because he felt breathing very difficult, we took an appointment to
the hospital and went to Kaiser's Pasadena.

He couldn't walk by his own from our car, and used wheelchair for
examination. Hajime was not well from the beginning to the end, and
complained about his sore throat.

I was afraid of him being pneumonia, that's why immediately I decided
to go to the hospital. Luckily enough, Hajime was not having pneumonia
and have no strange sound from his lung. I felt so happy for this
result...

Back home with nothing was wrong, Hajime was calm relatively. He slept
very tight after that, and we were relieved...

However we got a call from ALS doctor in the afternoon telling us that
he would have to have an operation for tracheotomy. This suggestion
was made because the doctor of Pasadena informed to ALS doctor about
Hajime's condition.

My son's condition is that dangerous now.

Yet,decision for taking the operation or not will be up to Hajime
himself. So he will have a discussion with a social worker. My husband
and I will have a talk with a nurse in advance.

Breathing ability is the high priority. So, hospital staffs take this
situation more serious than we consider, it sounded.

In whatever case, I will try to do my best for tomorrow's discussion
with a nurse.


Translated by Satoko Okamoto

May 23, 2011

A Cold?

Today, a morning after the weekend, he seemed to be doing pretty badly as usual. His stomach hurts and his stool is soft. Is it a cold? Is it because the new nutrition is too strong for him? Either way, I’m worried.

Lately, especially because he doesn’t have as much will power to go to school, he can’t get back to his usual self. But we pushed him to go. If he just goes, there’s a helper with him so he’s able to stay at school the whole day.

Just as expected, he stuck it out the whole day again. But, after he got home, he’s now complaining of a sore throat. This really might be a cold….

He seemed to be having a hard time breathing too, so I asked, “Are you having a tough time breathing?” He replied with a hand gesture, “A little,” but lately he really seems to be having difficulty breathing. I am worried about his breathing.

I’m trying to reserve a flight too, but because we’re not getting an approval to take Hajime’s BIPAP machine(it’s not battery operated), we probably won’t be flying economy.

We’re worried about his breathing so there’s really nothing we can do, but. Waaahh, the cost is so high it’s giving me a headache.


Translated by Christine Shirota

May 22, 2011

Not quite feeling well...

Today, we had Youth Sunday at the church.
This is the event for Youth Group. The all the process of Sunday
Worship are done by Youth Group members.

Hajime vomitted from nostril before going to the church and had
stomachache maybe influenced by morning intake nutrition from the
tube. I dropped him off to the church, though he said he did not want
to attend. It troubled his little brother. But Hajime managed to stay
until the end.

The small change of his physical condition impact when he does not
feel like doing something at that time. So, physical condition may be
influenced by his feeling a lot, I thought.

In the afternoon, everyone went to beach because it was the Beach Day.
However Hajime could not join them. After the worship, though we had
G-tube in our car and tried Hajime to go, Hajime minded his saliva
secreted a lot and gave up going.

Although Hajime is prescribed a medicine to stop saliva, but it seems
not really working. I guess it taste terrible and Hajime avoid it as
much as possible.



Will Hajime have to give up Youth program more times?
When we think of that, it makes us sad.

Maybe this summer will be very significant for Hajime.


Translated by Satoko Okamoto

May 21, 2011

Feelings that Can’t Be Expressed By Words

Last night, Hajime was depressed beyond control. He used these words on his device to tell me.

“I’m really sad that I can’t eat or drink anything. :-(”

Of course he feels this way. We’re living our daily normal lives… We’re not forcefully trying to hide ourselves from Hajime, so we eat in the living room like how we always did. But… Hajime feels lonely so he comes next to us in the living room and he sits.

He smells the food and he hears our fun conversation. But, he can’t eat, nor can he join in on our conversation. I don’t think anybody can understand what sadness he has.

Today, we went to go watch a movie as a family. It was the movie that just started last week, “Pirates of the Caribbean”

We went because Hajime wanted to, but during the movie his saliva would not stop and it was difficult to deal with it. His younger brother was taking care of it….

We were surrounded by people eating popcorn and drinking soda… I wonder what Hajime was going through in a situation like that? I’m sure he had frustrations that he couldn’t let out.

What’s even more is that his new nutrition wasn’t settling well in his stomach and was giving him a stomach ache… It seemed like today was harder than it usually already is.

It would be good if he could talk to somebody about these different feelings that he has. I don’t know if it’s because he wishes to speak to somebody and have somebody listen to his own voice or what, but it seems difficult with the device.

It would be good if I have more room in my heart and have more time to calmly listen to Hajime’s feelings more….


Translated by Christine Shirota (American English)

May 20, 2011

School after a bit while

In this few days, Hajime was obviously exhausted and could not even go to the school. I have been anxious seeing him weakening day by day. Everyday I thought "Will Hajime alright today?"

But after he absented school a few days and took enough rest at home, Hajime became better enough to go to school after a little bit while.

And, he spent a day with a caregiver who was assigned from today. It seemed that person was very kind and tender, Hajime told me very smiley. He will be taken care by the caregiver everyday, so I hope it will be good for them to get along together.

Recently Hajime seems very difficult to breath. I am worried so much. These days, he has been getting used to BIPAP, and he can put it until morning. But, will it make him sleep well, because his breathing is weakened?

Oh, how should I schedule the trip to Japan...


Translated by Satoko Okamoto

May 19, 2011

UCLA ALS Clinic

Today we had an ALS clinic at UCLA. Last time was in February, so it’s been 3 months since our last examination here.



First, it was the speech therapist.

How much nutrition intake and what is his weight? The answer to that is …
3 times daily, 2 cans at a time (1 can amounts to 350~375 kcal). And his weight today was 98 lbs.

This is the new nutrition Neutren.



This has been our nutrition that we’ve been using. ENSURE Plus.




He did lose a little weight, but I think it’s because he’s vomited the new nutrition that didn’t sit well with him. But we received a large quantity of it shipped to our home, and since we can’t exchange it, we are going to have to use it little by little to get him used to it. SP said that it’s okay to do less at a time but more frequent. She then checked how the device is being used and it was over.


Next, the OT/PT came.

It started with a talk about Hajime’s collar and were recommended of a particular collar, “This one is good.” The Headmaster Collar. And she wrote a prescription for it also.



 Along with Hajime’s muscle strength declining and because of the heavy weight of his left arm, when he walks or sits, his left shoulder drops. Because of that it became a fixed posture and he’s starting to not be able to turn his head to the right. So we were told to put a tape on a rolled up towel or a bath towel under his left arm to lift it, at least while he’s sitting. If the left arm is raised, the neck will naturally be moved back in place.


Next it was an examination by the pulmonologist.

He used the usual machine to measure the breathing capacity as usual. Hajime was giving all his effort into inhaling and exhaling.

Last time, when he was measured it was 58%.
This time was very low, it was 27%.

He was measured 3 times, the first was 23%, second was 27% and the third was 22%. The amount of oxygen was 95%, and we were told that it’s fine as long as it’s over 90%. But he said that when we go to Japan it’s better to take an oxygen mask. He said there’s one that could be connected to the BIPAP machine, so I think I’m going to look for it.


Next it was the main doctor.

As expected, she was concerned about his breathing capacity and she brought up tracheotomy. The doctor recommended doing it before going to Japan. I guess she’s worried about complications that may arise while our stay in Japan. We thought, “The time has come”…and it broke our hearts. We are planning to go to Japan in July, and there’s still about a month and a half left. From the speed of the progression, it is definitely within the possible realm, and we, and of course Hajime are at a loss.

This time at the clinic, several apprehensive issues came up, so I’m thinking that I have to re think about the scheduling of our trip to Japan.

Hajime’s the one having the toughest time…but we were just stunned…
I’m thinking of having a deep long talk about what to do from now on.


Translated by Christine Shirota (American English)

May 18, 2011

The Dream came TRUE!

Hajime's dream will come true!

On 14th May, we met Mr. Millheiser at the first time, and we had
interview with Ms. Ryoko Nakamura, a reporter of Rafu Shimpo. This
article is posted on today, 18th May.














You can read them online.


Japanese

English


Until now, we had a lot of letter and donation from many people. I
cannot read those letters because my eyes are filled with tears... But
Hajime listened to me reading them with full of smiles!

His dream will come true... and now we are preparing for making it.
Special requests on board while the flight, arranging a hospital while
we are in Japan, joining National Health Insurance, applying to the
disables registration, and nutrition brining to Japan... More things
to go through, and we will do our best!

And, please pray for Hajime will stay better and not getting worse
because of the disease progress.

Hoping for the grateful miracles to happen!

Translated by Satoko Okamoto

Left School Early Because He Was Coughing

This morning, the coughing was bad and it seemed like Hajime was suffocating a little. Although he wasn’t in a perfect condition, I made him go to school.

It was raining and very cold so I was thinking, “I hope he doesn’t catch a cold,” as I took the suction machine to school.

But at around 10 o’clock the school called and told me to pick him up right away because his coughing is so bad that he can’t stay and study in class. So I went to go pick him up.

Yesterday, when we went to the hospital, we were told, “Don’t use the patch as long as there’s an inflammation behind his ear!” So we were taking a break from the patch. For that reason, his coughing increased as of last night. So today, instead of the patch we will do something new and use a different medication.

It’s a drop type of medication, where 1 to 2 drops are put under the tongue, and since Hajime can’t move his tongue on his own, I lifted his tongue and put the medication under it.

We used this medication in the morning too, but there were too much saliva already so we couldn’t immediately see the effect. And after we got home from school, we tried the medication again. This time it worked really well, and Hajime was able to sleep well.

At night he had a slight fever (99.86) and we thought about taking him to the hospital, but we decided to wait and see. He seems okay for now.

But lately, his exhaustion is becoming very noticeable. For the past few days Hajime hasn’t been able to go to school for the whole day. What’s happening a lot now is that when he goes, the school calls us right away, and we have to go pick him up and he ends up sleeping at home anyways. When I think about how it might be the effect of this disease progressing again…it worries me.

It would be great if he can go to school without much health problems and full of energy, but the school is getting sensitive so he gets sent home right away. It’s a bit of a drawback or a fly in the ointment, but I know it’s a difficult situation.

Starting from tomorrow, there’s going to be a One-on-One Caregiver for Hajime. The school called us. I hope this person will be of great help.

Anyways, I want him to get better ASAP!



Translated by Christine Shirota (American English)

May 17, 2011

Serious shoulder joint

At one of the CSS examination today, we heard about Hajime's shoulder joint.

It was told that already the gap between bones of his shoulder joint
was almost 1inch.

Usually when the gap is wide like this, it causes a lot of pain. This
is cured with an operation, but Hajime cannot take it. Now, Hajime
does not feel the pain that much. Yet he needs to use a sling to put
his arm in.

Now because he does not have muscle on his left shoulder and arm, and
what Hajime can do is just hang his arm loose. The weight of an arm is
actually greatly heavy. Because of the weight it makes gap between
bones of his shoulder.


Translated by Satoko Okamoto

Botox...

Today because we had CCS (California Children Service) appointment
from the morning, my husband and Hajime went there together.

Hajime had exams of OT/PT, this time.

Because posture of Hajime's neck became better, to keep his muscle
balance, Hajime no longer needs to put the neck corset anymore.

This time we had an instruction for how to lay down on and get up from the bed.

When he gets up or to lay down, put his right hand beside his head (or
the pillow), lay strength onto the hand, then slowly move, either
getting up or laying down. Because he still has strong legs, Hajime
was told it would be good turning around after he bends his legs.

The exam took around 2hours and came home around 10 AM.

From the afternoon, to have Botox treatment, Hajime went to Kaiser.
Officially, it is called Botulinum toxin tipe B.

Around 2spots on both sides of his ears, and another 2spots of left
and right sides of jaws, meaning 4spots he had injections. Though it
was a lot of pain, he stood up so firm. Those moments, Hajime held his
father's hand from his own strongly to bear the pain.

When I heard that, I was in tears... tears again.... Hajime was
looking at his father with his eyes saying "Dad, I am hanging on
it!... Just imagining this made me cry... why won't I?

This injection is to put botulinus bacillus in his muscle to be
paralyzed. This paralysis will inhibit secretion of saliva. It will
take around 2weeks to have enough effect, so we need a little bit more
patience. But we hope Hajime's saliva stops when we are in Japan.

Though Hajime spent a day without me today, it was good opportunity
for him to go out with his father. Seeing their interaction made me
smile, and it made me very very happy.

Translated by Satoko Okamoto

May 16, 2011

Everybody’s Letters

We received the letters from his friends in Japan.
The picture shown below is just a few of those.



When Hajime was in Japan we lived in a place called Asaka city. His school was Asaka 9th Elementary School. He spent his elementary school life till 5th grade there.

Many letters came from those classmates.

Everybody heard about Hajime’s disease and wrote those letters after thinking about what they could do for him.

Hajime must have been really happy because he had big smiles.

Of course! Because encouragements from friends are what make us most happy, right?

I’m so glad for him!

Translated by Christine Shirota (American English)

May 15, 2011

Our memorable place

Today, we went to our memorable place.














This is the memorial wall of Mr. Onizuka located at Onizuka St. in Little Tokyo.

We took a photo like we had done before.
Last time, our little daughter was not born yet.
... It was very strange feeling.


















In summer 2000, when we took the picture, we never imagined Hajime
would have a disease, ALS.

My eyes are filled with tears when I noticed Hajime's smile has not
been changed from the last time.

Translated by Satoko Okamoto

May 14, 2011

Vomit In the Morning

Today, I had a call from the school saying, “You need to pick him up right now!” I was startled.

Hajime threw up near the school gate. He vomited rather a large quantity and his clothes were soiled…..

They tried to call 911, but because Hajime rejected it, they called us instead. From now on, they told us that either my husband or I need to be able to pick him up immediately when the school calls.

He can’t eat right now because his throat muscle is too weak. And I was surprised that he was still able to throw up.  But this is quite dangerous because even if he’s able to throw up there’s a possibility that it might get stuck in his throat and make him choke. I am very worried about what may happen from now on.

I took Hajime home from school and had him rest. Hajime must have been really exhausted because he was knocked out,,, Maybe going to school is too much now, after all?

In the afternoon there was the IEP meeting and only my husband went. They discussed such things as “Maybe Hajime should cut back on his classes.” The “One on One Caregiver” that the school is trying to hire would be hard to keep because if he misses his class or leaves early that caregiver will also lose those hours of work. They also brought up homeschooling him.

This may be the last year that Hajime could go to school by himself. There’s a big possibility that we will home school him next year, every day….

But I’m hoping that he’d get to enjoy at least one more month of school life.

And so a mother thought.

These happenings that occur every day, but if it’s nothing big to matter too much,

If it’s nothing , it would be okay…

Translated by Christine Shirota

May 13, 2011

Doctors' appointment

Today, we had appointments with two doctors in the afternoon.

First one was with a psychological doctor.
Hajime has had depression a little since he became ALS, and taking
anti - depression.
Tablet medicine was changed to syrup type to take it from G-tube.
Now, it may effect well as he seems a bit better to some extent.
But the depression will last more because his disease progresses too fast...

The doctor told him how amazing he was, and he was a great guy, many times.
However he never saw the doctor's eyes and looked aside.
Since he became sick, appointment and meeting at hospitals must be too
difficult, I see.

After the appointment, Hajime met the speech therapist.
This time was for a training on "tobil", the speaking device. It has
too much function to remember...
However he must have practice more because in the near future, it will
be required.

While the both meeting, Hajime was driveling and was difficult not to.

The patch makes him having rush a lot.
Though putting ointment to make it better, it seems Hajime scratches
and takes the patches out.
I hope treatment to start soon for stopping driveling.
This treatment will start from next Monday, so little more patience to
be needed.

But... it is too sad seeing him cannot stop driveling by his own...

Translated by Satoko Okamoto

Difficult breathing

From last night, Hajime had labored breathing.

It must be related to his too much of drool.
Anyway, it sounded very difficult.
It seemed his inhaling could sound whistling.

I was afraid of my Hajime to be pneumonia.

His temperature was normal, but forehead was hotter a bit.
I could not stop worrying him and told him better not to go to the school.
But he insisted to go.

Today, he really wanted to go to the school because a club meeting for
supporting him was taken place.
Well, so I made him go because strong feeling of going to school must
be a good sign.

In this few days, after finishing G-tube at school, he has taken rest
at the school clinic not attending classes...

Maybe his body was screaming for help.
Many facts such as the muscle atrophy on his neck has been progressed,
and lost control of drool disabled many things made his breath
difficult, maybe...

Yet, Hajime seems better now and calm.
Hoping he can rest deeper...

I think I must be careful of him not to have fever.

Translated by Satoko Okamoto

Little Brother's feeling

Today, there was an accident.

Hajime's little brother pointed out his drool.

"Bro, won't you stop dripping your drool onto the floor?"

Hajime was so upset and came to tell me because he cannot talk.
He made a lot of effort to explained what happened and his feeling
with a device.

For him, it was the worst thing he was afraid of pointed out, and he
did not do it on purpose, even he did not like it.
Yet he knew he couldn't help it, and felt so sorry and sad about it.

His little brother talked to me in tears.

"Mum and dad has to take care of my lil sis.
Big bro is sick.
So, where shall I be?"

Oh dear, this little man was so so stressed out.
So many things were in his small heart...

Hajime does not need to have full care yet and he can manage himself a lot.
But family started to be tired gradually.
Though everyone concerns and feels for Hajime very hard.

Well, but this is what we have to go through NOW.
So, I think of having a frank family talk.

The person who has the most anxiety is Hajime.
I have to protect our favorite smiles of Hajime...

Translated by Satoko Okamoto

May 12, 2011

Increasing saliva

All day today, he was troubled by driveling.
Last night, I heard him coughing a lot.

The patch to control drool is not effective as it was... sadly.
And moreover, because of its strength, the rush appeared around it
does not go away.
This makes me being hesitated to put it... though I want to.

If I do not put it, Hajime cannot stop drool.
But putting it still gave him certain amount of it.

Sigh....

So, the suction machine is inevitable.
Yet it is really troubling us to take it to the school because it is big.
Oh, I really hope there are some smaller and easier one to carry around.

It seems Hajime feels difficult to breath because of drool even after
coming back from the school.
The breathing is the big factor making me very anxious.

So, I really hope he will get used to BIPAP as soon as possible.

Translated by Satoko Okamoto

I will be on USTREAM!

Today, there will be a program on USTREAM.
The title is" Wealthy Life TV", and this is by my precious friend.

At 8PM 11th May (Wed), WST, 12th May (Thu) 12:30 PM.

This program is hosted by Mr. Hiroshi Mimura and Etsuko Tsukagoshi on
every Wednesday.
It is very rich in contents and very easy to understand, and my favorite.

This time, I will join as a guest to talk about Hajime.
Well, I will join them through Skype, though.
Oh my, I am nervous even now!

Please watch it if you can!

......... and, finished it!
This is the archive of today's program.



Translated by Satoko Okamoto

May 11, 2011

Exhaustion of the afternoon

From today, immediately Hajime went to school with the neck corset.
He went with smiles, and no sign of dislike the corset.
Phew, I am relived!














However, I wonder if this corset can support him further because his
neck muscle is weakened a lot.
Maybe better to have wider one...? Oh, it must be very hard
supporting his neck.

In this few days, his exhaustion is more visible than before.
I have heard that he took rest at the school clinic all day today
after lunch time G-tube.
Yesterday was the same...

Maybe because he has not been able to sleep a lot, I guess.
Yet this muscle atrophy also could be the reason for his exhaustion.

I told him going to bed earlier to have more rest from today.
But alas, he's still a teenager, meaning, he goes to bed late!

Oh son, go to bed NOW!

Translated by Satoko Okamoto.

May 10, 2011

Various Limitations

Today, I received a call from the school nurse.
Last week, during G-tube at school, Hajime choked and vomited a large amount of saliva. And from tomorrow, we now need to take the suction machine to school every day.
Before the G-tube, they are going to remove the saliva before the G-tube. This is the result of the school nurse talking directly to the hospital nurse.
The suction machine is very heavy and it is not a weight that Hajime can carry. So we have to deliver it to the school nurse every day. The nurse told us that she will talk to the school if they can purchase it or not.
When we talked to the hospital nurse, we asked whether there are any other good medications, and were told that the patch works the best and if that doesn’t work there are no other good medications. But, there is an operation that is done in the mouth to minimize the saliva for 3 months…so it seems like that maybe what we’re going to do.
And also, it’s too exhausting for Hajime to stay at school the entire day…so they are thinking of shortening the time he spends at school. They said they will hold an IEP meeting to decide about that.
Whether to shorten the time at school or to change to home schooling, it’s a tough decision to make.
And, it became mandatory that Hajime wears his neck collar (neck brace to hold his neck up) to school starting from tomorrow. There’s no chair to help hold his head up, even at school, so to be in that state for the entire day is just too much. They decided upon that after considering the risk that he might suffocate or tear a ligament.
Hajime has been worrying about that. Wearing a collar to school means that he’ll be standing out amongst the other students…and he really doesn’t want that.
Do this! Do that! As there are more requirements and limitations at school, it seems that Hajime feels like he’s suffocating. The school side is making their decision based upon prioritizing safety first.
I worry about Hajime’s feelings.

Translated by Christine Shirota

May 9, 2011

Happy Mother’s Day!

Today, I received a very beautiful mother’s day card.


I was touched by everybody’s word for word.
Out of it all, Hajime’s message made me happy the most.









He made great effort and used his right hand that has weakened so much… Even though the shaking is pretty bad…









I was so happy.
When I thought of how hard it must’ve been to write, tears started to well up and I couldn’t say a word.

Hajime looked like he was having a difficult time today too.
The “Neck Muscle Weakening” has been noticeable from last Thursday. He seems to get very tired even when he’s at home.

Out of it, for a few days, I’ve been concerned about when he switches his sides during sleep. He can’t flip over and turn his head along with his body.

He puts his right hand behind his neck and he shifts his head himself. When I think about his current condition,

I’m thinking, “Shouldn’t I take him to Japan as soon as possible?”
I wish that Hajime’s wish will come true by everybody’s great support as soon as possible!

Translated by Christine Shirota.

May 8, 2011

Dark road

Last night, Hajime and I had a conversation up on the patio.


It’s been a while since we last talked….well, our talk consists of Hajime using his iPad.
Hajime is always smiling and has a very peaceful expression.
But inside his heart, he is walking a very dark road.

The saddest thing right now is that he can’t eat.
Of course it is, he sits next to his family having meals and he tries
not to see us.
Inside he really wants to eat a lot.


My husband took my son to grocery shopping for mother’s day, but Hajime did not want to go.
It’s because he didn’t want to be there when he can’t eat any food. That was the reason.

It dawned on me then. I thought, because he’s so calm we are being spoiled by his calmness.
I thought, Hajime is always groping, feeling his way and walking through this dark road and tears started to fall.

So I asked the opposite, what do you enjoy the most?

What do you enjoy? “I don’t know”, that’s the answer that I got.
When I asked him,

“What about going out with your friends?”
“There are lots of things that I can’t do, but I really don’t like people seeing me drooling.”
That’s what he said.

Lately, he does have a lot of saliva, strangers that do not know Hajime has a startled look when they see him like that. Those stares, I assume, are what’s hurting his heart.

Right now, he can’t even feel the happiness of living…

Something to bring him happiness, could I find such a thing for him?
So a mother gives thought.

Translated by Christine Shirota.

May 7, 2011

Causing a rash


A patch behind his year to hold off his saliva…


It works really well so it helps us a lot, but
I found it’s causing a rash today

I thought that it must be a pretty strong patch.
But it doesn’t seem to itch or hurt him though.

Translated by Christine Shirota

His Love For His Father

video
 First, please see how Hajime is doing today.

For some days now, he’s been spending his days in beautiful smiles.
Hajime is well aware of and taking in everybody’s support.
I truly feel that it’s because of everybody’s cooperation and I am deeply grateful for it.
Thank you.

It is very difficult to understand his speech right now, but it brings me to tears watching him trying so hard to talk to his father.

It’s ironic that Hajime had a difficult time conversing or communicating with his father, but now their relationship is turning for the better. He’s shining very brightly when he shows his love for his father.

To see them like this forever! That is my wish.

Translated by Christine Shirota

Thank you Ms. Nakamura!

We received the Rafu Shimpo newspaper today.

The article was wonderfully written in both English and Japanese.
We are grateful for Yoshiko Nakamura who wrote this article.
We are also grateful that Yoshiko Nakamura gave us this opportunity.















Translated by Christine Shirota.

May 6, 2011

4th ALS Clinic

Today we had our fourth ALS clinic.
First he had his Speech Therapy.
He lost two pounds again from last time and was 100 pounds.
They said his calorie intake is too low with his current nutrition intake…so from now on we were told to use 6 cans of ENSURE Plus a day.
And up until now we were buying the cans ourselves, but DME should supply us with ENSURE…is the information that’s been given to us so I think I will ask about it.
Next, there were some people to evaluate his breathing ability and they measured Hajime’s breathing. There’s a mouth piece that’s used for this procedure but it seemed like Hajime was having a difficult time because he didn’t have enough strength to hold that mouth piece in his mouth. And this lady that always comes to measure his breathing left, looking a little sad.
Next, a social worker came that was not our usual social worker.
Our social worker that usually comes didn’t try to help us at all. I don’t know if it’s because of our cultural differences or what. But the social worker that came today was very concerned about our mental being and I felt like I was being healed just by talking to her. Even about the Make a Wish Foundation, she said that because he’s been diagnosed at the age of 17, it might be okay so she’s going to inquire for us.
Wonderful!
Next, the Pulmonologist came.
The doctor was very concerned about Hajime’s weight, and he explained to us that if he gains more weight, he may have more strength in his lungs and slow down the progression. And he also said to always use the BIPAP machine at night. If we can’t get used to using it, it’ll be good to practice using it during daytime…is what he said.
He was also concerned about his saliva. Hajime has a lot of saliva and that saliva enters his throat and he coughs from it. He coughs often during the night and when we asked he told us to use the suction machine and get the saliva out.

If he coughs more from the saliva when we use the BIPAP, he needs to have his throat cut open to have a tracheotomy done. I’m actually praying that this will be done at a much, much later time.
But the thing that shocked me the most was about his breathing capacity. We measured his breathing for the first time in November of last year. It was 70% out of 100% then. The next time was in January and it was 60%. This time when we measured it, they said it’s only 30%. Even considering the fact that he doesn’t have the muscles to close his mouth, 30% is a number that is much too low. That worries me very much and it’s heartbreaking at the same time.

And we also asked about boarding the plane to go to Japan, as is his wish to do so. The plane to go to Japan will not be a problem, but he told us that we must take the BIPAP machine with us. And he’s also concerned about colds and influenza, so we must take a lot of precaution. Because developing pneumonia will be ver troublesome…..
Next it was OT/PT. (Occupational therapy / Physical therapy)
They asked about progress,  we answered the usual questions and they examined Hajime’s muscle strength.

This time, the weakening of his neck muscle stood out, and Hajime had his head down the whole time of examination. It seems to be that it wears him out.

We were told…. that it’s better to have the neck collar on as much as possible. She also said that it might be better for him to wear it during sleep too.
His leg muscle is as strong as the last time they were examines. I am truly grateful for this.
But we live on the second floor and when he uses the stairs to go down I have been concerned about some instability so I asked about that. This, when he falls is very dangerous, so it’s better for him to hold onto the railings as much as possible when he come down the stairs…is what was said.

Then it was the main doctor’s examination.
First we asked about traveling to Japan. We need to take some liquids such as ENSURE on board as carry on, but we don’t know how to get past the security…is what we said. About that, the doctor said, ENSURE must be carried on so I will write the necessary documents to hand it to them…is what she said.
And I heard yet another shocking thing. In probably about 4 to 5 months Hajime’s throat will be cut open…It was so straight forward that I almost started to cry. I wanted that to happen as late as possible, so I was quite overwhelmed.
…..which is what I wrote, but I guess I understood the English incorrectly. What was said was that for Hajime, from now on, the thing that we must be careful about the most is for him not to be suffocated. If he has any breathing complications within these 4 to 5 months, the worst case scenario would be to cut him open right then and there, so please be prepared….
From now on, just like this we have to think about what may happen and prepare our hearts. And about that, honestly, it’s very distressful and painful.

Hajime was listening to everything from the beginning to the end in smiles, but as parents, my husband and I had very complicated emotions.
Lastly, we had a blood test and urine test done and we left the hospital.
It was a very bitter and painful clinic.

Translated by Christine Shirota

May 5, 2011

We Were Published On Rafu Shimpo

The article that we were interviewed by writer, Ms. Nakamura at a previous date has been published today, on this fourth of May.

You can read the article on the website too.

Japanese

English

Please help us so that everybody reads the article and let as many people know.

I am praying that Hajime’s dream will come true.

Translated by Christine Shirota

Hajime’s Fund

I would like to thank the many people that are supporting Hajime.

Today on Rafu Shimpo, a Japanese Newspaper that is published in Los Angeles, has an article published about Hajime.

My son is using everybody’s encouragement as his source of energy and is giving his best.

I sincerely thank you. Thank you very, very much.

This Hajime fund will be used for things such as his medical expenses, things that he’d like to do while he can still move, the stay in Japan, traveling fees.

Please support and help us.

How to donate from Japan

How to donate from USA

Translated by Christine Shirota

May 4, 2011

Long Overdue Haircut

It’s been awhile since my children got their hair cut. But it’s finally done. Their hair grew a lot so now they look very nice and fresh.














But…

It seemed hard for Hajime, whose neck muscles have been weakening, to sit on a chair without anything to lean on. It seems like he can’t support his neck, so he put his hands in other places to keep his balance.

Even while I was cutting his hair, depending on the angle of how I cut his hair, his neck would just PLOP down suddenly, and that made me think… the haircut will be harder and harder to do.

How do you think I should cut his hair from now on?

Translated by Christine Shirota

The Clamp That Loosens

Today I taught how to use the G-tube to the nurse at his high school. I got the documents to have the nurse do it from the doctor, so the nurse can finally do it at school.

We’re taking the case of Ensure ($29 for 30 cans)that we bought at Costco, syringe, cup and water and we’re starting from tomorrow.

About 5 years ago, there were only the type of G-tube where you drop(drip) it in and it took some time, but now a syringe can be used, so it takes less time and is better.

But lately, there’s a certain part that’s concerning and worrying me. The clamp on the G-tube is loosening quite a bit. This is a very crucial part so I worry about what they’re going to do when it loosens even more.











I heard that there’s a thing called the Lopez Valve, so I think I’m going to ask this Thursday at the ALS clinic.

How are the people in Japan doing this?

Is it the same type of tube?

Translated by Christine Shirota

May 3, 2011

Parking Place Card

I finally went to AAA today.

I got the disability place card.

I’m relieved that I finally got the paperwork that I’ve been procrastinating done.












I was told, “It seems like this card gets stolen frequently so don’t leave it lying around when you’re getting a car wash or something!”

I must be careful!

Translated by Christine Shirota

May 2, 2011

I Want to See the Stars

We went to San Diego as a family from Friday. It is indeed settling and calming in that little time that we go out as a family.

And on Saturday, we went to a friend’s house. Everybody in our family is so touched by my friend who welcomes us every time. They truly are a kind family.

After we left our friend’s house, I saw the night sky that was filled with stars. It was a very beautiful star studded sky.



Our family said “Wow it’s so beautiful!” with excitement in our voices.

But Hajime couldn’t look up and he looked sad. “If my neck muscle didn’t weaken, I could see this beautiful sky…”

I noticed Hajime, so I supported his neck, held his head and turned his face toward the night sky.


We were reminded again of how blessed we are, to be able to do the daily things that we take for granted.

The happiness from being able to see the night sky.

I want to show him much, much more stars.

Translated by Christine Shirota

Mom, I Feel like I’m Going to Faint.

Today was the day of Communion at church.

Hajime went to church as usual and wore a robe to worship service. Service started and right when it was about to end he started trying to tell us that something was wrong.

He said, “I want to talk to Mom and Dad”…and he didn’t want anybody else to hear.

But we couldn’t understand what he was saying at all. We couldn’t pick up his words. Hajime held his head and had his eyes closed. I was almost able to feel his pain and frustration through seeing him trying to hold his frustrations back.

He was frantically trying to text us with his cell phone, but because he’s not used to it, he kept on entering and deleting, entering and deleting and all he could get out was,

“Mom, I feel like I’m going to faint.”

He was able to tell us just this short sentence.

Because Hajime hasn’t been sleeping enough, it seems that he’s exhausted to his limit.

So, he couldn’t serve at the church communion, he rested in the car, and when we got home he slept the whole day.

Hajime is rejecting using the device. Is this one way he’s denying that he has this disease?

Translated by Christine Shirota (American English)