
先日発表された小保方さんのSTAP細胞の研究成果。
About the recent news on STAP Cells invented by Dr. Obokata.
細胞を酸性の液体につけると初期化され万能細胞に生まれ変わるという発見はとてもシンプルで、彼女の発想力に感銘を受ける。
I was impressed by her simple but elegant findings that cells can become any organ after being put in an acid bath.
山中教授のiPS細胞と共に今後、再生医療へ応用され、Leoの病気の根本治療法の発見への期待が膨らむ。
My expectations naturally go up together with the iPS cell research by Prof. Yamanaka, and I cannot help but hope for further advancement of regenerative medicine and the establishment of final treatment for Leo's symptoms.
でも、それ以上に今回嬉しいのは、この発見が、今自分たちが進んでいる道が正しいという確信をより深めてくれたことだ。
But what's more hopeful for us is these findings deepen our confidence on the direction we are heading toward.
それはひとえに、細胞が本来持つ力を信じるということ。
It is to believe in the power that cells innately have.
今回の研究成果は、環境からの刺激で細胞が変わることを示している。
The findings this time indicate that cells can change themselves by stimulus from surrounding environment.
そして今自分たちが実践しているのは、食事療法や糖鎖などのサプリメントによって、Leoの体内の有害な化学物質などの毒を排出して細胞をキレイにし、細胞が本来持つ力を最大限に引き出す環境を整えてやることだ。
And what we are focusing on right now is to clean bad chemicals from Leo's cells through food and glycan therapy, and prepare the best environment for the cells to maximize their innate healing power.
環境が整えば、Leoの体の細胞一つ一つが本来の治癒力を発揮し、正常な機能を取り戻す。
Once the environment is ready, we believe the cells heal themselves and recover the normal functions.
実際、非常にゆっくりだが、今までには見られなかったプラスの変化が見えてきたし、症状の悪化も下げ止まったようにも思う。
In fact, we have been slowly seeing the positive changes that we had never seen before, and the overall symptoms seem to have stopped getting worse.
我々も研究研究の毎日。
For us also, it is research and research everyday.
もちろん、小保方さんほど専門的でもないし、そういう研究機器もない。
Of course, we are not a specialist like Dr. Obokata, and we do not have research tools either.
でも、Leoの身体については自分たちが一番知っていると自負してる。
But we are the specialist on Leo's body and his symptoms.
日々のLeoの状態をママと報告し合い、Leoに良さそうなものを、片っ端から試し、症状が改善したか悪化したかを記録、比較し、今後の生活方針を決めていく。
Everyday, my wife and I report his conditions to each other, try anything that looks good for him, record if it improves or degrades the symptoms, compare the results, and decide what to do next.
毎日がその繰り返し。
It is a simple repetition of this cycle everyday.
でも、やっと希望の光が見えてきた。
But we have finally started seeing the light of hope.
そして、その光は今回の発表でより強くなった。
And the light got stronger with the findings this time.
また、前に進めそうだ。
So great news to move forward.
About the recent news on STAP Cells invented by Dr. Obokata.
細胞を酸性の液体につけると初期化され万能細胞に生まれ変わるという発見はとてもシンプルで、彼女の発想力に感銘を受ける。
I was impressed by her simple but elegant findings that cells can become any organ after being put in an acid bath.
山中教授のiPS細胞と共に今後、再生医療へ応用され、Leoの病気の根本治療法の発見への期待が膨らむ。
My expectations naturally go up together with the iPS cell research by Prof. Yamanaka, and I cannot help but hope for further advancement of regenerative medicine and the establishment of final treatment for Leo's symptoms.
でも、それ以上に今回嬉しいのは、この発見が、今自分たちが進んでいる道が正しいという確信をより深めてくれたことだ。
But what's more hopeful for us is these findings deepen our confidence on the direction we are heading toward.
それはひとえに、細胞が本来持つ力を信じるということ。
It is to believe in the power that cells innately have.
今回の研究成果は、環境からの刺激で細胞が変わることを示している。
The findings this time indicate that cells can change themselves by stimulus from surrounding environment.
そして今自分たちが実践しているのは、食事療法や糖鎖などのサプリメントによって、Leoの体内の有害な化学物質などの毒を排出して細胞をキレイにし、細胞が本来持つ力を最大限に引き出す環境を整えてやることだ。
And what we are focusing on right now is to clean bad chemicals from Leo's cells through food and glycan therapy, and prepare the best environment for the cells to maximize their innate healing power.
環境が整えば、Leoの体の細胞一つ一つが本来の治癒力を発揮し、正常な機能を取り戻す。
Once the environment is ready, we believe the cells heal themselves and recover the normal functions.
実際、非常にゆっくりだが、今までには見られなかったプラスの変化が見えてきたし、症状の悪化も下げ止まったようにも思う。
In fact, we have been slowly seeing the positive changes that we had never seen before, and the overall symptoms seem to have stopped getting worse.
我々も研究研究の毎日。
For us also, it is research and research everyday.
もちろん、小保方さんほど専門的でもないし、そういう研究機器もない。
Of course, we are not a specialist like Dr. Obokata, and we do not have research tools either.
でも、Leoの身体については自分たちが一番知っていると自負してる。
But we are the specialist on Leo's body and his symptoms.
日々のLeoの状態をママと報告し合い、Leoに良さそうなものを、片っ端から試し、症状が改善したか悪化したかを記録、比較し、今後の生活方針を決めていく。
Everyday, my wife and I report his conditions to each other, try anything that looks good for him, record if it improves or degrades the symptoms, compare the results, and decide what to do next.
毎日がその繰り返し。
It is a simple repetition of this cycle everyday.
でも、やっと希望の光が見えてきた。
But we have finally started seeing the light of hope.
そして、その光は今回の発表でより強くなった。
And the light got stronger with the findings this time.
また、前に進めそうだ。
So great news to move forward.


Leoはスポーツニュースの野球のコーナーが大好き。
Leo likes to watch sports news, especially baseball parts.
それがテレビに映ると、「ぼーー」と叫ぶ。ベースボールと言ってるんだろう。
When it is on TV, he says "Bow", meaning baseball, probably.
とにかく好きなので、野球のオモチャでリハビリしてみた。
He likes it so much that we practiced with a baseball toy for hitting. Good rehab tool!
オモチャについてくるバットは太すぎて持てないので、細いプラスチックの棒で練習。
The plastic bat that comes with the toy is too big for him to hold, so we used a thinner one.
細かい動きの練習にもいい。
It is a good exercise for fine motor skills.
ただこの日はなんだか疲れてて体がグニャグニャ。上手く立てなかったね。
Unfortunately, he was too tired today, so his trunk was very loose and could not keep standing well.
まあ、いろいろ試していこう。
Well, let's try various things.
楽しく遊びながらリハビリしていこうね、Leo(^^
Having fun is the most important thing in rehab, right? Leo?
Leo likes to watch sports news, especially baseball parts.
それがテレビに映ると、「ぼーー」と叫ぶ。ベースボールと言ってるんだろう。
When it is on TV, he says "Bow", meaning baseball, probably.
とにかく好きなので、野球のオモチャでリハビリしてみた。
He likes it so much that we practiced with a baseball toy for hitting. Good rehab tool!
オモチャについてくるバットは太すぎて持てないので、細いプラスチックの棒で練習。
The plastic bat that comes with the toy is too big for him to hold, so we used a thinner one.
細かい動きの練習にもいい。
It is a good exercise for fine motor skills.
ただこの日はなんだか疲れてて体がグニャグニャ。上手く立てなかったね。
Unfortunately, he was too tired today, so his trunk was very loose and could not keep standing well.
まあ、いろいろ試していこう。
Well, let's try various things.
楽しく遊びながらリハビリしていこうね、Leo(^^
Having fun is the most important thing in rehab, right? Leo?

糖鎖サプリをはじめて2ヶ月。
2 months have passed since Leo started taking glycan supplements.
Leoの体調の変化を記録しておこうと思う。
So time to record the changes observed.
まあ、他にもいろいろやっているので、一概に糖鎖によるもととは言えないけど、ここ2ヶ月の変化を中心に記録してみたい。
He's doing other things also, so it is kind of hard to classify them, but I will focus on the changes seemingly coming from glycan here.
まず、この先不適切な表現等ございますので、今食事中の方は読むのをご遠慮ください(笑
First of all, below contains descriptions inappropriate for viewers in supper, so it is recommended to read them some other time :-)
では早速。
Ok, then let's start.
1. 便の質が変わる
1. Change in stool
便秘は相変わらず。以前よりマシにはなったが、3日に一回出ればいい方。なかなか解消しない。
Constipation continues. It's become a bit better, but once every 3 days is the norm.
しかし、便の質は目に見えて明らか。
However, the characteristics of stool has obviously changed.
以前は
Before,
- 1発目は硬式テニスボール(より硬いかも)。
The first one is like a tennis ball (harder than that, I guess)
- 出始めるまで10分以上かかる(そりゃそうだ)
Takes 10+ minutes to start (understandable with that size...)
- 2発目以降は硬いゴルフボールを数個ほど。
The second and a few after that are like golf balls.
- 全然出きってない
So not completely out.
- 出し方は、顔が真っ赤になるくらいいきむ
He tries to push them out so hard that his face is all red...
- 1発目で大概切れる
So the first big one makes it breed...
- だから痛くて、便座にも座りたくない感じ
And makes him feel pain, so he does not want to even stay sitting
- 結果、便秘はさらに悪化の悪循環
As a result, his constipation goes worse in bad cycle
でも、今は
However, now
- 1発目は硬いズッキーニ。長くて太い!
The first one is like zucchini. Big and long!
- 座って2,3分で出る。
Takes just 2-3 minutes to get the first one out
- 2発目以降も長くて太くて程よい硬さのが4,5本。結構ビックリする量。
4-5 ones after the first are also a decent size and softness. The quantity is quite a lot.
- 出るときは出きっている。
Seems like he manages to push all out
- 出し方は出始めればあまり気張らずスルりと出る
No need to try hard as they come out smoothly
- 1発目で切れない
So it does not breed even with the first one
- だから、そこまで便座に座るのも嫌じゃない感じ
So he does not dislike sitting on the toilet any more
- 結果、以前よりは便秘ではない
As a result, his constipation is better.
まあ、改善しているといえばしているかな?
So overall, it is improving, I guess...
もうちょっと頻度を上げていこうね、Leo。
Let's make it more frequent little by little, Leo?
2.左脚の動きがスムースになる
Movement of left leg has become smoother
顕著に観察できるのはつっぱってる左脚の動きの変化。
It is obvious that the way his left leg moves has changed.
以前は
Before,
- 左脚はいつもピーンと突っ張っている
His left leg is so spastic and straight to the toe
- 歩くときに膝が曲がらない
And the left knee does not bend when walking (with support)
- つま先IN、つま先OUT
Toe lands first
- つま先立ち状態で体重が乗らない
So he cannot put his weight on the tiptoed left leg
- 結果、脚の出がいろんな方向にいって歩けない
Therefore, both legs go in various direction while walking
- それを矯正するためにブレースを使用
So braces are used to correct it
しかし、今は
But, now
- つっぱりが少し解消
His spastic left leg is a bit less spastic
- 歩くときにヒザが最初に出る!
His knee bends first while walking
- かかとIN,つま先OUT
The heel lands first, not the toe
- しっかり体重が乗っている
Can tell his weight is on the left leg more appropriately
- 脚の出がスムース
The movement of left leg is smoother
- 故にブレースはあまり使用してない
Therefore, we use braces less often
動きのスムースさに関して言えば、手先、指先、口の動きが少しスムースになる。
When it comes to smoothness, the movement of hand, fingers, and mouth are smoother.
以前はつかめなかったものがつかめたり、もてないものがもてたり、言えない音が言えたり。
He can grab things that he could not. He can hold things that he could not. He can make sounds that he had hard time producing with his mouth.
もちろん、糖鎖のおかげと一概には言えなくて、半年前からずっとカイロに行っているので、その効果が出てきたのかも?
Of course, it is not all coming from glycan and I am sure that there is a good effect from the chiropractic care we started half a year ago.
どちらにしても、以前は体全体がどんどん突っ張っていく一方だったから、今までにない変化で非常にうれしい。
In any case, his body parts were getting spastic everywhere before, so the changes we see are those that we had never seen in the past, so we are happy about it.
支える我々の負担も少し軽くなった。それもうれしい。
His weight on our hands has become lighter, which is also good.
時計の針を戻していこう…
Let's rewind the clock...
時間はかかるかもしれないけど、
even though it may take a while to do so...
あせらず、ゆっくりと…
No rush, and let's go slowly...
這い這いできたときに…
back to the days when you were crawling...
一人で立てたときに…
back to the days when you were standing by yourself...
そして
and lastly,
一緒に歩けたときに…
let's go back to the days we could walk together, right? Let?
2 months have passed since Leo started taking glycan supplements.
Leoの体調の変化を記録しておこうと思う。
So time to record the changes observed.
まあ、他にもいろいろやっているので、一概に糖鎖によるもととは言えないけど、ここ2ヶ月の変化を中心に記録してみたい。
He's doing other things also, so it is kind of hard to classify them, but I will focus on the changes seemingly coming from glycan here.
まず、この先不適切な表現等ございますので、今食事中の方は読むのをご遠慮ください(笑
First of all, below contains descriptions inappropriate for viewers in supper, so it is recommended to read them some other time :-)
では早速。
Ok, then let's start.
1. 便の質が変わる
1. Change in stool
便秘は相変わらず。以前よりマシにはなったが、3日に一回出ればいい方。なかなか解消しない。
Constipation continues. It's become a bit better, but once every 3 days is the norm.
しかし、便の質は目に見えて明らか。
However, the characteristics of stool has obviously changed.
以前は
Before,
- 1発目は硬式テニスボール(より硬いかも)。
The first one is like a tennis ball (harder than that, I guess)
- 出始めるまで10分以上かかる(そりゃそうだ)
Takes 10+ minutes to start (understandable with that size...)
- 2発目以降は硬いゴルフボールを数個ほど。
The second and a few after that are like golf balls.
- 全然出きってない
So not completely out.
- 出し方は、顔が真っ赤になるくらいいきむ
He tries to push them out so hard that his face is all red...
- 1発目で大概切れる
So the first big one makes it breed...
- だから痛くて、便座にも座りたくない感じ
And makes him feel pain, so he does not want to even stay sitting
- 結果、便秘はさらに悪化の悪循環
As a result, his constipation goes worse in bad cycle
でも、今は
However, now
- 1発目は硬いズッキーニ。長くて太い!
The first one is like zucchini. Big and long!
- 座って2,3分で出る。
Takes just 2-3 minutes to get the first one out
- 2発目以降も長くて太くて程よい硬さのが4,5本。結構ビックリする量。
4-5 ones after the first are also a decent size and softness. The quantity is quite a lot.
- 出るときは出きっている。
Seems like he manages to push all out
- 出し方は出始めればあまり気張らずスルりと出る
No need to try hard as they come out smoothly
- 1発目で切れない
So it does not breed even with the first one
- だから、そこまで便座に座るのも嫌じゃない感じ
So he does not dislike sitting on the toilet any more
- 結果、以前よりは便秘ではない
As a result, his constipation is better.
まあ、改善しているといえばしているかな?
So overall, it is improving, I guess...
もうちょっと頻度を上げていこうね、Leo。
Let's make it more frequent little by little, Leo?
2.左脚の動きがスムースになる
Movement of left leg has become smoother
顕著に観察できるのはつっぱってる左脚の動きの変化。
It is obvious that the way his left leg moves has changed.
以前は
Before,
- 左脚はいつもピーンと突っ張っている
His left leg is so spastic and straight to the toe
- 歩くときに膝が曲がらない
And the left knee does not bend when walking (with support)
- つま先IN、つま先OUT
Toe lands first
- つま先立ち状態で体重が乗らない
So he cannot put his weight on the tiptoed left leg
- 結果、脚の出がいろんな方向にいって歩けない
Therefore, both legs go in various direction while walking
- それを矯正するためにブレースを使用
So braces are used to correct it
しかし、今は
But, now
- つっぱりが少し解消
His spastic left leg is a bit less spastic
- 歩くときにヒザが最初に出る!
His knee bends first while walking
- かかとIN,つま先OUT
The heel lands first, not the toe
- しっかり体重が乗っている
Can tell his weight is on the left leg more appropriately
- 脚の出がスムース
The movement of left leg is smoother
- 故にブレースはあまり使用してない
Therefore, we use braces less often
動きのスムースさに関して言えば、手先、指先、口の動きが少しスムースになる。
When it comes to smoothness, the movement of hand, fingers, and mouth are smoother.
以前はつかめなかったものがつかめたり、もてないものがもてたり、言えない音が言えたり。
He can grab things that he could not. He can hold things that he could not. He can make sounds that he had hard time producing with his mouth.
もちろん、糖鎖のおかげと一概には言えなくて、半年前からずっとカイロに行っているので、その効果が出てきたのかも?
Of course, it is not all coming from glycan and I am sure that there is a good effect from the chiropractic care we started half a year ago.
どちらにしても、以前は体全体がどんどん突っ張っていく一方だったから、今までにない変化で非常にうれしい。
In any case, his body parts were getting spastic everywhere before, so the changes we see are those that we had never seen in the past, so we are happy about it.
支える我々の負担も少し軽くなった。それもうれしい。
His weight on our hands has become lighter, which is also good.
時計の針を戻していこう…
Let's rewind the clock...
時間はかかるかもしれないけど、
even though it may take a while to do so...
あせらず、ゆっくりと…
No rush, and let's go slowly...
這い這いできたときに…
back to the days when you were crawling...
一人で立てたときに…
back to the days when you were standing by yourself...
From iphone_pics_030512 |
そして
and lastly,
一緒に歩けたときに…
let's go back to the days we could walk together, right? Let?
From Nov |
From Nov |

大分遅れたが、先週末にLeoとSenaの七五三の写真を撮ってきた。
It was supposed to happen in last November, but we just had our Shichi-Go-San photo event last week.
出来上がりは3週間後ということで、自分たちで撮った写真を少しばかり。
The actual pictures come out in 3 weeks, so I list here some pictures we took by our camera.
Leoに着物を着せるのは一苦労だったけど、何とか。
It was kind of tough to put KIMONO on Leo, but we managed that together.
でも暑いのか、終始嫌がってたかな…
He did not like it maybe because it felt hot to him.
Senaも怖かったのか、かなりの作り笑い(^^)。
Sena looked scared, so her smile looked very unnatural:-)
家族写真もLeoはずっとSenaの髪飾りが気になって気になって…
And the family pictures, finally. Leo was distracted by the big flower on Sena's hair.
いい写真撮れているんだろうか?結構心配…
We are worried if there are any good family photos with this...
まあ、そんなこんなで、七五三の写真撮影はドタバタと終了。
Anyway, our first Shichi-Go-San photo event went so fast.
LeoもSenaも緊張したのか、家に帰ってから即昼寝(^^
I guess it was a tense experience for Leo and Sena. They fell asleep right after we got home.
まあ、二人ともがんばったぞ!
Ok, guys! Well done!
こういう節目節目の昔の写真を見ると、正直、今は落ち込むときが多い。
To be honest, when we look at the old pictures of Leo, we often feel down...
Leoが歩いてたり、走っていた写真とか…昔といっても、たった3年前…
The pictures when Leo was walking and running... It is just 3 years ago...
でも、これからは、こういう節目節目の写真を後から見ても、「この頃はこんなんだったね、でも今は…」と笑顔で言えるように、信じる道を進んでいこうね。
But you know what? We can see the path toward hope now, so let's move forward so that we can see the old pictures and say with a smile "I remember those bad days, but now it is ..."
Leo、Sena。
Leo, Sena.
これからもよろしくね。
Let's hang in there together!
It was supposed to happen in last November, but we just had our Shichi-Go-San photo event last week.
出来上がりは3週間後ということで、自分たちで撮った写真を少しばかり。
The actual pictures come out in 3 weeks, so I list here some pictures we took by our camera.
Leoに着物を着せるのは一苦労だったけど、何とか。
It was kind of tough to put KIMONO on Leo, but we managed that together.
でも暑いのか、終始嫌がってたかな…
He did not like it maybe because it felt hot to him.
From 7-5-3 Pics |
From 7-5-3 Pics |
From 7-5-3 Pics |
Senaも怖かったのか、かなりの作り笑い(^^)。
Sena looked scared, so her smile looked very unnatural:-)
From 7-5-3 Pics |
From 7-5-3 Pics |
From 7-5-3 Pics |
From 7-5-3 Pics |
家族写真もLeoはずっとSenaの髪飾りが気になって気になって…
And the family pictures, finally. Leo was distracted by the big flower on Sena's hair.
いい写真撮れているんだろうか?結構心配…
We are worried if there are any good family photos with this...
From 7-5-3 Pics |
まあ、そんなこんなで、七五三の写真撮影はドタバタと終了。
Anyway, our first Shichi-Go-San photo event went so fast.
LeoもSenaも緊張したのか、家に帰ってから即昼寝(^^
I guess it was a tense experience for Leo and Sena. They fell asleep right after we got home.
まあ、二人ともがんばったぞ!
Ok, guys! Well done!
こういう節目節目の昔の写真を見ると、正直、今は落ち込むときが多い。
To be honest, when we look at the old pictures of Leo, we often feel down...
Leoが歩いてたり、走っていた写真とか…昔といっても、たった3年前…
The pictures when Leo was walking and running... It is just 3 years ago...
でも、これからは、こういう節目節目の写真を後から見ても、「この頃はこんなんだったね、でも今は…」と笑顔で言えるように、信じる道を進んでいこうね。
But you know what? We can see the path toward hope now, so let's move forward so that we can see the old pictures and say with a smile "I remember those bad days, but now it is ..."
Leo、Sena。
Leo, Sena.
これからもよろしくね。
Let's hang in there together!

待つこと3ヶ月半。
Waited for 3 months and a half...
やっと全エクソム解析の結果が!
Finally the results of Whole Exome Sequencing came out!

病院から電話がかかってきたとき、すぐに結果が出たんだと分かる。
I knew immediately after I got the call from the hospital.
興奮して電話に出る。
I picked up the phone, very excited.
でも、電話の向こうにいる先生の声のトーンで、すぐ結果が分かる。
But I could immediately tell from the tone of the voice that the results were not good.
結論から言えば、何も確定的には分からなかったとの事…
To say the conclusion first, they did not find any solid genetic cause...
少しでも何か分かればと期待していただけに、結構ショック…
I was very disappointed since I had hoped we could find something new... even a little bit...
ほぼ最後の砦だっただけに、動揺が隠し切れない…
I could not stay calm since it was almost our last resort to find it out...
正直、もう聞きたくなかった文章だったな…
To be honest, I did not want to hear the same sentence again...
「何の問題もなし」
"Nothing wrong"
聞きなれた文だけど、これほど残酷に聞こえたときは無かった。
I know I am used to hearing it, but it sounded the most cruel as ever this time.
「原因不明」
"Cause Unknown"
この言葉とこれからも付き合っていかなければいけないうこと…か…
Looks like we still need to keep this phrase again with us...
うん、うん、うん。
Well, well, well...
でも、それで良しとしようじゃないか!
I'll just accept it as a fact!
逆に言えば、最先端の技術をもってしても、遺伝子的に何の問題も見つけられなかったということなんだから。
In other words, after all those advanced gene sequencing, they did not find anything wrong genetically, so...
プラスに、プラスに。
let's take it positively.
検査結果がLeoの症状を改善するわけではないしね。
The results of the sequencing do not improve Leo's symptoms anyway.
こんな風に考えれるのも、今自分たちがやっていることが、正しい方向に向かっていると感じられるから。
I can think this positive since I feel like what we have been doing is going in the right direction.
残念だったけど、忍耐強く、一緒に前に進んでいこう!
The results were disappointing, but this kind of stuff happens every once in a while, so let's move forward!
な、Leo?
OK, Leo?
Waited for 3 months and a half...
やっと全エクソム解析の結果が!
Finally the results of Whole Exome Sequencing came out!

病院から電話がかかってきたとき、すぐに結果が出たんだと分かる。
I knew immediately after I got the call from the hospital.
興奮して電話に出る。
I picked up the phone, very excited.
でも、電話の向こうにいる先生の声のトーンで、すぐ結果が分かる。
But I could immediately tell from the tone of the voice that the results were not good.
結論から言えば、何も確定的には分からなかったとの事…
To say the conclusion first, they did not find any solid genetic cause...
少しでも何か分かればと期待していただけに、結構ショック…
I was very disappointed since I had hoped we could find something new... even a little bit...
ほぼ最後の砦だっただけに、動揺が隠し切れない…
I could not stay calm since it was almost our last resort to find it out...
正直、もう聞きたくなかった文章だったな…
To be honest, I did not want to hear the same sentence again...
「何の問題もなし」
"Nothing wrong"
聞きなれた文だけど、これほど残酷に聞こえたときは無かった。
I know I am used to hearing it, but it sounded the most cruel as ever this time.
「原因不明」
"Cause Unknown"
この言葉とこれからも付き合っていかなければいけないうこと…か…
Looks like we still need to keep this phrase again with us...
うん、うん、うん。
Well, well, well...
でも、それで良しとしようじゃないか!
I'll just accept it as a fact!
逆に言えば、最先端の技術をもってしても、遺伝子的に何の問題も見つけられなかったということなんだから。
In other words, after all those advanced gene sequencing, they did not find anything wrong genetically, so...
プラスに、プラスに。
let's take it positively.
検査結果がLeoの症状を改善するわけではないしね。
The results of the sequencing do not improve Leo's symptoms anyway.
こんな風に考えれるのも、今自分たちがやっていることが、正しい方向に向かっていると感じられるから。
I can think this positive since I feel like what we have been doing is going in the right direction.
残念だったけど、忍耐強く、一緒に前に進んでいこう!
The results were disappointing, but this kind of stuff happens every once in a while, so let's move forward!
な、Leo?
OK, Leo?


昨日のことなのだが、Leo、お灸を初体験。
Yestearday, Leo experienced moxibustion for the first time in his life.
お友達の人に家でしてもらいました。
It was done by our friend at our home.
といっても、もぐさを盛ってやる、いわゆるお灸のイメージではなく、こんな感じ。
But it was not a typical moxibustion with moxa directly on the skin, but rather like this.

お線香よりちょっと太いくらいのスティック状に固めたものを、ペン状のアルミケースに入れて皮膚の上をなぞるようにするタイプ。
It is a stick type put inside an aluminum pen-looking case and goes on the skin.
いきなりだとLeoも怖がると思い、見本として最初に自分にしてもらった。
We thought it would scare Leo, so I did it first.
慢性の腰痛持ちなので、腰を中心に背中、肩、首まで。
I have a chronic lower back pain, so it went over the back, neck and shoulders.
お灸というよりは、温熱ツボ刺激マッサージといった感じ。
It does not feel like a moxibustion but rather acupuncture with warmed sticks.
これが、まあ、気持ちいいこと、気持ちいいこと。
So it was so good and relaxing.
自分の場合は、右首筋から右肩にかけて、えらく気持ちいいな~なんて思ってたら、隣で見ていたママが、そこが赤くなるのを発見。
I was feeling very good when the sticks were going over the right-side of the neck and the right shoulder. Then my wife found that those areas became red.
どうやら、痛かったり、こっているところ、悪いところが赤くなるみたい。
It looks like the bad, painful, or stiff parts become like that.
たぶん、血の流れが悪いところなんだろう。温まって血の流れが改善したのかも?
Probably it shows the parts where blood circulation is not good, but the warm sticks improved it.
びっくりするくらいにスッキリ。
It felt just so good!
これは神経系が上手く働いてないLeoに効きそうだな~と期待しながら、いよいよ彼の番。
I expected it must work well for Leo since his symptoms are mostly neurological, so I was looking forward to his turn.
最初は嫌がってたけど、だんだん気持ちよくなってきたみたい。
Of course he did not like it first, but looked like he started feeling good and ...
背中、腰、首、足の裏、突っ張っている左脚や、脚の付け根など、一通りやってもらっている間にそのままZzzzz。
he just fell asleep while it went all over the body including the back, lower back, feet, spastic left leg and its connection to the pelvis areas.
そして、左膝が赤くなるのを確認。
And we confirmed that his left knee became red.
やっぱり左脚が突っ張ってねじれてるから、左膝に負担が来ているのかも…
Well, his left leg is always spastic and twisted, so too much weight is on it.
それにしても、その悪いところ、痛いところを教えてくれるだけでも、親としてはうれしい限り。
But it is quite surprising that it shows the bad parts of our body, which is very valuable information for us, parents.
抱えて2階のベッドに下ろすときに、今まで聞いたことがないくらいにLeoの背中の節がポキポキポキとなった。
I took him to his bed upstairs and when I put him there, many popping sound came from his back.
筋肉と神経の凝りが取れて、溜まった背中の歪みが抜けたのが分かった。
I knew immediately that they came from his spine thanks to the relaxed muscle and nerves with significantly less stiffness and twist.
珍しく万歳して寝てるのも、背中が調子がいいときに見られる姿勢。
He was sleeping with his arms up, which is the sign seen when his spine is straight.
そして、明けて今日の朝。
And this morning...
いつも起きたLeoをトイレに支えて連れて行くんだが、持った瞬間に違いが!
I could immediately tell as soon as I held him up to the bathroom.
見違えるくらい体に芯が入ってて、筋肉のトーンもいつもと違って少し張りがある。
His trunk is a lot stronger than yesterday and the muscle tone is obviously different and looks better.
左脚のツッパリも少し改善。声も良く出るし、表情もハッキリしてる。
His left leg is less spastic. He can utter clearer and his face looks shiny.
そして何より、Leo自身がうれしそう。
And the best of all is he himself looks happy.
それを見て我々にも少し希望が…
A little hope has arrived to us again.
今度日本に行った時に即入手決定です(^^
We will get those tools when we go back to Japan in April.
最近は、以前にもまして、いろんな人に支えられているのを感じる。
You know what? I feel like, a lot more than before, that we are supported by so many people.
真っ暗な闇の中にいた。
We were in the dark.
本当に暗く冷たい空間だった。
It was deep and cold.
そんなときに、自分たちの人生を変えるブログに出会った。
But we encountered the blog that changed our life.
病気に対する考え方や食事、生活にいたるまで、モノの見方が180度変わった。
It changed the way we think toward the disease. It changed the food we eat. It changed the way we live. It changed the way we look things 180 degrees.
心の支えを見つけた。
We finally found the hope.
年末には、お友達家族が遊びに来てくれたり、ユタの妹家族や、ロスにいるおばさんやいとこ、テキサスにいる元同僚からも温かい励ましの手紙と支援をいただいた。
During the holiday season, we had friends families stay with us, and also received warm words and gifts from my sister's family in Utah, aunt, uncle, and cousins in LA, and old ex-coworker in TX.
昨日もそう。
Yesterday was the same.
Leoのことを心配してくれて、友人がお灸をしてくれた。
Our friend worried about Leo and offered him the great moxibustion.
感謝してもし尽くせない。ただただ、ありがとうございます。
I cannot appreciate all of them enough. Thank you very much for your support!
皆に支えられながら、希望の光が見えてきた。
Thanks to that, we started seeing the light of hope.
少しずつだけど、確実に。
Maybe not strong for now, but definitely for sure.
Yestearday, Leo experienced moxibustion for the first time in his life.
お友達の人に家でしてもらいました。
It was done by our friend at our home.
といっても、もぐさを盛ってやる、いわゆるお灸のイメージではなく、こんな感じ。
But it was not a typical moxibustion with moxa directly on the skin, but rather like this.

お線香よりちょっと太いくらいのスティック状に固めたものを、ペン状のアルミケースに入れて皮膚の上をなぞるようにするタイプ。
It is a stick type put inside an aluminum pen-looking case and goes on the skin.
いきなりだとLeoも怖がると思い、見本として最初に自分にしてもらった。
We thought it would scare Leo, so I did it first.
慢性の腰痛持ちなので、腰を中心に背中、肩、首まで。
I have a chronic lower back pain, so it went over the back, neck and shoulders.
お灸というよりは、温熱ツボ刺激マッサージといった感じ。
It does not feel like a moxibustion but rather acupuncture with warmed sticks.
これが、まあ、気持ちいいこと、気持ちいいこと。
So it was so good and relaxing.
自分の場合は、右首筋から右肩にかけて、えらく気持ちいいな~なんて思ってたら、隣で見ていたママが、そこが赤くなるのを発見。
I was feeling very good when the sticks were going over the right-side of the neck and the right shoulder. Then my wife found that those areas became red.
どうやら、痛かったり、こっているところ、悪いところが赤くなるみたい。
It looks like the bad, painful, or stiff parts become like that.
たぶん、血の流れが悪いところなんだろう。温まって血の流れが改善したのかも?
Probably it shows the parts where blood circulation is not good, but the warm sticks improved it.
びっくりするくらいにスッキリ。
It felt just so good!
これは神経系が上手く働いてないLeoに効きそうだな~と期待しながら、いよいよ彼の番。
I expected it must work well for Leo since his symptoms are mostly neurological, so I was looking forward to his turn.
最初は嫌がってたけど、だんだん気持ちよくなってきたみたい。
Of course he did not like it first, but looked like he started feeling good and ...
背中、腰、首、足の裏、突っ張っている左脚や、脚の付け根など、一通りやってもらっている間にそのままZzzzz。
he just fell asleep while it went all over the body including the back, lower back, feet, spastic left leg and its connection to the pelvis areas.
そして、左膝が赤くなるのを確認。
And we confirmed that his left knee became red.
やっぱり左脚が突っ張ってねじれてるから、左膝に負担が来ているのかも…
Well, his left leg is always spastic and twisted, so too much weight is on it.
それにしても、その悪いところ、痛いところを教えてくれるだけでも、親としてはうれしい限り。
But it is quite surprising that it shows the bad parts of our body, which is very valuable information for us, parents.
抱えて2階のベッドに下ろすときに、今まで聞いたことがないくらいにLeoの背中の節がポキポキポキとなった。
I took him to his bed upstairs and when I put him there, many popping sound came from his back.
筋肉と神経の凝りが取れて、溜まった背中の歪みが抜けたのが分かった。
I knew immediately that they came from his spine thanks to the relaxed muscle and nerves with significantly less stiffness and twist.
珍しく万歳して寝てるのも、背中が調子がいいときに見られる姿勢。
He was sleeping with his arms up, which is the sign seen when his spine is straight.
そして、明けて今日の朝。
And this morning...
いつも起きたLeoをトイレに支えて連れて行くんだが、持った瞬間に違いが!
I could immediately tell as soon as I held him up to the bathroom.
見違えるくらい体に芯が入ってて、筋肉のトーンもいつもと違って少し張りがある。
His trunk is a lot stronger than yesterday and the muscle tone is obviously different and looks better.
左脚のツッパリも少し改善。声も良く出るし、表情もハッキリしてる。
His left leg is less spastic. He can utter clearer and his face looks shiny.
そして何より、Leo自身がうれしそう。
And the best of all is he himself looks happy.
それを見て我々にも少し希望が…
A little hope has arrived to us again.
今度日本に行った時に即入手決定です(^^
We will get those tools when we go back to Japan in April.
最近は、以前にもまして、いろんな人に支えられているのを感じる。
You know what? I feel like, a lot more than before, that we are supported by so many people.
真っ暗な闇の中にいた。
We were in the dark.
本当に暗く冷たい空間だった。
It was deep and cold.
そんなときに、自分たちの人生を変えるブログに出会った。
But we encountered the blog that changed our life.
病気に対する考え方や食事、生活にいたるまで、モノの見方が180度変わった。
It changed the way we think toward the disease. It changed the food we eat. It changed the way we live. It changed the way we look things 180 degrees.
心の支えを見つけた。
We finally found the hope.
年末には、お友達家族が遊びに来てくれたり、ユタの妹家族や、ロスにいるおばさんやいとこ、テキサスにいる元同僚からも温かい励ましの手紙と支援をいただいた。
During the holiday season, we had friends families stay with us, and also received warm words and gifts from my sister's family in Utah, aunt, uncle, and cousins in LA, and old ex-coworker in TX.
昨日もそう。
Yesterday was the same.
Leoのことを心配してくれて、友人がお灸をしてくれた。
Our friend worried about Leo and offered him the great moxibustion.
感謝してもし尽くせない。ただただ、ありがとうございます。
I cannot appreciate all of them enough. Thank you very much for your support!
皆に支えられながら、希望の光が見えてきた。
Thanks to that, we started seeing the light of hope.
少しずつだけど、確実に。
Maybe not strong for now, but definitely for sure.


Leo、今年初の病院。
Leo's first office visit this year.
今日は泌尿器科に行ってきた。(といっても私は仕事でママが連れて行ってくれたんだけど…)
Today was Urology (I was at work, so my wife took him there)
2歳のときから気にはなっていて、定期的に診てもらってたけど…
We had been worried about it and it had been checked periodically, but ...
左の玉玉ちゃんが… 見当たらない…
His left ball seems missing ...
一昨年、昨年までは、「まあ、その内降りてくるでしょう」と、親の心配をよそに専門医はかる~い返事。
In the last two years, the urologists were saying "No worries. It will come down eventually."
でも今年は、「う~~ん。降りてこないから、手術ですね」と、またかる~い感じ…
But this year, they said "Well, not yet come down, so surgery is necessary now."
ちょ~~っと、ちょっと、ちょっと!
Wait, wait, wait!
しゅ、手術?
Surgery?
こんな大事なところを手術?
Surgery on that important part of the body?
そのことをママ経由で聞いて、あせる自分…
My wife told me what the doctors said... and I was scared at first...
でも、よく話を聞いてみると、よくあることらしい。
But then, when I listened what they said more carefully, I realized it is not a rare thing for little boys.
手術も一時間でちょちょっとですぐ帰れるとのこと。
The surgery itself will be done within an hour and he can go back home immediately.
ちょっと一安心。
So relieved...
降りてこないままだと、温かい体の中心部に近いところにあるから生殖的に玉玉ちゃんに悪く、また、あるべきところにないからガン化する可能性もあるとのことで、近いうちにスケジュールすることに…
They say it is not good for the ball to be close to the warmer part of the body for reproduction reason, and also it could become cancer if it continued staying at the wrong place.
So we are scheduling the surgery now.
左脚が神経的に突っ張ってるから、周りの筋肉も突っ張って引っ張っちゃうのか...
I guessed it may have been caused by the spastic left leg, which makes the surrounding muscle tense, ending up pulling and holding the ball there...
それとも、玉玉ちゃんが上にあって、痛いか気になって左脚が突っ張るのか。
Or the ball has been staying at a wrong place, making Leo feel pain or annoyed, and that's why his left leg is spastic...
おそらくは前者なんだろう…
I don't know which one is right, but probably the more likely reason is the former...
まあ、理由はどうであれ、また、全身麻酔…か…(涙
In any case, it requires a general anesthesia... again... :-(
もう何度したんだろう?
How many times has he had it already?
そしてまた体にメスを…
And how many times does he need to feel pain like this?
まだ5歳なのに…
He is still just 5 years old!
もう何度痛い思いをしたんだろう…
He has already gone through enough painful things...
また痛い思いをさせてしまうけど、ゴメンな、Leo...
I cannot help but feel sorry for Leo...
なんでLeoだけこんな大変な思いをしないといけないんだろうな…
How come does he need to always go through this...
神様は不公平だよな...ホント...
It is unfair, God... It really is...
できることなら、本当に変わってあげたい...
I wish I could go through this instead of him...
自分の体をLeoにあげたい...
I wish I could even give my body to him...
医学が進歩して、それができるのであれば、
If medical science advances further, allowing things happen,
迷いなくそれをしてあげたい…
then I would love to devote my body to him...
with no hesitation...
Leo's first office visit this year.
今日は泌尿器科に行ってきた。(といっても私は仕事でママが連れて行ってくれたんだけど…)
Today was Urology (I was at work, so my wife took him there)
2歳のときから気にはなっていて、定期的に診てもらってたけど…
We had been worried about it and it had been checked periodically, but ...
左の玉玉ちゃんが… 見当たらない…
His left ball seems missing ...
一昨年、昨年までは、「まあ、その内降りてくるでしょう」と、親の心配をよそに専門医はかる~い返事。
In the last two years, the urologists were saying "No worries. It will come down eventually."
でも今年は、「う~~ん。降りてこないから、手術ですね」と、またかる~い感じ…
But this year, they said "Well, not yet come down, so surgery is necessary now."
ちょ~~っと、ちょっと、ちょっと!
Wait, wait, wait!
しゅ、手術?
Surgery?
こんな大事なところを手術?
Surgery on that important part of the body?
そのことをママ経由で聞いて、あせる自分…
My wife told me what the doctors said... and I was scared at first...
でも、よく話を聞いてみると、よくあることらしい。
But then, when I listened what they said more carefully, I realized it is not a rare thing for little boys.
手術も一時間でちょちょっとですぐ帰れるとのこと。
The surgery itself will be done within an hour and he can go back home immediately.
ちょっと一安心。
So relieved...
降りてこないままだと、温かい体の中心部に近いところにあるから生殖的に玉玉ちゃんに悪く、また、あるべきところにないからガン化する可能性もあるとのことで、近いうちにスケジュールすることに…
They say it is not good for the ball to be close to the warmer part of the body for reproduction reason, and also it could become cancer if it continued staying at the wrong place.
So we are scheduling the surgery now.
左脚が神経的に突っ張ってるから、周りの筋肉も突っ張って引っ張っちゃうのか...
I guessed it may have been caused by the spastic left leg, which makes the surrounding muscle tense, ending up pulling and holding the ball there...
それとも、玉玉ちゃんが上にあって、痛いか気になって左脚が突っ張るのか。
Or the ball has been staying at a wrong place, making Leo feel pain or annoyed, and that's why his left leg is spastic...
おそらくは前者なんだろう…
I don't know which one is right, but probably the more likely reason is the former...
まあ、理由はどうであれ、また、全身麻酔…か…(涙
In any case, it requires a general anesthesia... again... :-(
もう何度したんだろう?
How many times has he had it already?
そしてまた体にメスを…
And how many times does he need to feel pain like this?
まだ5歳なのに…
He is still just 5 years old!
もう何度痛い思いをしたんだろう…
He has already gone through enough painful things...
また痛い思いをさせてしまうけど、ゴメンな、Leo...
I cannot help but feel sorry for Leo...
なんでLeoだけこんな大変な思いをしないといけないんだろうな…
How come does he need to always go through this...
神様は不公平だよな...ホント...
It is unfair, God... It really is...
できることなら、本当に変わってあげたい...
I wish I could go through this instead of him...
自分の体をLeoにあげたい...
I wish I could even give my body to him...
医学が進歩して、それができるのであれば、
If medical science advances further, allowing things happen,
迷いなくそれをしてあげたい…
then I would love to devote my body to him...
with no hesitation...
From One December Day @Pont Beach |

明けましておめでとうございます。(遅い!)
Happy New Year! (Too late?:-)
久しぶりの更新。1ヶ月ぶりかな?
It's been a month since the last post here.
クリスマスから年末にかけて、ブラジルとサンノゼからお友達の家族が2家族連続で泊まりにきてくれて、毎日とても賑やかにぎやか。
We had two families from Brazil and San Jose staying at our house during the Christmas holidays, so it was busy but a lot of fun!
シーワールドに行ったり、
It's San Diego, so Seaworld is a must to go.

ビーチで遊んだり、みんなで集まってクリスマスBBQパーティーしたり。
Also must is the beach and BBQ after that!
LeoもSenaも、ただ家にお友達がいるだけでたのしそう。
Leo and Sena looked very happy having friends at home.


そして間髪入れずに年越しカウントダウン+おせち持ち寄りパーティー。
And we had a New Year's Eve countdown potluck party.
LeoもSenaもたくさん遊んで疲れたみたいで、皆が帰ってからは、珍しく長く昼寝する毎日。
Seems like Leo and Sena had too much fun. They rarely take a long nap but they did after everyone went back.
私も元旦だけ休みで、年末の疲れがぬけるのに時間がかかったな~。歳か?(^^)
As for me, it is business as usual and unlike Japan, just New Year's Day is a holiday here. So it took more than I thought to recover from the fatigue from too much fun. Feeling like getting old...:-)
とにかく遅れましたが、明けましておめでとうございます。
Anyway, I know it is too late, but happy new year to you all from the Enoues!
今年もよろしくお願いします。
May your new year be a joyful and wonderful year!

Happy New Year! (Too late?:-)
久しぶりの更新。1ヶ月ぶりかな?
It's been a month since the last post here.
クリスマスから年末にかけて、ブラジルとサンノゼからお友達の家族が2家族連続で泊まりにきてくれて、毎日とても賑やかにぎやか。
We had two families from Brazil and San Jose staying at our house during the Christmas holidays, so it was busy but a lot of fun!
シーワールドに行ったり、
It's San Diego, so Seaworld is a must to go.
From Friends from Brazil, Dec. 2013 |
From Friends from Brazil, Dec. 2013 |

ビーチで遊んだり、みんなで集まってクリスマスBBQパーティーしたり。
Also must is the beach and BBQ after that!
From Friends from Brazil, Dec. 2013 |
From Friends from Brazil, Dec. 2013 |
From Friends from Brazil, Dec. 2013 |
LeoもSenaも、ただ家にお友達がいるだけでたのしそう。
Leo and Sena looked very happy having friends at home.


そして間髪入れずに年越しカウントダウン+おせち持ち寄りパーティー。
And we had a New Year's Eve countdown potluck party.
From New Year's Eve Party 2013 |
LeoもSenaもたくさん遊んで疲れたみたいで、皆が帰ってからは、珍しく長く昼寝する毎日。
Seems like Leo and Sena had too much fun. They rarely take a long nap but they did after everyone went back.
私も元旦だけ休みで、年末の疲れがぬけるのに時間がかかったな~。歳か?(^^)
As for me, it is business as usual and unlike Japan, just New Year's Day is a holiday here. So it took more than I thought to recover from the fatigue from too much fun. Feeling like getting old...:-)
とにかく遅れましたが、明けましておめでとうございます。
Anyway, I know it is too late, but happy new year to you all from the Enoues!
今年もよろしくお願いします。
May your new year be a joyful and wonderful year!
