Category 病院 (Hospital)
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?
Category リハビリ (Rehab)
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.
