Category つぶやき (Tweets)
結局また夜中の2時。
Well, it is 2 in the morning... again...
湯船に浸かってLeoの病気の原因について携帯で検索し始めたのが0時…
It was midnight when I started searching the web for Leo's symptoms in the bathtub.
さすがに2時間は入りすぎ(^-^)。反省…
Well 2 hours were just a bit too long...
今度受けるエクソーム解析についても検索していたら、一つまだ遺伝子検査をしていないけど、症状がピタリと当てはまる病気を発見。
I was also searching the information on whole exome sequencing and just found another disease that his symptoms fit well with.
病名はCharlevoix-Saguenay型常染色体劣性遺伝性痙性失調症。長いので英語の頭文字をとってARSACS(Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay)と言うらしい。
It is called ARSACS(Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay).
これも含め、今度のエクソーム解析で85%の既知の遺伝子疾患がわかる。
The exome sequencing we are having soon will reveal many including this one.
何か分かればいいけど。
And we strongly hope we find something.
期待70%。不安30%…
Feeling like 70% excited, 30% uneasy...
今までも様々な検査で期待を裏切られてきたから…
because we have been disappointed with too much expectation on the findings so far...
でも今回のは、今までの検査とは次元が違うからかなり期待大。
But this is different from all the tests we have done so far, so we are excited more than feeling uneasy.
とにかく原因が知りたいです。
We just want to know why.
神様、お願いします…
That's all, so God, please let us find the cause.
Well, it is 2 in the morning... again...
湯船に浸かってLeoの病気の原因について携帯で検索し始めたのが0時…
It was midnight when I started searching the web for Leo's symptoms in the bathtub.
さすがに2時間は入りすぎ(^-^)。反省…
Well 2 hours were just a bit too long...
今度受けるエクソーム解析についても検索していたら、一つまだ遺伝子検査をしていないけど、症状がピタリと当てはまる病気を発見。
I was also searching the information on whole exome sequencing and just found another disease that his symptoms fit well with.
病名はCharlevoix-Saguenay型常染色体劣性遺伝性痙性失調症。長いので英語の頭文字をとってARSACS(Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay)と言うらしい。
It is called ARSACS(Autosomal Recessive Spastic Ataxia of Charlevoix-Saguenay).
これも含め、今度のエクソーム解析で85%の既知の遺伝子疾患がわかる。
The exome sequencing we are having soon will reveal many including this one.
何か分かればいいけど。
And we strongly hope we find something.
期待70%。不安30%…
Feeling like 70% excited, 30% uneasy...
今までも様々な検査で期待を裏切られてきたから…
because we have been disappointed with too much expectation on the findings so far...
でも今回のは、今までの検査とは次元が違うからかなり期待大。
But this is different from all the tests we have done so far, so we are excited more than feeling uneasy.
とにかく原因が知りたいです。
We just want to know why.
神様、お願いします…
That's all, so God, please let us find the cause.
Category つぶやき (Tweets)
LeoがCFDではないことが分かったので、早速ブログのタイトルを変えた。
It turned out that Leo is not CFD, so I changed the title.
もっとLeoらしいタイトルに。
To something that features Leo.
彼のとびっきり笑顔が、いつでもどこでも周りの人を幸せにしてくれるから。
Because his beautiful smiles always make people happy anywhere anytime.
その笑顔にいつも救われているから。
Because his beautiful smiles give us a lot of strength in life...
It turned out that Leo is not CFD, so I changed the title.
もっとLeoらしいタイトルに。
To something that features Leo.
彼のとびっきり笑顔が、いつでもどこでも周りの人を幸せにしてくれるから。
Because his beautiful smiles always make people happy anywhere anytime.
その笑顔にいつも救われているから。
Because his beautiful smiles give us a lot of strength in life...
Category 病院 (Hospital)
今、神経科の先生から電話があった。
I just got a call from Leo's neurologist.
なんと、前記事の全エクソン配列解析を保険会社とLabが承認したとのこと。
He said the insurance company and the lab have approved the Whole Exome Sequencing for Leo!
まさか承認されるとは、先生も我々も思っていなかった。
None of us thought they would, so what a great news!
先生も電話の向こうで興奮していた。
The doctor sounded very excited about it on the phone.
こちらはほぼ半泣き…
And on my side, I was half crying...
$7000（70万円）の費用を全額だしてくれるみたい。
The cost (approx. $7000) will be paid by them.
初めて健康保険が保険らしいことをしてくれた。
I know that's what the insurance is for, but still I appreciate that they did the job!
ありがたい。本当にありがたい。
I cannot appreciate it enough.
先生にも感謝感謝！
And of course, thank you, doctor!
Leo!やったぞ！
Leo! We did it!
ついにここまで来た！
We have finally got here!
我々の血も採ってテキサスの研究所に送るみたい。
Our blood is also sent to the lab in Texas.
当然、我々が抱える因子も分かることになるし、間接的にSenaのも分かることになる。
This means we, as parents, will know what we have in our genome and indirectly know about what Sena has too.
もし何か因子を持っていたとしても、それを知りたいと昨日ママと二人で話したばかり。
My wife and I just talked about it last night. Even if we do have something, we agreed that we would like to know about it.
人生一度きり。
Life is just once.
そして最終地点は同じ。
The final goal is the same for everyone.
だから知りたい。
So we want to know about it,
残りの時間を有意義に過ごすために...
to live our remaining life better...
日々の生活で注意すべきことを明確にするために...
to live our life better knowing what to do or what not to do...
そして、もっと長くLeoと一緒にいるために...
And to live and continue to support Leo for much longer...
(c)Todd 2013
I just got a call from Leo's neurologist.
なんと、前記事の全エクソン配列解析を保険会社とLabが承認したとのこと。
He said the insurance company and the lab have approved the Whole Exome Sequencing for Leo!
まさか承認されるとは、先生も我々も思っていなかった。
None of us thought they would, so what a great news!
先生も電話の向こうで興奮していた。
The doctor sounded very excited about it on the phone.
こちらはほぼ半泣き…
And on my side, I was half crying...
$7000（70万円）の費用を全額だしてくれるみたい。
The cost (approx. $7000) will be paid by them.
初めて健康保険が保険らしいことをしてくれた。
I know that's what the insurance is for, but still I appreciate that they did the job!
ありがたい。本当にありがたい。
I cannot appreciate it enough.
先生にも感謝感謝！
And of course, thank you, doctor!
Leo!やったぞ！
Leo! We did it!
ついにここまで来た！
We have finally got here!
我々の血も採ってテキサスの研究所に送るみたい。
Our blood is also sent to the lab in Texas.
当然、我々が抱える因子も分かることになるし、間接的にSenaのも分かることになる。
This means we, as parents, will know what we have in our genome and indirectly know about what Sena has too.
もし何か因子を持っていたとしても、それを知りたいと昨日ママと二人で話したばかり。
My wife and I just talked about it last night. Even if we do have something, we agreed that we would like to know about it.
人生一度きり。
Life is just once.
そして最終地点は同じ。
The final goal is the same for everyone.
だから知りたい。
So we want to know about it,
残りの時間を有意義に過ごすために...
to live our remaining life better...
日々の生活で注意すべきことを明確にするために...
to live our life better knowing what to do or what not to do...
そして、もっと長くLeoと一緒にいるために...
And to live and continue to support Leo for much longer...
(c)Todd 2013
Category 病院 (Hospital)
2日連続での定期健診。
Doctor follow-ups two days in a row.
今日は神経科。4ヶ月ぶり。
Today's was the 4-month follow-up with his neurologist.
さまざまな検査結果はいつものようにすべて異常なし。
During the 4 months, various tests were done and the results came back as all normal, again...
そして、とても重要な検査結果が発表に。
And one of the most important results is...
それは以前書いたFR抗体検査の結果。
That's the result from Folate Receptor (FR) antibody assay
で、結論は異常なし。
To say the conclusion first, it was all normal.
つまり、LeoはCFD（脳葉酸欠乏症）ではないことが判明…
This means that Leo does NOT actually have CFD (Cerebral Folate Deficiency).
薬のLeucovorinも効かないから、そうだろうとは予測していたが、またこれで原因不明度が増してしまった。
We had expected the result since the medication Leucovorin did not improve his symptoms. But that takes us back to the beginning and deepens the mystery on the root cause...
一年前Leoの病気の根本の原因をやっと見つけたと思ったのに...
We thought we had finally found the root cause a year ago, but now we were dumped in the dark again...
このブログのタイトルも変えないと…
And I need to obviously change the blog title now...
そして、また新たな原因探しの旅が始まる。
Another journey of searching the root cause starts today...
といっても、日米で、単体の検査はもうするのも無いくらいしている。
although we have gone through so many tests here and in Japan, so the numbers of tests remaining is pretty exhausted.
ということで、担当の先生と話した結果、全エクソン配列解析を「受けれるように動いてみよう」とのこと。
After we discussed with his neurologist, we agreed to "make an effort" to have "Whole Exome Sequencing".
「受けれるように動いてみよう」とは、この系の遺伝子検査は新しすぎて、保険会社も州のMedi-Calも承認しないということ。
"make an effort" means that the tests like Whole Exome Sequencing is so new that neither insurance companies nor State Medi-Cal cover the cost.
つまり実費…
In short, it will be all out-of-pocket...
まあ、分かってはいたけど…
We knew that already, but..., oh well...
では、全エクソン配列解析（Whole Exome Sequencing）とは何ぞや？という話になる。
Anyway, what is Whole Exome Sequencing in the first place?
実は全ゲノム配列解析(Whole Genome Sequencing)は知ってたけど、これは知らなかった。まだまだ勉強不足…
We knew "Whole Genome Sequencing" but did not know about it. I need to study more...
まあ、要は全ゲノム配列解析の簡易版というか実用版らしい。
In short, it is a realistic alternative to Whole Genome Sequencing.
全ゲノム配列解析は約30億ある塩基対すべてを読み込んで、遺伝子変異が見られるかを分析する。
Whole Genome Sequencing reads the entire 3 billion base pairs to find out genetic mutations causing the diseases.
しかし問題はコスト。
The problem is the cost.
最近安くなってきたとは言え、ゲノムすべてを読み込むのに最低10万円。
It has been getting cheaper, but still just reading the entire genome costs at least $1000.
しかし、もっともコストがかかるのがその後の解析でウン百万円かかる（らしい）…
But more expensive is the analysis later, which could amount to tens of thousands dollars.
Appleの前社長のSteve Jobsがこの全ゲノム配列解析に1000万円払った話は有名だ。
Famous story is that the former Apple CEO Steve Jobs reportedly paid $100,000 for the test.
そこで出てきたのが、この全エクソン配列解析。
So this is too expensive for a regular person like me and that's why this Whole Exome Sequencing was invented.
これは端的に言うと、ゲノム全体の2％のみを解析することで遺伝子変異の85％をカバーするというもの。
In short, it reads only 2% of the entire genome that covers 85% of areas where the diseases come from.
タンパク質をコードするゲノムのうち、ヒトの疾患の原因となる遺伝子変異の約85%はエクソン領域が由来で、そこにターゲットを絞った解析方法らしい。
It is targeting at those 2% exome areas that are responsible for 85% of generic diseases (it is also called "targeted exome capture").
だからコスト面で現実的かつ、膨大が計算が省かれるから解析も速く効率的なようだ。
Thus, it is realistic method in terms of cost, and fast and efficient with significantly less computation.
コスト面で現実的といっても、ウン十万円から数百万円の話。
Well, it is realistic compared with the cost with whole body sequencing, but still costs thousands or tens of thousands dollars.
その検査を「受けれるように動いてみよう」ということのようだ（涙）。
Anyway, we started going in that direction.
また行政やその他に助成プログラムがないか探す日々。
And I need to find some financial support program to get this test done.
そして、遺伝子変異を特定しても、大多数の脳疾患は現状では治療法や治療薬がないのが現実…(もちろん今のところは…だけど）
And it is the reality that even if we found the root cause, most of the brain diseases don't have cure as of today...
「不治の病」って言葉…
"disease without cure"...
もっと遠くに聞こえる言葉だったのに…
The phrase used to sound unreal to me...
今はたまにとても近くに聞こえるときがある…
But now it sounds really real sometimes...
また、もっともっと努力して、遠くに聞こえるようにしていかなきゃ…
I need to work harder and harder so that it again sounds unreal...
そして一緒にそんな言葉ふっ飛ばそうぜ！
And let's beat that phrase together!
な！Leo！
Right? Leo!
Doctor follow-ups two days in a row.
今日は神経科。4ヶ月ぶり。
Today's was the 4-month follow-up with his neurologist.
さまざまな検査結果はいつものようにすべて異常なし。
During the 4 months, various tests were done and the results came back as all normal, again...
そして、とても重要な検査結果が発表に。
And one of the most important results is...
それは以前書いたFR抗体検査の結果。
That's the result from Folate Receptor (FR) antibody assay
で、結論は異常なし。
To say the conclusion first, it was all normal.
つまり、LeoはCFD（脳葉酸欠乏症）ではないことが判明…
This means that Leo does NOT actually have CFD (Cerebral Folate Deficiency).
薬のLeucovorinも効かないから、そうだろうとは予測していたが、またこれで原因不明度が増してしまった。
We had expected the result since the medication Leucovorin did not improve his symptoms. But that takes us back to the beginning and deepens the mystery on the root cause...
一年前Leoの病気の根本の原因をやっと見つけたと思ったのに...
We thought we had finally found the root cause a year ago, but now we were dumped in the dark again...
このブログのタイトルも変えないと…
And I need to obviously change the blog title now...
そして、また新たな原因探しの旅が始まる。
Another journey of searching the root cause starts today...
といっても、日米で、単体の検査はもうするのも無いくらいしている。
although we have gone through so many tests here and in Japan, so the numbers of tests remaining is pretty exhausted.
ということで、担当の先生と話した結果、全エクソン配列解析を「受けれるように動いてみよう」とのこと。
After we discussed with his neurologist, we agreed to "make an effort" to have "Whole Exome Sequencing".
「受けれるように動いてみよう」とは、この系の遺伝子検査は新しすぎて、保険会社も州のMedi-Calも承認しないということ。
"make an effort" means that the tests like Whole Exome Sequencing is so new that neither insurance companies nor State Medi-Cal cover the cost.
つまり実費…
In short, it will be all out-of-pocket...
まあ、分かってはいたけど…
We knew that already, but..., oh well...
では、全エクソン配列解析（Whole Exome Sequencing）とは何ぞや？という話になる。
Anyway, what is Whole Exome Sequencing in the first place?
実は全ゲノム配列解析(Whole Genome Sequencing)は知ってたけど、これは知らなかった。まだまだ勉強不足…
We knew "Whole Genome Sequencing" but did not know about it. I need to study more...
まあ、要は全ゲノム配列解析の簡易版というか実用版らしい。
In short, it is a realistic alternative to Whole Genome Sequencing.
全ゲノム配列解析は約30億ある塩基対すべてを読み込んで、遺伝子変異が見られるかを分析する。
Whole Genome Sequencing reads the entire 3 billion base pairs to find out genetic mutations causing the diseases.
しかし問題はコスト。
The problem is the cost.
最近安くなってきたとは言え、ゲノムすべてを読み込むのに最低10万円。
It has been getting cheaper, but still just reading the entire genome costs at least $1000.
しかし、もっともコストがかかるのがその後の解析でウン百万円かかる（らしい）…
But more expensive is the analysis later, which could amount to tens of thousands dollars.
Appleの前社長のSteve Jobsがこの全ゲノム配列解析に1000万円払った話は有名だ。
Famous story is that the former Apple CEO Steve Jobs reportedly paid $100,000 for the test.
そこで出てきたのが、この全エクソン配列解析。
So this is too expensive for a regular person like me and that's why this Whole Exome Sequencing was invented.
これは端的に言うと、ゲノム全体の2％のみを解析することで遺伝子変異の85％をカバーするというもの。
In short, it reads only 2% of the entire genome that covers 85% of areas where the diseases come from.
タンパク質をコードするゲノムのうち、ヒトの疾患の原因となる遺伝子変異の約85%はエクソン領域が由来で、そこにターゲットを絞った解析方法らしい。
It is targeting at those 2% exome areas that are responsible for 85% of generic diseases (it is also called "targeted exome capture").
だからコスト面で現実的かつ、膨大が計算が省かれるから解析も速く効率的なようだ。
Thus, it is realistic method in terms of cost, and fast and efficient with significantly less computation.
コスト面で現実的といっても、ウン十万円から数百万円の話。
Well, it is realistic compared with the cost with whole body sequencing, but still costs thousands or tens of thousands dollars.
その検査を「受けれるように動いてみよう」ということのようだ（涙）。
Anyway, we started going in that direction.
また行政やその他に助成プログラムがないか探す日々。
And I need to find some financial support program to get this test done.
そして、遺伝子変異を特定しても、大多数の脳疾患は現状では治療法や治療薬がないのが現実…(もちろん今のところは…だけど）
And it is the reality that even if we found the root cause, most of the brain diseases don't have cure as of today...
「不治の病」って言葉…
"disease without cure"...
もっと遠くに聞こえる言葉だったのに…
The phrase used to sound unreal to me...
今はたまにとても近くに聞こえるときがある…
But now it sounds really real sometimes...
また、もっともっと努力して、遠くに聞こえるようにしていかなきゃ…
I need to work harder and harder so that it again sounds unreal...
そして一緒にそんな言葉ふっ飛ばそうぜ！
And let's beat that phrase together!
な！Leo！
Right? Leo!
Category 病院 (Hospital)
今日は整形外科のFollow Up。
We went to a follow-up with Orthopedics.
いつものメインのところではなく、若干近場で内陸のところへ。
Today, the doctor is in the office in inland a bit closer to our home.
空いてるからこっちのほうがいいかな？
It was not crowded, so I prefer there actually to the main office.
それにしても内陸は暑い。家を出た時は24度。それが30分車で内陸に行くとこんな感じ。33度って…
But the inland was hot! Our home was 80F but the inland was 96F.
約2年ぶりの整形外科。
It was for the first time in 2 years.
2年で立てなくなったLeoを見て先生もびっくり。
The orthopedic doctor seemed quite surprised the fact that Leo has became unable to stand up in the last two years.
今日はレントゲンを脊椎すべてと骨盤近辺を計3枚。
We took X-ray images of upper/lower spine and the hip.
背骨の曲がりも足首のねじれも無く、何も異常なしとのこと。
No sign of scoliosis and no distortion on his ankles and legs, so it was all normal.
どこに行っても、どの検査をしても異常なしといわれる。
We always hear this wherever we go. "It is all normal."
こんなに異常が明らかなのに…
Even though he is obviously not growing normal...
異常なしという検査結果を聞くたびに、安心すると同時に、また暗い闇に突き落とされる。
Whenever we hear those normal test results, we feel relieved, but at the same time, we are thrown away in the dark again...
この笑顔だけが唯一の救いだ…
This smile always saves us whenever we feel down...
We went to a follow-up with Orthopedics.
いつものメインのところではなく、若干近場で内陸のところへ。
Today, the doctor is in the office in inland a bit closer to our home.
空いてるからこっちのほうがいいかな？
It was not crowded, so I prefer there actually to the main office.
それにしても内陸は暑い。家を出た時は24度。それが30分車で内陸に行くとこんな感じ。33度って…
But the inland was hot! Our home was 80F but the inland was 96F.
約2年ぶりの整形外科。
It was for the first time in 2 years.
2年で立てなくなったLeoを見て先生もびっくり。
The orthopedic doctor seemed quite surprised the fact that Leo has became unable to stand up in the last two years.
今日はレントゲンを脊椎すべてと骨盤近辺を計3枚。
We took X-ray images of upper/lower spine and the hip.
背骨の曲がりも足首のねじれも無く、何も異常なしとのこと。
No sign of scoliosis and no distortion on his ankles and legs, so it was all normal.
どこに行っても、どの検査をしても異常なしといわれる。
We always hear this wherever we go. "It is all normal."
こんなに異常が明らかなのに…
Even though he is obviously not growing normal...
異常なしという検査結果を聞くたびに、安心すると同時に、また暗い闇に突き落とされる。
Whenever we hear those normal test results, we feel relieved, but at the same time, we are thrown away in the dark again...
この笑顔だけが唯一の救いだ…
This smile always saves us whenever we feel down...
Category つぶやき (Tweets)
日曜日の事だが、ビーチ後に友達のドイツ人のところで皆でBBQ。
Last sunday, we had a BBQ party at my German friend's place after having fun at the beach.
子供たちもモリモリ食べる食べる！
Kids ate a lot!
親も美味しく頂きました。
And so did the parents.
で、食事後マッタリしてるところに登場したのがこれ。
And this came in after dinner.
ドイツ人の彼が作ってくれたサプライズBDケーキ。
It is the case he made for my birthday! A big surprise?!
といっても、彼の娘が海にいたときから、「今日おうちでハッピーバースデーやるから内緒だよ」と無邪気に教えてくれてました（＾＾）。
Well, it was in fact obvious since his daughter was kindly telling me at the beach that she's gonna have a birthday party at her house:-).
でもここまで凝ったケーキが出てきたのはホントにサプライズ。
But I did not expect this elaborated case that he made.
皆さんに感謝感謝です。Danke!
Thanks everyone! Danke!
それにしても、まるで背番号のように主張している41という数字(^-^)
Look at this number 41, which makes me realize my age too straight...
この歳に負けずに Keep Surfing ですね
Well, I still feel young, so I will keep surfing as it says!
Last sunday, we had a BBQ party at my German friend's place after having fun at the beach.
子供たちもモリモリ食べる食べる！
Kids ate a lot!
親も美味しく頂きました。
And so did the parents.
で、食事後マッタリしてるところに登場したのがこれ。
And this came in after dinner.
ドイツ人の彼が作ってくれたサプライズBDケーキ。
It is the case he made for my birthday! A big surprise?!
といっても、彼の娘が海にいたときから、「今日おうちでハッピーバースデーやるから内緒だよ」と無邪気に教えてくれてました（＾＾）。
Well, it was in fact obvious since his daughter was kindly telling me at the beach that she's gonna have a birthday party at her house:-).
でもここまで凝ったケーキが出てきたのはホントにサプライズ。
But I did not expect this elaborated case that he made.
皆さんに感謝感謝です。Danke!
Thanks everyone! Danke!
それにしても、まるで背番号のように主張している41という数字(^-^)
Look at this number 41, which makes me realize my age too straight...
この歳に負けずに Keep Surfing ですね
Well, I still feel young, so I will keep surfing as it says!
Category CFDとは (About CFD)
Leoは何らかの理由で脳から全身への信号がうまく伝わらない。
Leo has this condition caused by the brain signal not reaching the body parts normally.
だから身体を支えてられないし、言葉もしゃべれない。
So he cannot keep his posture and has not much control in speech.
そして時間とともに少しずつ悪化している…
And it is getting worse gradually...
だからいつも思う。
So I always wonder...
Leoは一体どう思っているんだろう？
what's in his mind...
彼の心の中ではどんなことを感じているんだろう？
what he is feeling in his inner world?
どんどんいろんなことができなくなっている自分の身体を見て…
He knew he is becoming unable to do what he was able to do without any problem...
もちろんLeoはまだ4歳。
Well, I know he is still 4 years old...
言葉がしゃべれても、それを伝えるのは難しい。
So even if he could talk, it would be hard for a 4-year-old to explain about it verbally.
だからよく同じ症状の人たちが書いているブログを読んだりする。
So I often read some blog posts with similar symptoms.
大部分が読み書きがしっかりできる大人のだけど、読んでいると結構、心に突き刺さる。
Most of them are adults, who can physically write a blog. But they really make me realize how Leo is feeling.
これなんかもそう。昨日出会いました。
This is another blog I found yesterday.
EXTREME LIVING - How I live with Ataxia
この女性は自分自身、Leoのような病気の人のリハビリをする理学療法士。
This girl seems like a physical therapist(?) who teaches physically challenged people like Leo on how to move body parts properly for rehab.
その人にそのフリードライヒ失調症(FA)が30歳と比較的遅く始まったケース。
Freidreich Ataxia (FA) started appearing when she was 30 or so.
FAは遺伝子疾患。遅かれ早かれ、症状が出始めるが、その時期は人によって異なる。(ちなみにLeoはFAではない。)
FA is a genetic disease. It depends on the individuals, but ataxia starts sooner or later if the person has the genetic mutation (Leo is not FA, by the way).
何がつらいかって、それまでは健康そのもの。
What's tough is that before ataxia starts to hit, the person is just normal.
そして今後どんどん悪くなっていくというのも本人は当然分かっている。
And FA is a progressive disease, so the patients know it gets worse gradually.
そんな不安の中、彼女は自分の体に起こっている変化と、それに伴う心の動きを克明に記録している。
She is recording in detail what's happening to her body and mind.
読んでいると、Leoもこんな風に思ってるのかな～とか、
As I read it, I have to think about Leo. Is he feeling like this?
こんなつらい思いをしていたのに分かってやれなくてゴメン…とか。
Or I feel sorry that sometimes I cannot feel his pain...
彼女が残す一文一文がLeoが書いているようで心に突き刺さる。
Her sentences really penetrate my heart as if Leo was writing them.
今後Leoが大きくなるにつれて問題も大きくなっていく。
We know the challenge gets bigger and bigger as he grows.
今から起こるだろう様々なことに対応できるように、我々親も心と体をしっかり準備しておかなければ…
So we, as parents, need to prepare ourselves well, so that we can handle any kind of situations properly no matter how tough they are.
日々考えさせられます。
Too many things to think about everyday...
Leo has this condition caused by the brain signal not reaching the body parts normally.
だから身体を支えてられないし、言葉もしゃべれない。
So he cannot keep his posture and has not much control in speech.
そして時間とともに少しずつ悪化している…
And it is getting worse gradually...
だからいつも思う。
So I always wonder...
Leoは一体どう思っているんだろう？
what's in his mind...
彼の心の中ではどんなことを感じているんだろう？
what he is feeling in his inner world?
どんどんいろんなことができなくなっている自分の身体を見て…
He knew he is becoming unable to do what he was able to do without any problem...
もちろんLeoはまだ4歳。
Well, I know he is still 4 years old...
言葉がしゃべれても、それを伝えるのは難しい。
So even if he could talk, it would be hard for a 4-year-old to explain about it verbally.
だからよく同じ症状の人たちが書いているブログを読んだりする。
So I often read some blog posts with similar symptoms.
大部分が読み書きがしっかりできる大人のだけど、読んでいると結構、心に突き刺さる。
Most of them are adults, who can physically write a blog. But they really make me realize how Leo is feeling.
これなんかもそう。昨日出会いました。
This is another blog I found yesterday.
EXTREME LIVING - How I live with Ataxia
この女性は自分自身、Leoのような病気の人のリハビリをする理学療法士。
This girl seems like a physical therapist(?) who teaches physically challenged people like Leo on how to move body parts properly for rehab.
その人にそのフリードライヒ失調症(FA)が30歳と比較的遅く始まったケース。
Freidreich Ataxia (FA) started appearing when she was 30 or so.
FAは遺伝子疾患。遅かれ早かれ、症状が出始めるが、その時期は人によって異なる。(ちなみにLeoはFAではない。)
FA is a genetic disease. It depends on the individuals, but ataxia starts sooner or later if the person has the genetic mutation (Leo is not FA, by the way).
何がつらいかって、それまでは健康そのもの。
What's tough is that before ataxia starts to hit, the person is just normal.
そして今後どんどん悪くなっていくというのも本人は当然分かっている。
And FA is a progressive disease, so the patients know it gets worse gradually.
そんな不安の中、彼女は自分の体に起こっている変化と、それに伴う心の動きを克明に記録している。
She is recording in detail what's happening to her body and mind.
読んでいると、Leoもこんな風に思ってるのかな～とか、
As I read it, I have to think about Leo. Is he feeling like this?
こんなつらい思いをしていたのに分かってやれなくてゴメン…とか。
Or I feel sorry that sometimes I cannot feel his pain...
彼女が残す一文一文がLeoが書いているようで心に突き刺さる。
Her sentences really penetrate my heart as if Leo was writing them.
今後Leoが大きくなるにつれて問題も大きくなっていく。
We know the challenge gets bigger and bigger as he grows.
今から起こるだろう様々なことに対応できるように、我々親も心と体をしっかり準備しておかなければ…
So we, as parents, need to prepare ourselves well, so that we can handle any kind of situations properly no matter how tough they are.
日々考えさせられます。
Too many things to think about everyday...
Category Encinitas Life
毎週末、土曜か日曜、または土日はやっぱりビーチ！
It is summer! So we go to the beaches every Saturday and/or Sunday.
やっぱりサンディエゴ。子供たちも大好き！
It is THE San Diego life style. Kids love the beaches.
サクリと写真だけでもアップ。
Some beach pictures.
キャノピーの設営も秒殺。
No problem in putting the canopy in a few minutes.
陽射しが強いサンディエゴ。必需品かな？
San Diego sun is too strong. So this is a must!
でも結構デカイから、たまに監視塔から、「海が見えないから後ろに下げなさい」と言われたりする
But it is a big canopy, so sometimes the lifeguard tower tells us "put it back a bit so that it does not obstruct our view!" :-)
Leoもパパが支えて波を追いかけたり、砂浜にプールを掘ったり(パパが)
Leo loves to chase waves with my support and also loves the pool that I dig.
残念ながらずっと付きっきり。だからそれをしている写真がない…
But no pictures of it since I am usually holding his trunk area.
遊んでから一息ついてる写真ばかり。
Most of the pictures are after that.
一方Senaはお友達の女の子とひたすらお菓子を食べておしゃべり。
On the other hand, the girls are chatting with the snacks.
この時から変わらないのですね。女の子は(^-^)
Girls never change since they are small :-)
この3人は歳も近いからとても仲良し。
Their age is close to each other, so they are like brother and sisters.
大満足なLeo.
Happy Leo.
この日は、車イスの方二人がボードに腹ばいにしてもらって周りのプロ？の方たちに押してもらってサーフィンしてた。
Today, there were two adults in wheelchairs, who were surfing with the assistance by pros(?).
Leoにシャワーを浴びさせている時、そのうちの一人と一緒に。
We bumped into one of them while we were taking a shower.
その人はすぐLeoに気付き、言葉ではなく、目で「お前も頑張れよ！」とLeoに言っているようだった。
She immediately noticed Leo and looked as if she was talking to him eye to eye saying "hang in there, little kid!".
何とか可能な方法を見つけて、息子と一緒に波に乗りたい。
I will definitely search for a way to surf with him.
いつか、必ず…
Someday but for sure...
なっ、Leo
It is summer! So we go to the beaches every Saturday and/or Sunday.
やっぱりサンディエゴ。子供たちも大好き！
It is THE San Diego life style. Kids love the beaches.
サクリと写真だけでもアップ。
Some beach pictures.
キャノピーの設営も秒殺。
No problem in putting the canopy in a few minutes.
陽射しが強いサンディエゴ。必需品かな？
San Diego sun is too strong. So this is a must!
でも結構デカイから、たまに監視塔から、「海が見えないから後ろに下げなさい」と言われたりする
But it is a big canopy, so sometimes the lifeguard tower tells us "put it back a bit so that it does not obstruct our view!" :-)
Leoもパパが支えて波を追いかけたり、砂浜にプールを掘ったり(パパが)
Leo loves to chase waves with my support and also loves the pool that I dig.
残念ながらずっと付きっきり。だからそれをしている写真がない…
But no pictures of it since I am usually holding his trunk area.
遊んでから一息ついてる写真ばかり。
Most of the pictures are after that.
一方Senaはお友達の女の子とひたすらお菓子を食べておしゃべり。
On the other hand, the girls are chatting with the snacks.
この時から変わらないのですね。女の子は(^-^)
Girls never change since they are small :-)
この3人は歳も近いからとても仲良し。
Their age is close to each other, so they are like brother and sisters.
大満足なLeo.
Happy Leo.
この日は、車イスの方二人がボードに腹ばいにしてもらって周りのプロ？の方たちに押してもらってサーフィンしてた。
Today, there were two adults in wheelchairs, who were surfing with the assistance by pros(?).
Leoにシャワーを浴びさせている時、そのうちの一人と一緒に。
We bumped into one of them while we were taking a shower.
その人はすぐLeoに気付き、言葉ではなく、目で「お前も頑張れよ！」とLeoに言っているようだった。
She immediately noticed Leo and looked as if she was talking to him eye to eye saying "hang in there, little kid!".
何とか可能な方法を見つけて、息子と一緒に波に乗りたい。
I will definitely search for a way to surf with him.
いつか、必ず…
Someday but for sure...
なっ、Leo
Category Encinitas Life
今日はママはお友達が作るインテリア作品(http://www.himoart.com/)の展示会のお手伝い。パパが一日子供二人を面倒見る日です。
My wife is out all day today for helping her friend's art work exhibit (http://www.himoart.com/). So I am in charge of the two little ones.
まずは展示会をしているママとお友達にサプライズで花をプレゼントしようと近くのFranco's Flowerへ。
First, we went to buy a surprise gift to her friend, so we stopped by Franco's Flower.
完全にただの倉庫。実はここは花の卸問屋。だから花屋さんに卸す前の新鮮な花を格安でGETでき、アレンジメントもうまい。
This is a flower whole sale place, so all the flowers are fresh and cheap, and their arrangement is excellent. Highly recommended.
飾り付けてもらっている間は、併設してあるインコの入ったケージを見てLeo大喜び。
While getting the arrangement ready, Leo was having fun looking at the bird cages with full of parakeets.
ちなみに、SenaはLeoの後ろの席で爆睡中。
On the other hand, Sena was sleeping behind Leo.
お友達にも喜んでもらいました。
We were glad that her friend really liked the gift.
フォトブースがあったので、記念に家族で一枚。
And we found the photo booth, so took a family photo.
その後はSea Worldへ。
After that, we went to Sea World!
といっても、二人とも2日前に来たばかり。だから日頃行かないところを攻めてみた。
But they came here two days ago, so we went to the unusual places this time.
まずは亀の着ぐるみと一枚。
A picture with a big turtle.
Sena、怖くて号泣…
Sena is scared and cried like everyone in Sea World can hear :-)
結構小心者(^-^)
She is so easy to get scared...
ビーバーに餌やってるのを見て…
Beaver eating lunch...
ハリネズミ。二人ともあまり興味なし…
Porcupine. They looked no interest at all :-)
大トカゲ。Senaは怖くて近寄れない。Leoはこの通り。トカゲと睨めっこ。
A big lizard. Sena too scared to get close. Leo had fun gazing at him.
ベイビーのカブトガニもSenaは怖くてさわれず。Leoはナデナデ。
A little horse-shoe crab, which again Sena could not touch. Leo had fun petting him.
あとはPets Rule見て大満足。
And finally we watched the Pets Rules.
当然、家に帰ってご飯食べた後はこの状態。
They had fun all day, so they were like this after dinner.
パパ何とか乗り切りることが出来たよ。
It went OK today without their mom.
二人ともいい子にしててありがとー！
Thanks guys for being good kids all day today!
My wife is out all day today for helping her friend's art work exhibit (http://www.himoart.com/). So I am in charge of the two little ones.
まずは展示会をしているママとお友達にサプライズで花をプレゼントしようと近くのFranco's Flowerへ。
First, we went to buy a surprise gift to her friend, so we stopped by Franco's Flower.
完全にただの倉庫。実はここは花の卸問屋。だから花屋さんに卸す前の新鮮な花を格安でGETでき、アレンジメントもうまい。
This is a flower whole sale place, so all the flowers are fresh and cheap, and their arrangement is excellent. Highly recommended.
飾り付けてもらっている間は、併設してあるインコの入ったケージを見てLeo大喜び。
While getting the arrangement ready, Leo was having fun looking at the bird cages with full of parakeets.
ちなみに、SenaはLeoの後ろの席で爆睡中。
On the other hand, Sena was sleeping behind Leo.
お友達にも喜んでもらいました。
We were glad that her friend really liked the gift.
フォトブースがあったので、記念に家族で一枚。
And we found the photo booth, so took a family photo.
その後はSea Worldへ。
After that, we went to Sea World!
といっても、二人とも2日前に来たばかり。だから日頃行かないところを攻めてみた。
But they came here two days ago, so we went to the unusual places this time.
まずは亀の着ぐるみと一枚。
A picture with a big turtle.
Sena、怖くて号泣…
Sena is scared and cried like everyone in Sea World can hear :-)
結構小心者(^-^)
She is so easy to get scared...
ビーバーに餌やってるのを見て…
Beaver eating lunch...
ハリネズミ。二人ともあまり興味なし…
Porcupine. They looked no interest at all :-)
大トカゲ。Senaは怖くて近寄れない。Leoはこの通り。トカゲと睨めっこ。
A big lizard. Sena too scared to get close. Leo had fun gazing at him.
ベイビーのカブトガニもSenaは怖くてさわれず。Leoはナデナデ。
A little horse-shoe crab, which again Sena could not touch. Leo had fun petting him.
あとはPets Rule見て大満足。
And finally we watched the Pets Rules.
当然、家に帰ってご飯食べた後はこの状態。
They had fun all day, so they were like this after dinner.
パパ何とか乗り切りることが出来たよ。
It went OK today without their mom.
二人ともいい子にしててありがとー！
Thanks guys for being good kids all day today!
Category つぶやき (Tweets)
やっぱり日によってLeoが調子がいい日と悪い日がまちまち。
Leo's condition has good days and bad days and they are not steady.
今日は悪い日かな～。体がふにゃふにゃ。
Today is a bad day. His trunk is so loose...
Leoも体が思うように動かないから、なんだか元気ないし、それを見てパパもママも凹む…
He is not energetic knowing his body does not move as he wants.
Looking at him like that really makes us feel down... really...
希望の光が見えてきたのにな～。
We thought we finally see the light of hope recently, but ...
なかなか思うようには太くなってくれないです
Well, things don't go well always...
Leo's condition has good days and bad days and they are not steady.
今日は悪い日かな～。体がふにゃふにゃ。
Today is a bad day. His trunk is so loose...
Leoも体が思うように動かないから、なんだか元気ないし、それを見てパパもママも凹む…
He is not energetic knowing his body does not move as he wants.
Looking at him like that really makes us feel down... really...
希望の光が見えてきたのにな～。
We thought we finally see the light of hope recently, but ...
なかなか思うようには太くなってくれないです
Well, things don't go well always...
Category Encinitas Life
我が家はママが活発な人で、家にずっと居れないタイプ。だから子供二人を連れて毎日お出かけする。
My wife likes to go out and cannot stay home all day. So she takes the kids out everyday.
もちろんパパがいない時は、ママはLeoに付きっきりでお世話。
Of course she is busy assisting Leo all the time whenever I am not available.
Senaはそれを見てヤキモチ全開でLeoを叩いたりする。
Sena gets really jealous and sometimes hits Leo.
その仕返しとして、Leoは泣いてSenaを羽交い締め。
Then Leo gets mad and he chokes her with his arms crying as a revenge.
Senaもママに怒られて奇声を挙げて大泣き。
Sena gets scolded by her mom, cries and screams like crazy...
ところ構わず、このパターンが繰り返される。
This is a typical pattern repeated everywhere anytime.
そんな二人だが、仲がいい時も当然ある。
But there are times that both of them are playing happily.
例えばガレージのところでシャボン玉で遊んでる時やプールに入っているときは特に。
They play well especially when they are playing by the garage with bubbles or in the water together at the swimming pool.
チョークで壁にイタズラ書きしたり、
He likes to draw on the wall,
大好きな車を運転中？
And he like to drive a car?
シャボン玉遊び。
Playing with bubbles.
一緒に泳ぐ練習中。全身運動だからLeoの体幹がしっかり鍛えられる。
Swimming lessons? Swimming is good for training Leo's loose trunk.
プールの後はジャクジー。気持ちいいー！
Jacuzzi after pool. Feeling good!
帰りにコガネムシ発見！LeoもSenaも興味津々。
Found a bug! Leo and Sena showing interest.
ゆっくりだけど、一生懸命前に進んでました。
He was working hard and was moving forward slowly.
Leo…
みんなと一緒なことはなかなかできないけど、ゆっくりでもいい。少しずつでもいいから、前に進んでいこうね。
You are not able to the same things as other kids now, but let's move forward together slowly little by little like this bug, ok?
My wife likes to go out and cannot stay home all day. So she takes the kids out everyday.
もちろんパパがいない時は、ママはLeoに付きっきりでお世話。
Of course she is busy assisting Leo all the time whenever I am not available.
Senaはそれを見てヤキモチ全開でLeoを叩いたりする。
Sena gets really jealous and sometimes hits Leo.
その仕返しとして、Leoは泣いてSenaを羽交い締め。
Then Leo gets mad and he chokes her with his arms crying as a revenge.
Senaもママに怒られて奇声を挙げて大泣き。
Sena gets scolded by her mom, cries and screams like crazy...
ところ構わず、このパターンが繰り返される。
This is a typical pattern repeated everywhere anytime.
そんな二人だが、仲がいい時も当然ある。
But there are times that both of them are playing happily.
例えばガレージのところでシャボン玉で遊んでる時やプールに入っているときは特に。
They play well especially when they are playing by the garage with bubbles or in the water together at the swimming pool.
チョークで壁にイタズラ書きしたり、
He likes to draw on the wall,
大好きな車を運転中？
And he like to drive a car?
シャボン玉遊び。
Playing with bubbles.
一緒に泳ぐ練習中。全身運動だからLeoの体幹がしっかり鍛えられる。
Swimming lessons? Swimming is good for training Leo's loose trunk.
プールの後はジャクジー。気持ちいいー！
Jacuzzi after pool. Feeling good!
帰りにコガネムシ発見！LeoもSenaも興味津々。
Found a bug! Leo and Sena showing interest.
ゆっくりだけど、一生懸命前に進んでました。
He was working hard and was moving forward slowly.
Leo…
みんなと一緒なことはなかなかできないけど、ゆっくりでもいい。少しずつでもいいから、前に進んでいこうね。
You are not able to the same things as other kids now, but let's move forward together slowly little by little like this bug, ok?
