Category 病院 (Hospital)
今日の朝、エクソム解析するため血を採った。
This morning, we had our blood taken for the Whole Exome Sequencing (WES).
Leo、パパ、ママの順で。
In the order of Leo, me, and my wife.
結構な量の血液を採った。
They said they need a good amount of blood for sequencing, so they took a lot.
Leoはパパのヒザの上に乗って。
So Leo was on my lap in pain,
痛がるLeoを採血する人、補助の人、パパ、ママの4人がかりで抑えて。
with 4 of us, the specialist and her assistance, me and my wife, holding him not to move.
泣きそうになるのを堪えて、Leoはずっと耐えていた。
He was about to cry but endured it the entire time.
こっちが泣きそうになった。
I was about to cry looking at him like that.
こんな痛い思いをLeoはもう数えられないほど経験している。
He has gone through so many painful things because of his disease.
Leo、
Leo,
パパはLeoのことを誇りに思うぞ。
I am so proud of you.
頑張ってる。本当に頑張ってる。
You are always trying hard. Always, really.
いろんな辛いことに耐えてここまで来てる。
You have fought against many tough things.
パパも頑張るから。
I will try hard too like you,
少しでもその辛さが自分にも分かるように。
so that I can feel your pain a bit more,
少しでもその辛さをLeoが経験する必要がないようにするために。
so that I can reduce your pain a bit more.
![IMG_2405[1]](https://blog-imgs-37-origin.fc2.com/l/e/o/leosena/2013100212463689f.jpg)
This morning, we had our blood taken for the Whole Exome Sequencing (WES).
Leo、パパ、ママの順で。
In the order of Leo, me, and my wife.
結構な量の血液を採った。
They said they need a good amount of blood for sequencing, so they took a lot.
Leoはパパのヒザの上に乗って。
So Leo was on my lap in pain,
痛がるLeoを採血する人、補助の人、パパ、ママの4人がかりで抑えて。
with 4 of us, the specialist and her assistance, me and my wife, holding him not to move.
泣きそうになるのを堪えて、Leoはずっと耐えていた。
He was about to cry but endured it the entire time.
こっちが泣きそうになった。
I was about to cry looking at him like that.
こんな痛い思いをLeoはもう数えられないほど経験している。
He has gone through so many painful things because of his disease.
Leo、
Leo,
パパはLeoのことを誇りに思うぞ。
I am so proud of you.
頑張ってる。本当に頑張ってる。
You are always trying hard. Always, really.
いろんな辛いことに耐えてここまで来てる。
You have fought against many tough things.
パパも頑張るから。
I will try hard too like you,
少しでもその辛さが自分にも分かるように。
so that I can feel your pain a bit more,
少しでもその辛さをLeoが経験する必要がないようにするために。
so that I can reduce your pain a bit more.
![IMG_2405[1]](http://leosena.blog.fc2.com/img/2013100212463689f.jpg/)
Category つぶやき (Tweets)
いつもLeoとSenaのことばかりだから、今日はママについて書こうと思う。
I always write about Leo and Sena here, so time to talk about my wife.
我々の日々の生活は時間に追われてる。
In everyday life, we are so busy.
レオトのことを全てしてあげなきゃいけないから何をするにも時間がかかる。
It takes way longer to do everything while taking care of everything for Leo.
よく言われる「子供をお風呂に入れて、ご飯を食べさせてもう大変」なのとは訳が違う。
You hear often "oh! very busy having kids take a shower and feed them, etc". To be honest, it is nothing comparable with our busy schedule.
毎日が苦悩の連続。
Struggling, everyday...
最近仕事で忙しくて帰ってくるのも夜11時12時がざら。週末も仕事してたりするから、あまりママを手伝えてない。
And my work has been hectic too, so I often come home late like around midnight. So all the stuff is done by my wife.
申し訳ないと思ってる。
So I feel sorry for her.
レオトのことを全部一人でさせてしまって。
Sorry that I cannot help much now in assisting Leo.
学校、セラピー、病院、カイロの送迎に、レオトを看ながら掃除、買い物、セナの送迎、ご飯作って、風呂に入れてご飯食べさせて寝かせて。
My wife takes him to the school, therapies, hospitals, chiropractics, and does all daily chores, drop off/pick up Sena, making food, taking a shower with them, and reading books by their beds.
レオトがすること全てを物理的にしてあげなければならない。
Sounds normal, right? Except she needs to do everything for Leo with physical assistance.
その上、子供が寝てから仕事までして。
And she works after kids go to bed.
本当に頭が上がらない…
I could not appreciate this enough...
ありがとう、ママ。
Thank you. Really Thank you.
もうちょっと自分の仕事のほうも何とかして、もっと手伝えるようにしなければ…
I need to think about work a little bit, so that I can help Leo and my wife more.
I always write about Leo and Sena here, so time to talk about my wife.
我々の日々の生活は時間に追われてる。
In everyday life, we are so busy.
レオトのことを全てしてあげなきゃいけないから何をするにも時間がかかる。
It takes way longer to do everything while taking care of everything for Leo.
よく言われる「子供をお風呂に入れて、ご飯を食べさせてもう大変」なのとは訳が違う。
You hear often "oh! very busy having kids take a shower and feed them, etc". To be honest, it is nothing comparable with our busy schedule.
毎日が苦悩の連続。
Struggling, everyday...
最近仕事で忙しくて帰ってくるのも夜11時12時がざら。週末も仕事してたりするから、あまりママを手伝えてない。
And my work has been hectic too, so I often come home late like around midnight. So all the stuff is done by my wife.
申し訳ないと思ってる。
So I feel sorry for her.
レオトのことを全部一人でさせてしまって。
Sorry that I cannot help much now in assisting Leo.
学校、セラピー、病院、カイロの送迎に、レオトを看ながら掃除、買い物、セナの送迎、ご飯作って、風呂に入れてご飯食べさせて寝かせて。
My wife takes him to the school, therapies, hospitals, chiropractics, and does all daily chores, drop off/pick up Sena, making food, taking a shower with them, and reading books by their beds.
レオトがすること全てを物理的にしてあげなければならない。
Sounds normal, right? Except she needs to do everything for Leo with physical assistance.
その上、子供が寝てから仕事までして。
And she works after kids go to bed.
本当に頭が上がらない…
I could not appreciate this enough...
ありがとう、ママ。
Thank you. Really Thank you.
もうちょっと自分の仕事のほうも何とかして、もっと手伝えるようにしなければ…
I need to think about work a little bit, so that I can help Leo and my wife more.
Category リハビリ (Rehab)
今日は朝の8時半から大忙し。
This morning was busy from 8:30.
LeoのPTの先生と補助器具の業者の人が家に来て置いていったものはこちら。
Because we had Leo's physical therapist and medical equipment guy at home and they left the following:
ついに来ました！Leoにとっては最初の車イスと歩行訓練器、そして入浴補助イス。
Yes, finally! Leo's first wheelchair, gait walker, and bath chair!
車イスはLeoの名前入り！Cool!
See Leo's name on the seat! Cool, isn't it?
業者の人とPTの先生に調整してもらいながら取り扱いについて説明を受ける。
We got the equipment adjusted and also got the instructions.
Leoも結構満足そう。
Leo looked very happy.
胸、肩、腰がベルトで締められているから、体が安定。テーブルもつくから、これでたくさん勉強したり、指を動かす練習したり。ご飯も食べれるね。
His body get stabilized with the belt all over his body, so he can now study, practice finger movement more, and even eat food on the table.
もう一つの歩行訓練器は今まで学校から借りてたものよりワンサイズ上の大きさ。そして何より腕のサポートと握るところがあるから、上半身をより安定させることができる。
The gait trainer is one size bigger than the one we are borrowing from school. What's better with it is that it has the arm support that he can grab and stabilize the upper body more.
Leoもこれには満足。初めてこんなにスムーズに歩けたことに感動。
Leo was very exited and so were we because he had never walked like this smoothly before.
パパ、興奮しすぎて声が大きすぎ？（いつも？）
My voice is too loud, isn't it? (always?)
こちらは入浴の補助イス。ちょっと大きいから普通のイスとしてリビングで使ってそう（＾＾
And this one is a bath chair. We may use it as a regular chair in the living room.
その間Senaはずっと不機嫌。Leoばっかりって感じで不公平感たっぷりの顔してたね。あとで何か違うもので埋め合わせするからね。
Sena was in a bad mood throughout their visit. She was feeling unfair about the stuff that her brother got. So we are making up with something for her later.
最後に明細と配達書類にサインして終了。明細にはびっくりするような金額が。５０万、３０万、１０万ともうすぐ桁が上がりそう。
Finally we signed the delivery statements and got scared about the prices...$5K, $3K, and $1K...close to double digit K dollars...
もちろん、Medi-Calが払ってくれるから実費ゼロだけど、医療関係のものはアメリカは本当に高いことを実感。
Well, we have Medi-cal cover the cost but realized again that the medical cost is very high in the states.
同時に今後の生活もどんどん変わっていくことも実感。
And at the same time we realized our daily life needs to change too.
とくに車イス。
Especially with this wheelchair...
小さく見えるけど、これ、実は結構重い。パパでやっと。ママは持ち上げるのが大変。
It looks small but it is in fact heavy. Even I have trouble lifting it up, so no way for my wife to be able to do that.
そうなると、折りたたみのスロープも頼まないと。ママにこの車イスを載せたり降ろしたりは厳しい（パパの腰にも厳しいけど）。
So we need a portable ramp to put it in/out of the car. Otherwise my wife and I will hurt our back, which are already problematic.
学校では送迎を頼むように薦められた。そしたら、ほぼずっとLeoは車イスなんだろうな～っと思ったり（今もそうではあるけど）。
We were told at school to use the shuttle bus service once he started the wheelchair. This means that he will be in the chair all the time, which makes me feel kinda sad... (even though he is already in a special chair at school all the time).
まだ先だけど、将来的に、Leoが大きくなったら、車の乗り降りも厳しくなってくる。
And although not in the near future, but we need to do something with the car when he becomes bigger.
だからミニバンの席を外して車イスに座ったまま乗れるようにしないといけないし。
We need to get rid of the seat in the minivan so that we can move him in the char into the car.
今の３階建てから平屋への引越しなんかも考えなきゃいけない。
We need to think about moving to a single-story place. Our twonhome is not a good place for a disabled person.
いろいろやることたくさん…
So many things to do...
ひとつひとつ、やっていこうと思う。
But we will just go one by one...
な、Leo?
Right, Leo?
This morning was busy from 8:30.
LeoのPTの先生と補助器具の業者の人が家に来て置いていったものはこちら。
Because we had Leo's physical therapist and medical equipment guy at home and they left the following:
ついに来ました！Leoにとっては最初の車イスと歩行訓練器、そして入浴補助イス。
Yes, finally! Leo's first wheelchair, gait walker, and bath chair!
車イスはLeoの名前入り！Cool!
See Leo's name on the seat! Cool, isn't it?
業者の人とPTの先生に調整してもらいながら取り扱いについて説明を受ける。
We got the equipment adjusted and also got the instructions.
Leoも結構満足そう。
Leo looked very happy.
胸、肩、腰がベルトで締められているから、体が安定。テーブルもつくから、これでたくさん勉強したり、指を動かす練習したり。ご飯も食べれるね。
His body get stabilized with the belt all over his body, so he can now study, practice finger movement more, and even eat food on the table.
もう一つの歩行訓練器は今まで学校から借りてたものよりワンサイズ上の大きさ。そして何より腕のサポートと握るところがあるから、上半身をより安定させることができる。
The gait trainer is one size bigger than the one we are borrowing from school. What's better with it is that it has the arm support that he can grab and stabilize the upper body more.
Leoもこれには満足。初めてこんなにスムーズに歩けたことに感動。
Leo was very exited and so were we because he had never walked like this smoothly before.
パパ、興奮しすぎて声が大きすぎ？（いつも？）
My voice is too loud, isn't it? (always?)
こちらは入浴の補助イス。ちょっと大きいから普通のイスとしてリビングで使ってそう（＾＾
And this one is a bath chair. We may use it as a regular chair in the living room.
その間Senaはずっと不機嫌。Leoばっかりって感じで不公平感たっぷりの顔してたね。あとで何か違うもので埋め合わせするからね。
Sena was in a bad mood throughout their visit. She was feeling unfair about the stuff that her brother got. So we are making up with something for her later.
最後に明細と配達書類にサインして終了。明細にはびっくりするような金額が。５０万、３０万、１０万ともうすぐ桁が上がりそう。
Finally we signed the delivery statements and got scared about the prices...$5K, $3K, and $1K...close to double digit K dollars...
もちろん、Medi-Calが払ってくれるから実費ゼロだけど、医療関係のものはアメリカは本当に高いことを実感。
Well, we have Medi-cal cover the cost but realized again that the medical cost is very high in the states.
同時に今後の生活もどんどん変わっていくことも実感。
And at the same time we realized our daily life needs to change too.
とくに車イス。
Especially with this wheelchair...
小さく見えるけど、これ、実は結構重い。パパでやっと。ママは持ち上げるのが大変。
It looks small but it is in fact heavy. Even I have trouble lifting it up, so no way for my wife to be able to do that.
そうなると、折りたたみのスロープも頼まないと。ママにこの車イスを載せたり降ろしたりは厳しい（パパの腰にも厳しいけど）。
So we need a portable ramp to put it in/out of the car. Otherwise my wife and I will hurt our back, which are already problematic.
学校では送迎を頼むように薦められた。そしたら、ほぼずっとLeoは車イスなんだろうな～っと思ったり（今もそうではあるけど）。
We were told at school to use the shuttle bus service once he started the wheelchair. This means that he will be in the chair all the time, which makes me feel kinda sad... (even though he is already in a special chair at school all the time).
まだ先だけど、将来的に、Leoが大きくなったら、車の乗り降りも厳しくなってくる。
And although not in the near future, but we need to do something with the car when he becomes bigger.
だからミニバンの席を外して車イスに座ったまま乗れるようにしないといけないし。
We need to get rid of the seat in the minivan so that we can move him in the char into the car.
今の３階建てから平屋への引越しなんかも考えなきゃいけない。
We need to think about moving to a single-story place. Our twonhome is not a good place for a disabled person.
いろいろやることたくさん…
So many things to do...
ひとつひとつ、やっていこうと思う。
But we will just go one by one...
な、Leo?
Right, Leo?
Category 病院 (Hospital)
今日はLeoの全エクソーム解析の準備段階として、遺伝子検査コンサルタントに会ってきた。
We had a meeting today with a genetic consultant as a preparation for Leo's whole exome sequencing.
主に、エクソーム解析とは何か？という説明と、その検査によってわかる事、わからない事などを詳しく教えてくれた。
She mainly explained about what the test does and its limitations in detail.
そして、家族親戚などの病歴などの情報を集めて、さまざまな同意書にサインして終了。
And she collected the information on the possible inheritance of diseases in our family trees.
Leoの遺伝子検査の結果として、ママと共に、我々自身の遺伝子情報を知りたいという選択肢を選んだ。
My wife and I chose to know our own gene information as a result of Leo's gene sequencing.
まあ事前に予測してた通りかな？
Mostly, everything was what we expected.
このエクソーム解析。
Whole exome sequencing.
現在行われている最新の方法らしいが、とにかく時間がかかるみたい。
It is the state-of-the-art method for gene sequencing but takes a lot of time.
遺伝子自体を読み込むのは1日くらいで早いが、その後の変異部分の特定、そして、その変異が何を意味しているのかの解釈が時間がかかる。
In fact, reading the genes takes just one day, but identifying the mutations and their interpretation takes a long time.
メインの解釈に2ヶ月。すべてのエクソーム領域はさらに2、3ヶ月。ふ～～。長い…
She said the interpretation of the most suspected mutations takes 2 months. And for the whole exome sequencing result takes another 2-3 months. Gosh... really takes long...
同病院で今まで検査をした人も3人のみ。その内、今のところ1人しか原因が特定できていないらしい。
And she also mentioned there have been 3 people who had the same test at the hospital, but only one of them found the root cause.
3分の1の確率…か…
So it is 1/3 chance...
この際確率なんて関係ないな。
Well, I don't care the probability at this point.
神様、お願いします。
God, please...
私たちに光を与えてください…
Give us the light...
これが原因究明の最後のチャンスなんです。
This will be the final chance to find out the root cause...
これで分からなければ、ただ暗闇が深くなるだけなんです。
If we miss this, our world gets darker and darker...
何でもいいんです…
Anything new is welcomed...
ちょっとした手がかりでもいいんです…
Even a tiny clue is good...
次につながるような何かを…
Anything for the better...
将来につながる何かを…
Anything for the future...
Leoを救う何かを与えてください…
Anything that could save Leo, so please...
We had a meeting today with a genetic consultant as a preparation for Leo's whole exome sequencing.
主に、エクソーム解析とは何か？という説明と、その検査によってわかる事、わからない事などを詳しく教えてくれた。
She mainly explained about what the test does and its limitations in detail.
そして、家族親戚などの病歴などの情報を集めて、さまざまな同意書にサインして終了。
And she collected the information on the possible inheritance of diseases in our family trees.
Leoの遺伝子検査の結果として、ママと共に、我々自身の遺伝子情報を知りたいという選択肢を選んだ。
My wife and I chose to know our own gene information as a result of Leo's gene sequencing.
まあ事前に予測してた通りかな？
Mostly, everything was what we expected.
このエクソーム解析。
Whole exome sequencing.
現在行われている最新の方法らしいが、とにかく時間がかかるみたい。
It is the state-of-the-art method for gene sequencing but takes a lot of time.
遺伝子自体を読み込むのは1日くらいで早いが、その後の変異部分の特定、そして、その変異が何を意味しているのかの解釈が時間がかかる。
In fact, reading the genes takes just one day, but identifying the mutations and their interpretation takes a long time.
メインの解釈に2ヶ月。すべてのエクソーム領域はさらに2、3ヶ月。ふ～～。長い…
She said the interpretation of the most suspected mutations takes 2 months. And for the whole exome sequencing result takes another 2-3 months. Gosh... really takes long...
同病院で今まで検査をした人も3人のみ。その内、今のところ1人しか原因が特定できていないらしい。
And she also mentioned there have been 3 people who had the same test at the hospital, but only one of them found the root cause.
3分の1の確率…か…
So it is 1/3 chance...
この際確率なんて関係ないな。
Well, I don't care the probability at this point.
神様、お願いします。
God, please...
私たちに光を与えてください…
Give us the light...
これが原因究明の最後のチャンスなんです。
This will be the final chance to find out the root cause...
これで分からなければ、ただ暗闇が深くなるだけなんです。
If we miss this, our world gets darker and darker...
何でもいいんです…
Anything new is welcomed...
ちょっとした手がかりでもいいんです…
Even a tiny clue is good...
次につながるような何かを…
Anything for the better...
将来につながる何かを…
Anything for the future...
Leoを救う何かを与えてください…
Anything that could save Leo, so please...
Category Encinitas Life
たまにSenaのことを書いておかないと…大きくなってから妬まれそう＾＾
I feel obligated to write about Sena because she will be complaining that I am writing only about Leo here when she is an adult.
ということで、もう3週間も前のことだが、Senaの3歳のバースデーパーティーを近くの公園でやりました。Moonlight BeachのすぐそばのCotton Wood Parkで。天気も良くてバッチリ！海風も心地よかった。
So about 3 weeks ago, we had Sena's 3-year-old BD party at a park nearby. The place is called Cotton Wood Park, right next to Moonlight Beach. It was a great weather with nice sea breeze!
いつも主役になれてないから、最初はなんだか恥ずかしそうだったけど、徐々に全開モードに。仲良しのお友達からもプレゼントをたくさんもらったね。特大ピザの前で満足そう＾＾
She is not used to getting this much attention, so she was shy at first, but gradually getting happy about it. She's got many presents from her friends too. So look at her happy smile and this big pizza!
叩いて割るのはちょっとと思い、くじ引きタイプのピニャータをセレクト。女の子はプリンセス大好き。
We chose this pinata with lottery since a regular one that kids beat to open is too violent for girls.
くじを引くと中からお菓子がどっと出てきて子供たちが拾うゲーム。たまたまSenaが当たりを引いて盛り上がりました。
And Sena won, all snacks came out, and kids enjoyed picking them up!
そしてクライマックスはこのバースデーケーキ。イチゴのムースのBDケーキです。
And finally, look at this birthday cake! Is a strawberry mousse case...
実はこれ。ママが2日がかりで完成させた力作！チョコレートでプリンセス部分を作ってます。これがビフォアー。
Made by my wife! It took two days to complete it. The princess part was made of chocolate and this is the beginning of her work.
で、これがアフター。
And this is after it was complete.
ママの努力の甲斐あってか大好評。
Everyone enjoyed the wonderful case. Great job, mom!
Senaもこれで3歳。これからもLeoと仲良くね。
Sena is now 3 years old. Keep having fun with Leo!
そして、そろそろイヤイヤ期、終わってください（涙
And we are hoping that her saying "no, no" to anything will end soon :-)
I feel obligated to write about Sena because she will be complaining that I am writing only about Leo here when she is an adult.
ということで、もう3週間も前のことだが、Senaの3歳のバースデーパーティーを近くの公園でやりました。Moonlight BeachのすぐそばのCotton Wood Parkで。天気も良くてバッチリ！海風も心地よかった。
So about 3 weeks ago, we had Sena's 3-year-old BD party at a park nearby. The place is called Cotton Wood Park, right next to Moonlight Beach. It was a great weather with nice sea breeze!
いつも主役になれてないから、最初はなんだか恥ずかしそうだったけど、徐々に全開モードに。仲良しのお友達からもプレゼントをたくさんもらったね。特大ピザの前で満足そう＾＾
She is not used to getting this much attention, so she was shy at first, but gradually getting happy about it. She's got many presents from her friends too. So look at her happy smile and this big pizza!
叩いて割るのはちょっとと思い、くじ引きタイプのピニャータをセレクト。女の子はプリンセス大好き。
We chose this pinata with lottery since a regular one that kids beat to open is too violent for girls.
くじを引くと中からお菓子がどっと出てきて子供たちが拾うゲーム。たまたまSenaが当たりを引いて盛り上がりました。
And Sena won, all snacks came out, and kids enjoyed picking them up!
そしてクライマックスはこのバースデーケーキ。イチゴのムースのBDケーキです。
And finally, look at this birthday cake! Is a strawberry mousse case...
実はこれ。ママが2日がかりで完成させた力作！チョコレートでプリンセス部分を作ってます。これがビフォアー。
Made by my wife! It took two days to complete it. The princess part was made of chocolate and this is the beginning of her work.
で、これがアフター。
And this is after it was complete.
ママの努力の甲斐あってか大好評。
Everyone enjoyed the wonderful case. Great job, mom!
Senaもこれで3歳。これからもLeoと仲良くね。
Sena is now 3 years old. Keep having fun with Leo!
そして、そろそろイヤイヤ期、終わってください（涙
And we are hoping that her saying "no, no" to anything will end soon :-)
