His Beautiful Smiles

Searching Cure for Progressive Degenerative Disease

 

朝歩こうか?(Wanna walk in the morning?)


Edit Category つぶやき (Tweets)
とにかくなるべく書こう。
Let's write something.

なんでもいいから…
Anything is fine...

毎日じゃくてもいいから。
OK if not everyday.

Leoの状態の走り書きでもなんでもいいから。
Just recording Leo's condition or anything is fine.

今日のLeoは比較的にしっかりしてたかな。
Leo was relatively stable today.

左足のクロスも気持ちマシ。
His left leg crosses less than usual.

二日前に近所を3キロぐらい歩行器であるいたからかな?
He walked in the gait trainer 2 miles around our neighborhood 2 days ago.

昨日一週間ぶりに大が出たし、今日もシャワー中に大が2回も!
He made No. 2 yesterday, and No.2 twice today while taking a shower!

一緒に入っていたママとSenaからのヘルプ要請でパパがピックアップ!のドタバタ劇。
My wife and Sena were with him and they screamed for my help, so I ran upstairs and picked them up.

それでも二日連続で出たことが嬉しかったし、やっぱり、便秘には運動。あれくらい歩かせないとダメだな~と実感。
It was hectic, but my wife and I were so glad to see them two days in a row. And we felt that more exercise is needed to solve his constipation issue and also thought we need to make him walk even more.

Leo。
Leo.

これから毎朝学校前に一緒に歩こうか?
Do you wanna walk with me every morning before school?

その前に早く起きないとね。
Well, but you need to wake up earlier!

さすがに毎朝9時起床は遅すぎだね。
Waking up at 9 is too late!

今日の日の出は5:40。
Sunrise today is 5:40!

鳥たちのさえずりと、フレッシュなシーブリーズの中を歩くのは気持ちいいよー。
It feels good to walk with birds singing in the fresh sea breeze.

ちょっとずつ早起きしていこうね(^^)
So let's wake up a bit earlier from now on :-)

子供の成長って…(About Growing up...)


Edit Category つぶやき (Tweets)
先月の母の日のこと。
On the Mother's day last month.

最近は仕事が忙しく、LeoとSenaの面倒をほぼ一人でみてくれているママ。
I have been busy at work lately, so my wife is taking care of Leo and Sena all by herself.

そんなママに何をプレゼントしようかな~と悩む。
So I could not decide a Mother's day gift for her.

で、やっぱりモノよりも時間かな~と思い、ママに子供なし完全フリーな一日をプレゼント。
Then, I decided to give her TIME rather than stuff, so I gave her a full kids free day.

ということで、LeoとSenaをつれてお決まりのSea Worldへ。
So we went to the Sea World, as usual.



それにしてもこの笑顔。何度来ても、やっぱり大好きみたい。
We've been there just so many times, but still look at their happy face! Yes, they love it.

入場してすぐ、最近できた魚に触れるところで、Leoと一緒に小さいサメや白いカブトガニなんかに触れる。
Right by the entrance, there was a new pools where kids can touch small sharks and white horseshoe crabs.

Leoはぐいぐい手を突っ込み、触ったあと、「気持ちわる~い」的な顔をするが、でも大喜び。
Leo was really into that but making "ew" face after touching them. He really enjoyed it.

一方のSenaは怖くて近づいてみることもできず、その場から早く立ち去ろうと必死で号泣。
On the other hand, Sena was so scared that she could not even come close to the pool and cried like crazy in order to leave there.

すぐそこを離れて、いつものように丸一日、いろんなショーや動物を見て回る。
So we left the pools and went to the shows and saw the animals all day as usual.

でも、ここでSenaが避けるもう一つ鬼門が!
Then we passed another place where Sena always tries to avoid!

それはセサミストリートのエルモと一緒に写真を撮るブース。
It is the place where you can take pictures with Elmo from Sesame Street.

Senaは基本的に着ぐるみが怖い。
Sena basically does not like those characters in costume.

だから、それがいると近づこうともせず、10メートル以内に来ようものなら号泣絶叫で大暴れ。
So she usually stays away from there and once it is closer to her, she usually screams, cries, and goes crazy.

が、今までのパターン。
That was the pattern before.

しかし、そのときは、
But this time, it went something like:

パパ: 一緒に写真とってみる?
Sena: うん。もうおねーちゃんだから写真一緒に撮ってみる!

Dad: Do you wanna take a picture with you and Elmo?
Sena: Yeah. I am grown-up now, so I can be in the picture with him!

と宣言。
What a declaration!

列で待っている間も怖そうにしてたが、じっと前の子供たちの様子を観察しながら、下を向いて自分を鼓舞。
She looked scared while waiting in line, observing carefully the kids in front of us, and was looking down and trying to encourage herself.

そして、とうとう生まれて初めてエルモと一緒に写真をとることに成功!
And... yes, finally she did it! For the first time being in the picture with Elmo!

「怖くなかった~!楽しかった~!」
"It was not scary! It was fun!"

満面の笑みとともに、Senaの成長を実感し、ちょっと感激。
Her smile with full of satisfaction made me feel that she's grown up really, so I was a bit moved.

そして、今度は帰り際。
And another thing when we were on our way back to the exit.

また、あの魚に触れるブースを通るとき、「Sena、サメ触ってみる!」と自分から主張。
When we were passing the pools with fish, Sena suddenly claimed by herself "I want to touch the sharks!"

恐る恐るだが、自分から手を入れて、小さなサメについに触れる。
She looked scared again but she finally put her hands in the water and touched a little shark!

「うわ~。ざらざらしてるね~」と、これまた満面の笑み。
"Wow! The skin feet rough!" again a big smile followed.

たった一日で出来なかったことが2つ出来るようになったSena。
She overcame two things in a single day that she was not able to do before.

「子供の成長」を実感し、素直に感動する。
Again, I could not help but feel her growth and very moved by that.



でも同時に、そこではっと気づく。
However at the same time, I realized one thing...

正直、こんな風に「子供の成長」を実感したのは、実は初めてのような気が…
Honestly, this is the first time I felt our kids' growth.

今日みたいに、以前できなかったことが少しずつ出来るようになっていく妹のSena。
Like what happened today, Sena is becoming able to do what she was unable to do before, little by little.

そして、その隣で、以前できてたことが、少しずつ出来なくなっている兄のLeo。
And next to her is her brother Leo who is becoming unable to do what he was able to do before, little by little.

Leoはそんな妹を見てどう思っているんだろう…
I wondered what Leo is thinking about her sister becoming able to do anything...

そして、そんな自分を見てどう感じているんだろう…
And also wondered what he is feeling about himself, becoming unable to do anything...

感動と共にちょっと複雑な心境になる。
I was moved but felt sad at the same time.

そんな一日だった。
It was a day like that.

Leo、Sena。

この先、色んなことが待っているけど、お互いに支えあって、これからも生きていこうね。
There will be so many things waiting for us, but let's support each other and get it going.

兄妹で仲良く…
With brother and sister together...


そして、家族みんなで力を合わせて…
And with a whole family together...

悪化が止まらない...(Getting Worse...)


Edit Category つぶやき (Tweets)
うーん、なんだかな~。
Well...

ここ数ヶ月、またLeoの症状の悪化が顕著だ。
Leo's symptoms have obviously become worse in the last several months.

というか、大きな流れで言えば、やはり少しずつ悪化している。
Or I would say the general trend has not changed and the symptoms have gotton worse little by little over time.

認めたくないけど、それが事実だ。
I don't want to admit it, but this is the fact, unfortunately.

左脚のツッパリが強くなってきて、ピーンとつま先までまっすぐ。
His left leg has become more spastic and always straight and tight to the toe.

大人が戻そうとしても戻らないくらいの力が入っている。
It is too tight that even adults cannot make it bend or relaxed.

さらにその左脚がよく右脚の前にクロスし、つま先すら地に着かず宙に浮いた状態がよくある。
And the left leg goes across the right leg and stays in the air without the toe touching on the ground.

だから基本的には右脚一本に体重が載っている状態になり、歩行器に入れてもうまく歩けなかったりする。
So his weight is always on the right leg only and make him unable to walk well even with the gait trainer.

左脚に体重が乗らないから右脚が前に出ない。
Since he cannot put his weight on his left leg, the right leg of course does not come forward.

歩けないから体全体に負荷がかからず、体幹が緩むばかり。
And since he cannot walk, his trunk gets looser and looser with not much training on the trunk.

今はまるで無脊椎動物のように体がぐにゃぐにゃ。
Right now, his body seems like that of an invertebrate animal. Not much strength on his entire body....





座っている姿勢も以前にも増して保てていない。
Sitting is even harder for him now.

食事のときは、私かママが左側に座り、Leoの胸を左手で支え、首の後ろに右腕を回して頭を支え(後ろから羽交い絞めのような感じ)、右手にスプーンを持って食べさせている。
When eating, either his mom or me sits just left of his chair, support his chest with our left hand, and support his head with our right arm surrounding from behind (almost locking his head), and carry food with a spoon with the rightg hand.

噛む力も、飲み込む力も正直落ちている。
He is having hard time biting and swallowing, honestly speaking...

だから、よく食べ物がのどにつまって苦しそう。
So the food often gets stuck in his throat and he gets suffocated a bit.

いろんなことをしているけど、結果が出ない...
We've been doing everything we can, but the results are not good so far...

毒を出さなきゃいけないのに、便秘は相変わらず...
He needs to be detoxed but the constipation prevents it from happening.

最近は便を出す力まで弱っているのか、まったく踏ん張れず、1週間以上の便秘もザラで浣腸のお世話になることも。
And his trunk is too loose to push it out nowadays and often gets constipated over a week, so we end up using an enema.

浣腸しても全部出切ってないような感じだ。
However even after the enema, everything does not seem to come out.

調子がいいときは長い便がストン、ストンと出てたのに、今はゴルフボールが5,6個で終わり。
When in good condition, his stool was long and decent, but now just 5 to 6 golf ball-sized ones only.

ありとあらゆることをやってるんだけどな~。
We have been trying everything to solve this, but...

試行錯誤の日々。ほんとそう(涙
Really a never-ending try and error...

Leoも自分の状況がわかっているのだろう。 
Leo knows his situation too.

しかめっ面をしているときがよくある。
He does not seem happy lately.

いやだよね...
I know you don't like it...

つらいよね...
And it is tough, I know...

ほんと、助けてあげれてなくてゴメンな...
Very sorry that we have not yet saved you from this situation...

パパもママも諦めないでがんばるから...
Mom and I will never give up...

一緒にがんばっていこう..
So let's keep trying together...

な、Leo。
Right, Leo?



軟車輪 (SoftWheel)?


Edit Category つぶやき (Tweets)
最近はイスラエル発のベンチャーが全盛らしい。
I often hear the news nowdays that Israel ventures are doing well.

これもイスラエル発。
This is also from there.

車輪自体がクッションで階段でもどこでも行けるという優れもの。

The wheels themselves have cushions that can go down even stairs.



Leoももう少し体幹と手足のコントロールがきけば、こういうタイプの車椅子にも一人で乗れるのにな~。

I wish Leo could ride a wheelchair like this with more stability in his trunk and better coordination with his arms and legs. But righy now I have to admit that he will have hard time in doing so by himself...

いまのところは、電動の車椅子も少し厳しい感じ…ジョイスティックの操作は細かい手の動きが必要だからね~…

Even sn electric wheelchair is hard for him.., since he cannot grab the joy-stick with fine control.

でも、何はともあれ、この車輪は我々、介助側にもやさしいはずで◎。
硬い車輪は押す方も疲れます。

But these wheels should ease our phusical effort to support him. Pushing something with rigid wheels is simply tiring.

まだまだ先だろうけど、まずは電動車椅子。できれば自分の手で押して。

Well, it may not happening soon, but let's hope we can manage the electric one first, then the one with your own push by your hands...

そして、できれば自分の足で…
And ultimately by your own feet..

まあ、ひとつひとつ、あせらずに気長にやっていこう。
Don't rush, let's go slowly, one by one...

ずっとみんなでサポートするから…
We are always with you side-by-side.

な、Leo。
Right, Leo?




SAKURA! (Cherry Blossom!)


Edit Category つぶやき (Tweets)
3週間以上の日本ステイから先週戻ってきた。
We are back from Japan last week after 3+ weeks of stay there.

長いようであっという間に過ぎた3週間。書くことありすぎるから、少しずつアップしていこうと思う。
It felt long at first but went fast. Too much stuff to write about, so I will put it one by one.

まずは桜から。
First, yes, SAKURA (Cherry Blossom)!

海外に長くいると正直自分のアイデンティティーを失いかける。
Honestly, living abroad this long makes me feel that my identify is lost.

それを強く呼び起こしてくれるものがSAKURA。
But SAKURA immediately brings it back to me.

IMG_3276.jpg

日本人でよかったと思う瞬間。
And makes me feel that I am Japanese!

IMG_3275.jpg

桜のトンネルを通って近くの公園へ。
We went to the park nearby through the tunnel of SAKURA.

IMG_3283.jpg

Leoも歩行訓練気で散歩。気持ちよさそうだ。
Leo walked with the gait trainer. He looked fun!



さすがにアメリカ製の歩行器。日本に持ち込むとデカさが際立つ感じ。
We brought the gait trainer from the States. So it looked even bigger in Japan (everything is tiny there).

だから結構ジロジロとみんなに見られたけど、中には頑張れーって応援してくれる人や、「この靴、僕のと一緒だね」と言い寄ってくる男の子なんかがいて、Leoも楽しそうだったかな?
So people were surprised and gazed at him, but there were some people who cheered him up like "good job! keep going!" and some kids came to him saying "your shoes are the same as mine, cool!". So Leo enjoyed his walk there.

やっぱりこの時期はいいね!
It is the best season in Japan!

また来日して、こんな風に満開の桜の下を歩こう!
Let's fly over here and walk under the SAKURA trees like this!

いつまでも...
Again and again and again...

な、Leo?
Right, Leo?



 
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プロフィール (Profile)
カリフォルニア・サンディエゴ郊外在住。失調症の息子のことを中心に、日米の障害児事情の比較や、ふと思ったことなどを書いてます。コメント、TBフリーです。

From San Diego, CA. Topics on my son with ataxic CP, US-Japan comparison on physically-challenged children, and just some tweets from life. Comments welcome.

leosena

Author:leosena
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