His Beautiful Smiles

Searching Cure for Progressive Degenerative Disease

 

DMOスーツ


Edit Category リハビリ (Rehab)
今日LeoのDMOスーツが届いた。



症状に合わせてライクラ生地をカットし、縫い目でしっかりした姿勢を保持させる。薄いウエットスーツのような感じかな?

これで体幹をサポートして、脚の付け根の亜脱臼が良くなるれば、手術なんてしなくて良くなる!

歩行器で脚がクロスしないようなパーツも来たしね。

DMOで体幹が少し安定するから、また一緒にシーワールド内を沢山歩こう!

な、Leo?



野球リハビリ(Baseball Rehab)


Edit Category リハビリ (Rehab)
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?

はじめてのお灸(First Moxibustion)


Edit 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.

スピーチの先生(Speech Therapist)


Edit Category リハビリ (Rehab)
SenaがLeoにスピーチの仕方を教えてます。
Sena doing speech therapy for Leo.



スピーチの練習のベストパートナー。
The best partner for speech practice.

ありがとね。Sena!
Good job, Sena!


最初の車イスと歩行訓練器(First Wheelchair and Gait Trainer)


Edit 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?
 
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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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