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Searching Cure for Progressive Degenerative Disease

 

悪化が止まらない...(Getting Worse...)


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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?



Newer Entry子供の成長って…(About Growing up...)

Older Entry軟車輪 (SoftWheel)?

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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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