Category つぶやき (Tweets)
パパ、風邪でダウン。仕事が立て込んでいる中、会社を早退して自宅療養。鼻水、咳、悪寒がひどい。Leoは抗生物質のおかげか、中耳炎も気管支炎も大丈夫みたい。まだ本調子じゃないみたいだけど…
I just left the office early today due to bad cold. Just too much stuff to do at work but nothing is more important than health. Leo seems OK, although not feeling perfect. I guess the antibiotics is working now.
昨日学校のジェニファーさんと話したあと、家でもLeoに自分でトライする機会を増やそうと決意。さっきハイハイして自分でベッドに登る見本を見せたら、悲しそうな目で、「できないって分かってて何でそんなことしなきゃいけないの～。もうイヤだよー！」と訴えている感じで泣いていた。
After discussion with Jennifer yesterday, I decided to create more opportunities for Leo to try everything by himself. So I demonstrated how to crawl to the bed and climb there. Leo was looking at me and his eyes in tears, almost felt like saying "you know I can't do it, right? why are you asking me to do that, dad?"
親として、障害児が将来自立した生活が送れるように、心を鬼にして、それでもさせなきゃいけないのは分かってるけれど…でも、今日はできなかった。ただただ、ゴメンね～って言って抱きしめるしか出来なかった。涙がとまらなかった。
As a parent of a child with disability, I know I need to be tough on him so that he can have an independent life as much as possible. But when I looked at his sad eyes, I just could not do it. The only thing I could do is hold him tight, saying sorry, sorry, and sorry... again. I couldn't stop the tears in my eyes.
もっと強くならなきゃ…
反省の毎日…
I need to be stronger. I just need to...
Lots of things to think about everyday...
I just left the office early today due to bad cold. Just too much stuff to do at work but nothing is more important than health. Leo seems OK, although not feeling perfect. I guess the antibiotics is working now.
昨日学校のジェニファーさんと話したあと、家でもLeoに自分でトライする機会を増やそうと決意。さっきハイハイして自分でベッドに登る見本を見せたら、悲しそうな目で、「できないって分かってて何でそんなことしなきゃいけないの～。もうイヤだよー！」と訴えている感じで泣いていた。
After discussion with Jennifer yesterday, I decided to create more opportunities for Leo to try everything by himself. So I demonstrated how to crawl to the bed and climb there. Leo was looking at me and his eyes in tears, almost felt like saying "you know I can't do it, right? why are you asking me to do that, dad?"
親として、障害児が将来自立した生活が送れるように、心を鬼にして、それでもさせなきゃいけないのは分かってるけれど…でも、今日はできなかった。ただただ、ゴメンね～って言って抱きしめるしか出来なかった。涙がとまらなかった。
As a parent of a child with disability, I know I need to be tough on him so that he can have an independent life as much as possible. But when I looked at his sad eyes, I just could not do it. The only thing I could do is hold him tight, saying sorry, sorry, and sorry... again. I couldn't stop the tears in my eyes.
もっと強くならなきゃ…
反省の毎日…
I need to be stronger. I just need to...
Lots of things to think about everyday...
Category 病院 (Hospital)
昨日の夜、ずっとLeoの夜泣きがひどかった理由はなんと、中耳炎と気管支炎。夜中トイレに連れて行ったら、左耳を数回指差すので、もしやと思って午前中にお医者さんに連れて行ったら、気管支炎のおまけつき。昨日一生懸命訴えてたんだね。ごめんねー。本当に分かってあげられてなくて（涙）。最近ずっと鼻水と咳がひどかったから、そこから来たかな？しっかりお薬のんで治そうね。ちなみにアメリカの薬は飲むタイプの抗生物質。42種類のフレーバーがあるらしい。何も言わずにもらったのはイチゴ味？尋常じゃなくまずい… Leoもまずそうな顔してたな。ははは、、、
今日はあと学校のジェニファー先生と電話でお話。1年間の成果をレビューするミーティングの打ち合わせだったんだけど、成果どころか、この一年間で歩けなくなってしまったから、先生たちもどうしようってことでした。今年から常時Leoを見てくれる人をつけてくれるように手配中とのこと。あと様々な器具を注文したからねとのこと。本当にいろいろ感謝してもしきれないほど、学校の先生たちはよくしてくれる。なんとか、すこしでもよくなるようにがんばろうね。
The reason why Leo kept crying last night turned out that he's got ear infection and bronchitis. He pointed his left ear when I took him to the bathroom, so my guess was right! but never thought of bronchitis... He was trying to tell me about it and stupid me... I could not figure that out. I am very sorry, Leo (tears...). He has been coughing hard and had runny nose lately, so it may have come from there. Let's make sure to have the medication twice a day. By the way, the medication is a liquid type antibiotics and you can choose a flavor out of 42 kinds. I did not say anything, so I got strawberry flavor, which tastes nasty! Leo did not like that, of course.
Today I also talked to Jennifer at school about his annual review meeting next month. Well, he became unable to walk or stand by himself, so nothing has improved actually or rather worsened significantly. So the teachers are also wondering what to do next. They are very supportive and we cannot thank them enough. They are planning to have an aid worker for his safety and also obtaining several support equipment that he needs at school. So Leo. We are all hoping you'll get better a bit, so let's work together, ok?
今日はあと学校のジェニファー先生と電話でお話。1年間の成果をレビューするミーティングの打ち合わせだったんだけど、成果どころか、この一年間で歩けなくなってしまったから、先生たちもどうしようってことでした。今年から常時Leoを見てくれる人をつけてくれるように手配中とのこと。あと様々な器具を注文したからねとのこと。本当にいろいろ感謝してもしきれないほど、学校の先生たちはよくしてくれる。なんとか、すこしでもよくなるようにがんばろうね。
The reason why Leo kept crying last night turned out that he's got ear infection and bronchitis. He pointed his left ear when I took him to the bathroom, so my guess was right! but never thought of bronchitis... He was trying to tell me about it and stupid me... I could not figure that out. I am very sorry, Leo (tears...). He has been coughing hard and had runny nose lately, so it may have come from there. Let's make sure to have the medication twice a day. By the way, the medication is a liquid type antibiotics and you can choose a flavor out of 42 kinds. I did not say anything, so I got strawberry flavor, which tastes nasty! Leo did not like that, of course.
Today I also talked to Jennifer at school about his annual review meeting next month. Well, he became unable to walk or stand by himself, so nothing has improved actually or rather worsened significantly. So the teachers are also wondering what to do next. They are very supportive and we cannot thank them enough. They are planning to have an aid worker for his safety and also obtaining several support equipment that he needs at school. So Leo. We are all hoping you'll get better a bit, so let's work together, ok?
Category つぶやき (Tweets)
今夜中の1時。今日はLeoの夜泣きがひどい。風邪でたんがノドに詰まっても、筋肉の
コントロールが出来ず、あまり上手くせきができないからか…お腹に力が入らないから、慢性的に便秘でガスが溜まっているのか…
It is 1:00 AM now. Leo keeps crying. Maybe nasal congestion? Phlegm? Constipation? Gas? Because of CFD (Cerebral Folate Deficiency), he has hard time getting phlegm out, controlling coughing, and due to muscle weakness in the trunk area, he is always constipated.
言葉が出ないから、
ただひたすら泣いて訴えるしかないんだろうけど
ホント、分かってあげられなくてゴメン…
子供が一生懸命泣いて訴えてるのに
分かってあげられない。こういう時が
正直つらい。ただただこっちも
泣いて抱きしめるしかできない。
もうちょっと言葉がでれば分かるんだけど…
少しづつ練習していこうね。
But the worst is he cannot tell us what's wrong verbally and the only way is just crying hard. It is just too tough to see your son in pain, but you don't know why exactly he cannot talk. The only thing I can do now is to hold him tight and cry together, repeatedly saying sorry, sorry, and sorry... Well, Leo. We need to practice more together, so let's reduce the situations like this little by little, ok?
コントロールが出来ず、あまり上手くせきができないからか…お腹に力が入らないから、慢性的に便秘でガスが溜まっているのか…
It is 1:00 AM now. Leo keeps crying. Maybe nasal congestion? Phlegm? Constipation? Gas? Because of CFD (Cerebral Folate Deficiency), he has hard time getting phlegm out, controlling coughing, and due to muscle weakness in the trunk area, he is always constipated.
言葉が出ないから、
ただひたすら泣いて訴えるしかないんだろうけど
ホント、分かってあげられなくてゴメン…
子供が一生懸命泣いて訴えてるのに
分かってあげられない。こういう時が
正直つらい。ただただこっちも
泣いて抱きしめるしかできない。
もうちょっと言葉がでれば分かるんだけど…
少しづつ練習していこうね。
But the worst is he cannot tell us what's wrong verbally and the only way is just crying hard. It is just too tough to see your son in pain, but you don't know why exactly he cannot talk. The only thing I can do now is to hold him tight and cry together, repeatedly saying sorry, sorry, and sorry... Well, Leo. We need to practice more together, so let's reduce the situations like this little by little, ok?
Category CFDとは (About CFD)
約9ヶ月ぶりのアップ。
Leoは、たった一年で歩くどころか、自分で立てなくなった。
その間、日本とアメリカで様々な検査をして分かったこと。
それは、Leoが脳葉酸欠乏症（中枢系葉酸欠乏症, Cerebral Folate Deficiency, CDFとも言われる）であるということ。
この病気は脳、脊髄を含む中枢系の葉酸値が極端に低くなる病気で原因は不明。
葉酸値が低いと脳からの信号が体全体に伝わりにくくなり、結果、体全体のコントロールができないくなる。
症状としては脳性まひの一種である運動失調に近い。
Updated for the first time in about 9 months.
Leo has become unable to stand up by himself in the last year, so naturally walking is impossible now.
He went through all kinds on diagnostic tests in the U.S. and even in Japan.
What we found is that he has Cerebral Folate Deficiency (CFD).
The cause of this very rare disease is, in short, the extremely low level of folate acid (5-methyltetrahydrofolate or 5-MTHF)in the brain/spinal fluid, which prevents signals to go normally from brain to the peripherals or vice versa. The symptom itself is those of cerebral ataxia, which is another diagnosis that he has too.
Leoは、今は何をするにも介助が必要。でも毎日リハビリがんばってる。
Leo now needs 24/7 support but he is trying hard everyday, practicing how to stand up and walk at physical therapy, how to finely control the muscles at occupational therapy, how to speak at speech thrapy, etc.
自分は最大限がんばっているだろうか？
Leoのつらさを十分分かってあげられてるだろうか？
When I look at him, I always ask myself "am I trying hard like Leo?" or "am I really understanding what he is feeling when going through this tough situation?"
なんだかそうじゃない気がする。
もっとがんばらないと。Leoのように。
I feel like I am not.
I need to try harder, much like Leo.
Leoは、たった一年で歩くどころか、自分で立てなくなった。
その間、日本とアメリカで様々な検査をして分かったこと。
それは、Leoが脳葉酸欠乏症（中枢系葉酸欠乏症, Cerebral Folate Deficiency, CDFとも言われる）であるということ。
この病気は脳、脊髄を含む中枢系の葉酸値が極端に低くなる病気で原因は不明。
葉酸値が低いと脳からの信号が体全体に伝わりにくくなり、結果、体全体のコントロールができないくなる。
症状としては脳性まひの一種である運動失調に近い。
Updated for the first time in about 9 months.
Leo has become unable to stand up by himself in the last year, so naturally walking is impossible now.
He went through all kinds on diagnostic tests in the U.S. and even in Japan.
What we found is that he has Cerebral Folate Deficiency (CFD).
The cause of this very rare disease is, in short, the extremely low level of folate acid (5-methyltetrahydrofolate or 5-MTHF)in the brain/spinal fluid, which prevents signals to go normally from brain to the peripherals or vice versa. The symptom itself is those of cerebral ataxia, which is another diagnosis that he has too.
Leoは、今は何をするにも介助が必要。でも毎日リハビリがんばってる。
Leo now needs 24/7 support but he is trying hard everyday, practicing how to stand up and walk at physical therapy, how to finely control the muscles at occupational therapy, how to speak at speech thrapy, etc.
自分は最大限がんばっているだろうか？
Leoのつらさを十分分かってあげられてるだろうか？
When I look at him, I always ask myself "am I trying hard like Leo?" or "am I really understanding what he is feeling when going through this tough situation?"
なんだかそうじゃない気がする。
もっとがんばらないと。Leoのように。
I feel like I am not.
I need to try harder, much like Leo.
