Category つぶやき (Tweets)
今日のLeoの身体はぐにゃぐにゃ。おなかに全く力が入らないし、腕、脚の筋肉もフニャフニャ。ウォーカーで練習してもフラフラ。自分で今日は調子が悪いのが分かってるのか、また涙目で無言でしくしく泣いていた。強く抱きしめるしかできなかった。視界が潤んでいた…
Today, Leo's entire body is very loose. The muscle tone of trunk, arms and legs are very bad and does not have any strength overall. Practice with walker went not well either. He understands his body is out of control by himself today, so he often looked down with his eyes full of tears. I just couldn't help but hug him... I had a blurred syesight, too...
今、Leoはグルテンを含む小麦が入ったもの、牛乳が入ったものをたべさせてない。せっかく薬で葉酸を補っても、その活動を阻害するという論文が最近よく発表されていて、取りあえず試している。確かに、以前のように身体がぐにゃぐにゃなことがなくなったような気がするが、今日は久しぶりにその状態。関連は分からないが、二日前に学校でクッキーを食べたようだ。過去の経験から、大体二日後にこうなる。先生たちも忘れてたのか、もう少し徹底して欲しいものだ。相変らずの適当さに結構うんざり。
Leo is now on gluten free diet, free from food with basically wheat. Also he is free from cow milk. We have been trying this since there are recently several medical articles indicating that they block the folate receptors accepting the folic acid he is taking now. It seems like he is better controlling his body with this diet a little bit, but not yet quite sure if it is 100% effective compared with the baseline. But today is definitely one of the worst. I heard from my wife that he had a cookie 2 days ago at school. In the past, we know his body gets very loose usually 2 days after he took gluten or milk. So I guess the teachers may have forgot about the diet(?). I don't know, but am hoping that does not happen again.
でもがんばろうね、Leo!
There are many things like that here, but let's moving on, Leo, OK?
Today, Leo's entire body is very loose. The muscle tone of trunk, arms and legs are very bad and does not have any strength overall. Practice with walker went not well either. He understands his body is out of control by himself today, so he often looked down with his eyes full of tears. I just couldn't help but hug him... I had a blurred syesight, too...
今、Leoはグルテンを含む小麦が入ったもの、牛乳が入ったものをたべさせてない。せっかく薬で葉酸を補っても、その活動を阻害するという論文が最近よく発表されていて、取りあえず試している。確かに、以前のように身体がぐにゃぐにゃなことがなくなったような気がするが、今日は久しぶりにその状態。関連は分からないが、二日前に学校でクッキーを食べたようだ。過去の経験から、大体二日後にこうなる。先生たちも忘れてたのか、もう少し徹底して欲しいものだ。相変らずの適当さに結構うんざり。
Leo is now on gluten free diet, free from food with basically wheat. Also he is free from cow milk. We have been trying this since there are recently several medical articles indicating that they block the folate receptors accepting the folic acid he is taking now. It seems like he is better controlling his body with this diet a little bit, but not yet quite sure if it is 100% effective compared with the baseline. But today is definitely one of the worst. I heard from my wife that he had a cookie 2 days ago at school. In the past, we know his body gets very loose usually 2 days after he took gluten or milk. So I guess the teachers may have forgot about the diet(?). I don't know, but am hoping that does not happen again.
でもがんばろうね、Leo!
There are many things like that here, but let's moving on, Leo, OK?
