Oxygen had been suddenly decreased last night again, and we rushed for suction. It happened about 2 hours after he fell into sleep. I am worried about this to happen again… We spoke to Hajime that we would do suction every 2 hours through the night as the therapist suggested. He consented and smiled, even though it shall keep bothering him and not allows him to have a deep sleep.
It is not confirmed yet when we start this, but hopefully this helps Hajime keep breathing.
Today’s PT was conducted in combination with ST, and the speech-therapy with staying on a wheelchair started. We brought a stand from home to hold “tobii” and use it. It worked out really good!
By catching Hajime’s gaze, this can make a long sentence and even speak over. Now, we make good use of the eye/ gaze system. Hopefully, we can utilize this system better after some practice.
Hajime played the video-game afternoon. He can play with his toes. This is really amazing. As you may know, there are many buttons laid on the Xbox’s controller, which is small and the palm top size.
Without looking at these buttons, he can control only by relying on his toe’s sense. He also changed the button setting/ functions via the set-up menu to make a good fit to him.
In the evening, his daddy and brother came to the hospital after the school and Ryo & Hajime played together. I am very impressed.
There is one concern… His heart rate was increased up to 130 when he played the game and very much excited… So I cannot let him play before he goes to bed…
In these days, Hajime is getting much better to use his toes.
I saw the blog written by ALS patient a while ago and learned the blog was updated only by toes still working. Today, Hajime is doing this! More than anything else, I am so happy that Hajime now has something interested that shall help him keep energized.
Translated by RM & YM