The Toy He Wants

Quite a few days have passed since New Year's Day.

Hajime is doing well.

But, recently, the color (of the secretion) and odor around his trache is not good again. So we had to take another sample and turn it in to the lab.
If they find an infection again, we will have to give him antibiotics, so that is another thing to worry about.

Hajime has been into Nerf guns recently, so he's been watching a lot of YouTube about them.  And it seems like there is a particular model that he wants, so he has been telling us with the search screen to hurry up and get it for him.



This YouTube search screen that uses the XBox has been extremely helpful in our communication with him.  Our current day nurse has been talking to Hajime using this search screen.  He is able to express his feelings.  He tells us what he wants us to do or how he did not like something.  I am so happy we can do this.
It is extremely important that Hajime be able to express his feelings and his wishes.  This was possible thanks to our day nurse.

Tomorrow, the 8th, is Hajime's 20th birthday.
But my husband will be busy all day at a conference, so we are planning to have his birthday party on Saturday, the 12th.  It will be at our house and open to everyone.  We would love to have you come and wish Hajime a Happy Birthday, so if you have a chance, please come anytime from noon until nighttime.
I will post our address and other information, so please don't hesitate and drop by!


(translated by MS)

Happy New Year

Happy New Year!

This past year, many people read this blog and many also gave me feedback.  I am deeply grateful.
Please also continue to remember us this year.

So many things happened last year.
Last New Year's, Hajime had been released from the hospital just a few months before, so we were still getting used to a lot of things.  We did not have a nurse, so I think my husband and I were physically and mentally tired from taking care of him by ourselves.
I remember feeling disappointed when I went to a Japanese store to buy New Year's food, and there was hardly anything left.

So this year, thanks to all of you, we were able to have a good New Year's Day.  The nurse took a day off, so we were relax with just our family.

Hajime watched the Rose Parade telecast over and over.  He was also able to see his favorite B2 Bombers on TV.
Lately, Hajime has not wanted the curtains opened, so I asked him if he was feeling down about something.
When he was still healthy, he used to watch the Rose Parade every year.
But now, when his younger brother Ryo talks about going to the parade,  all Hajime can do is wish he could go too.  I think that is why he was a little depressed.
I think he starts thinking and remembering when he sees the broadcast.
I think he has some strong feelings about how he used to spend time together with everyone at church.

It is hard to realize these things.
He knows that he can't participate in the activities that normal kids his age can, and he still feels some longing for those times when he was able to.

Holidays are fun for healthy people, but they are complicated for people like Hajime who cannot move or eat or speak.

We are looking forward to the day that God will allow Hajime to have a real holiday.


(translated by MS)