Feb 17, 2011


We are going to the ALS clinic at UCLA.

With the help from MDA, we went to the ALS clinic at UCLA.
It went over one hour more than the scheduled time.
We could meet all different types of doctors then were consulted.
I was glad we went.

OPT, SPT, Main Dr., Breathing Dr.,

Weight : 105.5 lb
Height : 5' 6

We were told to think about sufficient nutrition by the speech therapist.
Hajime needs 2200kcal for a day.
We need to choose highly nutritious foods and he needs to eat every three hour
A gastrostomy tube was recommended.
It is up to Hajime when to have a surgery for it…but…

A respiratory doctor checked his breathing capacity.
Normal rate is 80 to 120%, but Hajime's is only 58%.
It seems his breathing is weakening.

We have the next appointment in May.

Translated by Ai Hongo

Feb 1, 2011

ALS Clinic 2nd Visit

Last Thursday, we visited ALS Clinic.

Members of the support group from our church came along this time,
so we were five of us all together.

First, we saw a speech therapist.
Eating and drinking were checked out by eating some food and drinking some app
le juice.
Swallowing had been getting difficult.
X-ray video was taken to examine the next day.

The result was…very dangerous.
When he swallowed, food was trapped in airway once
then went down.
When he drunk, some went into airway so he needed to cough to get it out.
If some goes into his lung, it might cause pneumonia.
This had to be avoided.
My son was very confused as he received information directly.
The other thing was his loosing weight.
He was explained that it is necessary to have the surgery for gastrostomy tube
as soon as possible.

At lung test and consultation,
it was found that his breathing was weaker than the last time as his lung musc
les got weak.
As a result, he had to use a breathing machine for the night.
A vendor came to our house to deliver the machine and explained how to use it.
I was devastated to see the machine for real and to see my son with breathing
mask on.

At physical therapy, he was diagnosed as his right hand muscle was starting to
loose strength.
It hurt very badly every time to see his shaking right hand.
I am worried how it goes on.

Why God does not stop progression of his disease?
So many people are praying for it….
Unbearable pain to see my son attacked by a disease is not stopping…

I hope the new medicine to cure my son come out without further delay.

Translated by Ai Hongo