Update # 59

We got another phone call from CHLA Thursday evening.  His
next planned med trial has been stopped.  No one will be getting it
per the powers to be.  They want us to come in Tuesday for vision
checks etc. and then again Wednesday.  Not clear what is planned
for Wednesday yet - but I am sure some waiting will be in order.

Ethan continues to have balance, vision, and swallowing issues.
Due to some of the meds he is currently taking, he is ALWAYS
hungry and has put on quite a bit of weight.  With the weight
gain comes stress in breathing and moving.  I feel so sorry for him.
They directed us to make a reduction in his meds now with more to
come soon.  Hopefully this will have the same effect as it did in
June and the hunger, breathing, and weight will return to normal soon.

We (Grandma, Papa, Ethan) went to the public library today.  It was
quite the event, he does like books.  Ended up reading some and
returned home with 6 others.  Guess what we will be doing this p.m.

Thanks for your prayers and support, they mean everything to us.
More to come soon...