Surprise ! Received a couple of Tuesday evening calls which resulted
in our not going to CHLA today. As Ethan is moved from one med to
another, it seems there is some more information the researchers need.
In addition to his last lab tests, they are concerned with how long he
has been on the meds he is using now. They also want to see if he will
stabilize some physically first. We are to continue keeping records, call them
if needed, and plan on Wednesday Oct. 2 for Ethan's next visit.
Will see how it goes. He continues to eat a lot, be very moody, and have
balance, swallowing, and vision issues.
Thank you all for your prayers and support. We all appreciate it more than
our words can express. THANK YOU.
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