TV day. As he realizes what he can and cannot do (reluctantly) he goes
about organizing his day. He often tells us through tears that he does not
like things that are happening and he is frustrated ! We agree and (reluctantly)
try and help organize his day.
He has put on more weight and is constantly hungry (not really), which is a side
effect of his meds. So we try and feed him and at the same time keep him
as busy / occupied as possible to keep his mind off of it. He is also dealing with
the inability to do so many of the things he could do not that long ago. Ethan does
very well in adjusting to his abilities but gets very frustrated at times.
Wednesday is our regular trip / visit to CHLA. Ethan knows this and is already
getting himself mentally ready for the experience. Due to recent changes in his
health and med trials, he will have labs and a team meeting. He use to have team
meetings monthly, but this will be three weeks in a row. Ethan thinks the doctors
are nervous and that is why they want to see him again. To his credit, he almost
always has a good attitude and behavior when with them.
Not sure why, but Ethan has become a real "Bill Cosby Show" fan. Toss in a
snack of fruit and juice and he is one happy camper. At times he laughs so loud
that you can hear him in another room. Thanks Bill Cosby !
Thanks again for all the prayers and support. And a special thanks to Karen and
Tom for spending an evening getting us out for dinner and some "friends" time.
We really enjoyed it, your friendship is very special to us - thank you!
Ethan having a snack while watching the
"Bill Cosby Show".
9-24-2013
No comments:
Post a Comment