Andrea note from Thu 4/30/09

Hello all,
I've just come back from my three days at Mike and Marilyn's and
have a little more progress to report. Andrea took two steps on
Tuesday with the physical therapist and Mike. Andrea said they were
"weanie" ones, but we said that's better than none! They had her
standing beside the bed and Josette (the physical therapist) asked
her to take one step to her right, then bring the other foot to it.
She was able to do that with support and then said, "I can't" when
Josette asked her to do it again. Josette helped her move her right
foot, then Andrea brought the left to it; she almost immediately
collapsed back on the bed--but it was two steps! On Monday, I made
the decision to turn off her tube feeding during the day (from 8 a.m.
till 8 p.m) to try to get more food into her orally. It didn't work
very well on Monday, but she took in about 600 calories on Tuesday
and was on her way to that much on Wednesday, so.... maybe we're on
the way to getting rid of the tube feeding, too. We still run it all
night at a little higher rate than we had been, so she gets at least
1000 calories from it. I had talked to the dietician and she said
that should be adequate during a transition phase, so, we're doing
it. Marilyn was to get some flavorless protein powder yesterday and
we can add that to most anything that she eats to boost her protein
intake. In addition, they were going to try some Ensure Plus to
boost her calories. Andrea now has hand and ankle weights and is
supposed to be doing some exercises with them--it's a push to get her
to do them, but that will become easier with time, too. I believe
she is to get another Cytoxan treatment on the 8th and she goes to
OHSU on the 11th for an appointment with the neurologist. So
progress continues.
Mike seems to be feeling a little bit better, but the colitis still
isn't totally under control. He has a little more energy and is
getting outside to do some chores--mowing, weed pulling, etc. So, a
little progress there, too.
Thank you all for your thoughts and support! It's easy to get
discouraged when progress is slow and it helps too receive your
encouragement!
Love,
Jan

Andrea update for this week

Hello everyone,
A little more progress to report on Andrea this last week. The
biggest thing is that she was able to take a fork and spoon to her
mouth. Marilyn put food on the spoon for her over the weekend and
she was able to get it to her mouth with only a couple of spills.
Yesterday, I had made a sandwich for her and she asked for a fork to
feed herself with. I was not too sure about it; her movements are
still not completely controlled and I could just see her stabbing
herself in the cheek or eye! But she didn't! I had to get pieces of
the sandwich on the fork for her, but she did it the rest of the way
and ate half of what I had made--so, progress! She was able to stand
twice for 25 sec. on Tuesday with the help of PT and Mike. The
physical therapist plans to try to stand her by the kitchen counter
today so that she can use her forearms on the counter and brace her
knees against the cupboard doors. She is hopeful that she will be
able to be more stable that way. Andrea is scheduled for another
dose of Cytoxan on Friday and has an appointment with the neurologist
at OHSU on Monday, so maybe I will have more to report next week.
Mike went to the doctor on Tuesday and they changed his medication
to reduce the amount of steroids he is taking and increase the amount
of other medication. He seems to have a little more energy and feel
a little better, but his colitis is still somewhat active.
Until next time,
Jan