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Day
By Day Account of Our CI
Treatment in
Germany:
The
link for the pictures is:
. http://photos.yahoo.com/rpping
The
days will correspond to
days we spent receiving
some type of treatment.
Day
1
(the day we arrived after
the overnight flight):
After
the tour, we went back to
the apartment to unpack
and sleep. I kept getting
this really dizzy, weird
feeling and had to sleep.
After a 1 ½ hour nap, we
woke up, ate, and went
back to the clinic for
Corbyn’s first
"day."
Sabine
checked her arm and hand
movement (active), had her
do a few things (staple,
pull in a chair, peel and
eat an orange) using her R
hand and/or both hands.
Corbyn did a great job.
She never said NO or I can’t..she
just did as she was asked
and was smiling and having
a good time. I was
surprised when she was
able to peel the orange
(see pictures). She did a
wunderbar (wonderful)
job!! At one point, we had
to go to the children’s
house to get a helmet (one
of Corbyn’s
goals..fastening it with
both hands). All of the
children were friendly and
interested in talking to
Corbyn. Again, though…we
understood nothing.
Day
2
Today
we had our first day of
formal treatment (pictures
were added to
"therapy" link).
We started at 9am. Sabine
first gave Corbyn a test
called the Motor Activity
Log (essentially a
questionnaire that
documents the amount of
use of the affected limb
and has the person rate
its difficulty level).
When the test was
finished, we went to see
Dr. med. Arne Voss, the
head physician at the
clinic. He did a complete
case history and physical.
It was funny b/c I told
him that Corbyn’s
hearing was fine and she
reported difficulty
hearing in the R ear…then
it occurred to me that she
was still blocked from the
plane ride as the ear was
infected when we flew. The
Dr. was really nice and
spoke English well
(although he didn’t
think so). When we
finished with the Dr., we
went to see the PT (head
of the PT department-Ms.
Susanna Freivogel). She
completed some motor
testing and rated Corbyn
on the Ashworth scale. She
was quite impressed with
the difference in Corbyn’s
gait with the AFO in place
(just an aside).
Then,
it was lunchtime. We
headed off to the
cafeteria at the clinic
and had our first
experience with a German
salad bar and ordering
food…without Sauerkraut
and stuff we don’t like.
Aaron and Ryan ate brats
(nice familiar WI food)
and Corbyn ate cannelloni.
I opted to eat Corbyn’s
salad (no dressing) and
her left over cannelloni.
Sabine came with us to eat
so we felt a bit more
comfortable. Now when we
walk around, we hear the
patients (mostly
teenagers) saying *****Amerikaner****.
Of course, we don’t
understand most of what
the say, but we understand
the American/English
statements. Most of the
ppl at the clinic are
friendly, though.
After
lunch, we continued with
testing. Aaron and Ryan
decided to stay in the
other "house"
and play tische kiker
(foosball) and tische
tenis (ping-pong) while
Corb and I headed off to
do the Wolf Motor Function
Test. This test is done
with both the left and
right arms and measures
speed and quality of
movement during various
tasks (e.g., sliding a
weight off the table,
lifting a weighted basket,
picking up a paperclip,
flipping over cards,
stacking checkers, etc.).
Of course, Corbyn had no
problem doing any of the
tasks with her L arm and
as rated as 5
(perfect/normal movement)
on all tasks. On the R
side though, there were a
few things she couldn’t
do (stack checkers and
pick up a full soda can
and place it on top of a
box) but she really did
quite well. I was thrilled
when she picked up the
paperclip and when she
successfully flipped 3
playing cards over.
The
final test we did was a
finger-tapping test. This
was a test that measured
how many times Corbyn
could use an isolated
finger/thumb to press the
space bar on the computer.
With her L hand, Corbyn
tapped the bar 75-87 times
depending on finger (pinky
(D5) < index (D2)).
With the R hand, Corbyn
only successfully used her
pointer and middle finger
on the first try (20
taps). But, on the 2nd
attempt, she was able to
do all of the fingers and
thumb. This was a
difficult task for Corbyn
and for us (Sabine and me)
as we had to try to
prevent any movement in
her shoulder or arm
(normal compensatory
movements for Corbyn) and
try to position the key
board and Corbyn’s hand
so that she could hit the
space bar with the target
finger only.
By
the time this was done,
everyone was exhausted…except
the boys who were off
playing checkers and other
games. Sabine took us to
the administration
building so we could pay
for our treatment. This
took nearly 45-mins as we
had to sign WAY TOO MANY
travelers cheques. They
were laughing at us..but
we brought the largest
denominations the bank
had! It wasn’t our
fault!
Day
3
2/13/01
(pictures were added to
the therapy album on the
link)
Today
we began therapy at 9:00.
Corbyn did an absolutely
incredible job. She worked
and worked and worked and
didn’t complain. She
willingly attempted every
task and tried to better
her score (the number of
pegs she removed in 30
seconds). Corbyn surprised
the therapist, me, and
even herself with the
stuff that she was able to
do with her right hand.
Lunch
took 1 hour and 10 minutes
to eat, but Corbyn did it
with her right hand. Today
she was able to hold the
fork/spoon without
dropping it as it reached
her mouth. She still
needed assist to turn her
wrist to stab the food and
get it into her mouth
after she lifted it to the
level of her chin.
Drinking posed a greater
challenge. The cortical
representation for the
control of her R hand is
clearly smeared with the
motor control of other
body parts. In other
words, when Corbyn goes to
do something with another
body part, her R hand does
the same thing. For
example, when trying to
drink, Corbyn would open
her mouth as the glass
neared her face and the
hand would immediately
open as well. We had to
train her to keep her hand
closed even when she
opened her mouth…very
interesting!! (A great
example of the cortical
reorganization that has
been proven with this
treatment technique).
Corbyn’s
attitude is amazing as
well. For the behavioral
contract, she had to say
things she WOULD do with
her R hand at home…she
kept saying, "of
course I can do that"
or something similar to
that. She is very
cooperative ..even with
me. I couldn’t have
hoped for a better
performance. Even Sabine
was thrilled with the
progress she made in one
day. Eating dinner only
took 45-minutes (so a
significant improvement in
completion time).
At
home, she is still
required to wear the sling
(scarf for today as the
splint and real sling won’t
be ready until tomorrow)
80-90% of all waking
hours. She is permitted to
remove it when a) water is
involved (e.g., showering,
going to the bathroom,
etc), b) in dangerous
situations (e.g.. walking
on the side of a
mountain), and c) when she
is doing things that
REQUIRE bilateral arm use
(e.g., dressing, carrying
large objects, writing,
drawing, playing GameBoy,
etc.). Corbyn is
encouraged to use both
hands equally during these
tasks and we are trying to
limit the amt of time
spent doing any bilateral
tasks. L handed tasks and
bilateral tasks promote
the cortical smearing that
we are trying to
eliminate.
After
dinner we all played the
board game
"Sorry." Corbyn
turned over the playing
cards and moved her pieces
using the R hand. It
certainly took a lot
longer, but she was very
proud of herself for being
able to do it. I must also
give Aaron some
congratulations as he
encourages Corbyn to use
her R hand and doesn’t
get upset over the extra
time or the funny
positioning of her fingers…he
just tells her "wow,
you did it" or
"I didn’t think you’d
get that..that was
great." I was shocked
at his supportive behavior
at first but am very
thankful that he is
helping instead of trying
to tease or be a typical 7
yr. old irritating his
sister.
If
Corbyn continues at the
rate at which she worked
today, we will be more
successful than I could
have imagined. Keep us in
your thoughts!
Day
4
Today
we started tx at 8am.
Corbyn and I left the boys
at home, asleep. We walked
to the clinic as we always
do but it was colder as we
left an hour earlier.
Today
was a day of firsts:
At
8:45am, Corbyn turned her
wrist independently for
the first time in her
life.
At
8:50am, Corbyn grabbed a
small object with her
thumb and pointer finger
(pinscher grasp) for the
first time in her life.
At
9:30 am, Corbyn held the
small medicine glass
independently and drank
from it without assistance
(after holding the glass
in the air for her to
grab).
At
9:35 am, Corbyn moved her
forearm without moving her
elbow or other parts of
her body.
the
afternoon, she wrote her
name, cut paper, and
stapled using her R hand.
All of these things she
would never have even
attempted prior to this
training. Now the writing
was a bit messy, but she
was able to hold on to the
pencil and made legible
letters. For cutting, she
used a regular scissors
but had to have them
supported a bit by the
therapist. But…her
fingers opened and closed
WHEN she wanted them to
and moved independent of
her other hand. Also they
moved quickly…a movement
necessary for many every
day tasks. For the
stapling, at first she had
great difficulty getting
enough force to staple. In
only 1-minute of practice,
she was able to staple
with ease! She put some 20
staples in a piece of
paper in less than
20-seconds.
As
I type, Corbyn is sitting
on the bed brushing her
hair with her R hand. She
is watching cartoons (an
American show dubbed in
German) and periodically
she raises her R hand and
takes a few more passes at
her hair. She has held the
brush in that hand for at
least 10-mins now.
Kinda
a first….Corbyn ate
lunch today in 35 minutes
instead of the 65 minutes
it took her yesterday.
I
asked the therapist if
Corbyn’s progress was
typical as I thought she
was doing far better than
I expected. As I thought,
Sabine said that Corbyn
was making outstanding
progress and that most ppl
don’t do this well this
quickly. Sabine felt that
it was Corbyn’s
wonderful attitude, the
intrinsic motivation she
derived from her
successes, and her
willingness to work and
try new things.
I
asked Corbyn what she
thought about her hand…she
said, "WOW!!!" I
guess that says it all!
Corbyn
still has not complained.
She smiles during therapy
and loves it when she can
do something new. At
dinner tonight, she still
needed help but did not
get irritated or upset
when the food fell off of
the fork. I am amazed at
my daughter. She is braver
than brave and the hardest
working kid I’ve ever
seen.
I
must say that Sabine has a
lot to do with Corbyn’s
happiness in therapy.
Sabine is wonderful …a
thinking, brilliant
clinician who thoroughly
understands the treatment,
but more importantly
understands children and
how to get them to work in
a fun, yet therapeutic
fashion (and age
appropriate). Other
patients have come up to
us in the dining room (TBI
at that) to tell us how
much they miss Sabine
working with them (Sabine
is not treating anyone
else but Corbyn these 3
weeks). Others have told
Sabine they are angry with
her for not seeing them…obviously
they love working with her
too.
The
last thing on this topic
for today…a
warning/heads-up for
anyone thinking about
doing this
treatment...this is also
very hard work for the
family members of the
person undergoing CI
therapy. Corbyn is now
dependent on others
(mostly me) for help with
…well…really
everything (except going
to the bathroom as she can
take off the splint). I am
exhausted by the time I
come home from watching
her struggle, helping her
eat, and worrying about
her. Then when we get
home, it is more of the
same…helping her get out
her notebook and helping
her turn the pages…helping
her play board games…
helping her eat/drink…helping
her get ready for bed…etc…You
have to be available all
of the time…and I am
more than happy to do so.
I just didn’t realize in
advance how draining it
would be. Ryan and Aaron
are also helping. Aaron
helps her play games on
the computer and they also
spent time looking up
German words (found on a
Pokemon sticker) to
translate them into
English.
Day
5
Today
tx started at 8am again so
we were done by 3pm.
Today
was not nearly as exciting
as yesterday…but
everyday can’t be a day
of firsts/making
tremendous gains. She
maintained all that she
learned yesterday, but
became frustrated (I
shouldn’t have said
anything yesterday…LOL)
when the hand/arm didn’t
do EXACTLY AS SHE WANTED.
Of course, the stakes have
been raised and the
quality of Corbyn’s
movement is being targeted
now. In other words, when
she picks up a block, it
can’t just be picked up
and put where it goes, it
has to be with her wrist
straight, without body
movement, lifting just her
arm (or lower arm if that
is the goal), etc.
Obviously, this is much
harder to do. Corbyn is
always asking about her %
correct or what
"grade" she got
on the task. Hmmmm she
sounds like some other ppl
I know really well.
She
also had a lot of
difficulty prevent her
mouth/L hand from moving
when she was trying to
work the R. Unfortunately,
the undifferentiated
control in her brain
caused her to open her
hand again when she opened
her mouth. Of course, this
happened towards the end
of tx. I should say that
Corbyn really begins tx at
7am when she’s required
to be splinted and brush
her hair and eat. Although
she doesn’t have tx at
12 noon due to lunch,
Sabine eats with us and
Corbyn is required to do
all the eating and
drinking with her R hand
(sounds like more tx to
me). Then when tx is over,
Corbyn still has to do
everything with her R
hand. So at this point, I
think Corbyn is over the
"novelty" of the
R hand doing things and
would rather go back to
the easy way. Luckily, she
is a hard worker and won’t
give up.
I
do hope tomorrow has some
big thrill for her…
Day
6
Today
tx started at 9am … we
started to walk to the
clinic but the ice on the
sidewalks seemed a bit
dangerous for Corbyn so we
got a ride in.
Thank
goodness today was
exciting for Corbyn. She
was able to use a tripod
grasp (thumb and pointer
and middle fingers) to
pick up things. She needed
a little help initially
getting into position
(slight pressure on her
palm), but was able to
maintain the position long
enough for Sabine to
thread through a string.
Corbyn actually had to
continue holding the block
and move it along the
length of the string
without dropping it.
Eventually she also got
the pincer grasp and did
the same thing. Corbyn was
thrilled with the
progress.
Corbyn
was also able to
volitionally abduct her
thumb to a neutral
position. For those not
familiar with spasticity
patterns…typically, the
thumb is held in towards
the palm and can not be
brought out to the side of
the hand (abduction)
volitionally (and actually
it hardly ever occurs even
accidentally). Today Corb
was able to move the thumb
into the proper position
multiple times. It is not
100% of the time yet, but
it is pretty consistent.
Corb can also bring her
wrist to neutral 70% of
the time now too.
Day
7
What
a great Monday! Corbyn
rated it a 9 on her 1-10
scale. That’s the best
ever. And the reason for
her excitement and
enthusiasm?? Well, I think
it had a lot to do with
her consistent ability to
abduct her thumb..well
really to do a ton of
movement with her thumb.
She was also consistently
able to keep her wrist in
a neutral position and
able to supinate half way.
Corb was so thrilled with
her hand she was actually
kissing it!!!!!
Corbyn
practiced keeping her arm
straight (going against
the spastic pattern) while
on a trampoline..she loved
that. She also had the
chance to practice keeping
her hand on a bar
(gymnastic goal).
Check
the picture of Corb
carrying the spoon..on the
way to haus A (one of the
tx houses), Corbyn dropped
the checker 10 times. On
the way back to haus D,
she only dropped it 4
times. I have to add that
while doing this activity,
Corbyn’s gait was
PERFECT. No limp, no leg
swing, no hip hike…very
interesting!
Day
8
Corbyn
did really well again
today…
She
was able to externally
rotate her shoulder and
still hang on to objects.
Her supination improved…her
thumb control remained
excellent…she was able
to climb a ladder…it now
only takes her 30-minutes
to eat (vs. over an hour
initially) with her R
hand. She continues to
have a great attitude and
is a wonderful worker.
Day
9
Well
this morning wasn’t so
hot... Stuff that was easy
for her yesterday was
really hard today. And the
harder she tried, the
worse it got and the more
frustrated she became. But
the afternoon went a lot
better.
The
most exciting thing that
happened today was that
she ate lunch with only
20% assistance (making
sure the food didn’t
fall off the plate) AND
very quickly too…not
sure on the exact time but
Ryan and Sabine were still
eating so it must have
been within
"normal" limits.
We are going to try a
scoop dish next time.
Normally she needs some
help grasping the fork,
stabbing or scooping the
food, or something. But
today she did it by
herself…I am sure she
could have done it without
any assistance if she had
the modified plate.
She
was also able to put on a
bike helmet (she used both
hands), and fasten it
without pinching her skin
(she couldn’t do this
consistently before). She
is happy about that b/c
now she doesn’t have to
ask for help anymore.
Actually, she was able to
do it as quickly as her
brother can do his..so she’s
pretty fast.
Corbyn
was also able to drink
from a cup (sm. plastic
with a handle..like a
tea-cup) with appropriate
finger and wrist position.
She learned to do this
first with an empty cup,
then a single marble was
added…then additional
marbles were added to
increase the weight of the
cup (like there was a
drink in it)…when that
was easy, beans replaced
the marbles. Beans tend to
fall out easier as there
are many more of them and
they are lighter. Once
this was easy, Corbyn
practiced with water. She
did great! Not only does
Sabine require her to lift
it properly and drink from
it with good positioning,
but Corbyn is also
required to take it from
her mouth and place it on
the table with control and
then remove her fingers
from the handle. All of
this we take for granted,
but it requires much
thought on Corbyn’s part
to complete all of the
steps without tipping over
the cup or slamming it
down so that the contents
spray up at her.
Some
more exciting news…from
this evening…Corbyn ate
her dinner independently
(spilled a little water
but who cares)!!! Corbyn
also spent about an hour
typing part of her story
(a story that she’s
writing that’s based on
Star Fox64 a Nintendo
game) with her R hand. She
was actually having a good
time and even managed to
hit the shift key AND the
quotation marks by
herself. That required her
to hold down the shift key
with her ring finger and
pushed the quotation marks
key with her middle
finger. She was also able
to use the
"mouse" (I can’t
remember what this type of
mouse is called…you use
your finger to direct the
cursor on the touch pad)
to get to the SAVE symbol
to save her work!! OH MY
GOSH! I can’t believe
the control she’s
gaining over her fingers…she’s
so awesome!!!!!!!
Day
10
As
far as therapy specifics
go…she didn’t have any
huge gains but she did
everything very well. The
supination and pronation
are coming along.
After
watching Corbyn and seeing
the other children at the
clinic who underwent CI tx
vs. reading the reports on
CI therapy, I’ve come to
a few conclusions….
- Both
children and adults
with hemi-paresis will
make measurable gains
during tx that will be
verified on
post-testing. I am
positive that Corbyn
will have made
significant progress
based on the testing.
- According
to the literature, the
adults maintain these
gains for up to
2-years post-tx and it
is assumed that this
will be maintained
past this point, it
just hasn’t been
measured past this
point. There are no
studies with children
or with those injured
prenatally so we don’t
know the longevity of
the tx effects.
- Children
with prenatal strokes
or anoxic damage that
leads to hemi-paresis
(often termed CP) are
very different from
later onset stroke/BI.
- Children,
such as Corbyn, do
not have a
"LOSS" of
function whereas
older children/young
adults/adults DO
experience a loss…So,
the adult has a
greater motivation
to regain
independence and use
of the impaired limb
(particularly if it
was the dominant
hand). Corbyn
experiences failures
due to the
hemi-paresis but it
is not her dominant
hand (who knows
whether she would
have been a righty
or a lefty..it doesn’t
matter now) and she
has not known life
any other way. She
is very motivated to
fix her hand…but I
am doubtful that she
will use her R hand
or both hands for
the tasks that she
has already mastered
(like dressing). I
think she will use
the hand to help
WHEN she must but I
don’t think that
her functional use
will change
remarkably.
- The
cortical
smearing/reorganization
in the CP kids is
different (Sabine
explained this to me
at length) and needs
to be treated
differently. For
example, Taub (CI
"father")
and David Morris
(the head PT working
with Taub) stress
the need to prevent
any bilateral tasks
during CI tx. This
is to facilitate
reorganization of
the hand and fingers
to adjacent
non-damaged brain
tissue and/or
associated cortical
area on the opposite
side of the brain
(i.e., ipsilateral
control) and to
undo/prevent
cortical smearing.
HOWEVER, in children
with the prenatal
damage, there was
NEVER any individual
control of the
impaired hand (they
were too young to
have learned to do
anything with it).
So these children
tend to develop
motor patterns that
make use of
"spill-over"
motor movements from
other body parts
(sometimes a
mirroring of the
other hand or in
Corbyn’s case, she
always had to
activate her L hand
prior to being able
to initiate with her
R hand). So what
does all this mean…well,
Corbyn has to
practice doing
things with 2 hands
in addition to the R
handed tasks in
order to allow the R
hand to do something
different from the L
hand. Sabine says
this is normal in
these early insult
kids.
Well
that’s quite enough of
that I think…all in all,
Corbyn has made more
progress with her R hand
in 2 weeks than she
learned in 9 years of OT
and PT treatment. She now
knows that the hand CAN
move and do things she
asks it to do. She now
knows that she can control
the individual fingers
during some tasks. She now
knows that her hand can
learn to do things if she
tries hard enough. And I
am satisfied that I have
provided my daughter with
every opportunity to
improve her functionality
and quality of life…even
if she never uses the hand
again. We are all happy
that we came. The
experience has been
unbelievable.
I
know, I sound as if it’s
over…it is not…it’s
just I realized a few
things today while
watching Corbyn without
the splint on and then
with just the splint but
no sling…the less
restricted her L arm is,
the more she uses it…that
is not surprising but it
is amazing to me how
automatic it is for her to
use the L hand even after
HOURS and HOURS of
positive reinforcement for
R hand use. So, I just
wonder if in the long run
any of this training will
have mattered….I guess
only time will tell. And
as I said before, I am
glad that we tried…no
matter what happens.
Day
11
Well
Corbyn slept from 8pm
until 845am and woke up in
a much better mood. We had
tx from 10-5 and that was
a little tough with so
much tx in the afternoon.
Today Corbyn had more
success controlling her
fingers individually. She
was also able to pronate
easier while using
internal shoulder rotation
to help. Pronation without
shoulder rotation was VERY
difficult. Corbyn’s
wrist is also under her
control MOST of the time.
A
funny thing…when we
first started therapy, she
could fit her R hand
through a red ring without
any difficulty. Now, she
has a tough time getting
her hand through there.
Why…b/c her thumb stays
at the side of her hand
now instead of being in
the flexed position inside
of her palm…interesting!
Oh..Corbyn
now moves her arm
independent of her body.
Initially, trunk movement
of some sort accompanied
all arm movement. Now she
can move the arm in many
directions without any
body movement at all.
I
discussed my concerns
about the carryover and
functional use of her hand
with Susanna F. the head
PT at the clinic. She
agreed that these kids
with the early brain
damage…those without a
sense of "loss of
function"… will
never really use the
impaired hand UNTIL it
becomes quicker and easier
to do so. So…the
recommendation… continue
to do the CI therapy at
home until the hand
becomes more agile and its
use more automatized.
Corbyn is OK with that as
long as I don’t go to
school with her!
Day
12
Today
we started therapy at
9:00. The walk to the
clinic was sooooo cold! We
could hardly feel our legs
by the time we arrived.
Sabine told us it was –8
degrees (Celsius of
course).
BRRRRRRRRRRRRRRRRR
Corbyn
did really well with her
wrist today. Lots of
movement (past 0 degrees)…very
controlled. She ate lunch
with set-up and some min.
assist (repositioning fork
or plate). The supination
is also really improving.
So is grasping…Corbyn
was able to pick up tennis
balls without difficulty
today. Why is that a big
deal?? When therapy
started, she couldn’t
even come close to picking
up a ball. Now she can
pick up 7 tennis balls and
place them in a basket in
15 seconds. That is
accomplished with good
thumb and wrist position
too!
I
didn’t get to see the
afternoon therapy…I had
Aaron with me so we could
work on his Germany
project for school. Aaron
still has a lot of
homework to do…I sure
hope we can get it done!
Ryan spent the time
running errands.
Day
13
Corbyn’s
morning was pretty much
status quo. However, in
the afternoon, I decided
to ask Sabine about
modifying Corbyn’s
treatment approach. I wasn’t
sure how she’d feel
about this but thought I’d
try anyway. My idea…go
against Taub’s treatment
approach and train
bilateral tasks. I would
never have thought to
oppose his ideas but given
that all of his work and
research has been with
adults (those who had
function then lost it) and
not with kids who relied
upon 1 hand for their
entire lives…I figured
it was "OK."
Anyway, as I’ve
mentioned before, as soon
as we take off the splint,
Corbyn was going right
back to doing everything
with her L hand…so I
thought we should focus on
training JUST those things
that she CAN’T do
WITHOUT using BOTH hands.
By doing this, we would
give Corbyn the
opportunity to practice
the movements (using the
shaping principals) and
gain the positive
experiences that come from
being successful with the
activity. I think that
this approach has a much
higher likelihood of being
able to be generalized to
her real world activities.
I
do not think that Corbyn
will realistically pick
stuff up with her R hand
(unless her L is busy)…so
continuing to train it…now
that she has gained the
functioning of the hand
and arm…seemed useless.
(Don’t hear me wrong..I
am NOT saying that all of
the training to date was
useless…I think it was
extremely necessary in
order to obtain the muscle
movements…she would
NEVER have learned to move
her thumb volitionally or
to straighten her wrist…or
any of the other fine
motor movements she’s
learned without the
traditional CI tx she
completed). Now, I just
think it is time to switch
gears a bit and go for the
things that will really
require BOTH hands to work
together.
Some
of the things we tried
today were: carrying a
full laundry basket,
opening jars, spreading
butter on bread, pouring
drinks, putting on a coat
AND zipping it up, holding
onto reins, etc.
Corbyn
was never able to carry
her clothesbasket more
than a few steps without
the R hand letting go.
Today she carried a very
heavy basket much farther
than she would need to at
home. She was even able to
run carrying the basket…you
know…very impt for those
laundry emergencies! So,
even though we didn’t
have to train the task…it
was nice to see that the
benefits from the other
training activities
applied to this functional
task (OK cog. Team members…don’t
die).
She
was able to do the other
tasks as well. All of
these things were
difficult for Corbyn
previously and she tended
to give up and ask for
help. Regarding the
zipping…she was able to
consistently zip her
jacket independently. She
has never been able to do
this!
So
tomorrow, Sabine and
Corbyn are going to work
on holding on to reins
while on top of a saddle
(on a swinging
"horse" in the
PT gym), folding clothes,
carrying things and
opening doors at the same
time, more jar opening
(depending on the size,
this was difficult), more
pouring, dressing with R
hand assist, opening
ketchup packets…umm that’s
all I can remember. So, I
hope that this approach
will lead to continued
gains and gains that will
be more likely to be
carried over when we come
home. Additional treatment
activities will include
going to the store (again
cog. Team…I know )
getting the items, paying,
carrying the bags, etc.
Sabine said Corbyn would
go in and get one item,
pay, leave the store, then
go back in for a different
item..and do it over and
over and over (again the
massed practice/shaping
procedures)…just with
highly functional things.
I
told Sabine that was
should write our own
protocol for how to tx the
kids with impairments from
birth/infancy…she
laughed…but who
knows..maybe this will
work better! I guess only
time will tell.
Any
of the other therapists
(PT, ST, NP…whoever) out
there who have anything to
add or would like to
comment, PLEASE feel free
to do so. I’d love to
hear your thoughts.
Day
14
Corbyn
went to therapy from
10-5..but I wasn’t there…so
no pictures or updates…except
that Sabine told me Corbyn
was able to carry a heavy
laundry basket up 2
flights of stairs, into
the next Haus, across the
courtyard in the clinic,
and sideways around
obstacles…I guess that
goal is met…LOL
She
was also able to lift her
arm above her head while
holding objects and then
release them into a
container (above her
head). Sabine had to go
catch her bus so she wasn’t
able to tell me anything
else.
Corbyn
ate dinner independently
(after setup). She also
typed more of her story
with her R hand. She is
still making noticeable
improvements in her hand
functioning.
As
such, we have planned to
extend our stay at the
clinic.
Day
15
Corbyn
had another good day at
therapy. She demonstrated
further improvements in
her hand strength, ability
to pick things up with
just the tops of her
fingers, and to maintain
her hand and wrist neutral
position, even during
movement. She’s having a
great time on this
"make shift"
horse in the PT gym. She
was able to maintain
excellent posture while on
top of the horse and keep
her hands on the
"reins" in
perfect form. She didn’t
have any problems holding
on..the reins never
accidently dropped from
her hand regardless of the
speed or direction of the
horse’s movement. Her
accuracy for placing
objects has also really
improved.
Most
importantly…Corbyn is
now using both hands more
consistently (when she
doesn’t know she’s
being watched). She is
also correcting herself
when she goes to use the
left instead of the right.
For example, she has
always gone up/down stairs
on the L side of the
staircase in order to hold
on to the rail with her L
hand. Today she went to
the L side, then said,
"Ooops!" and
went over to the R.
I
think the extra week of
therapy will really make a
difference in Corbyn’s
behavior.
Day
16
(Fri we left for Paris
that night…so I didn't
write the email until
Monday…)
Well…where
to start…after a hectic
Friday afternoon (oh..therapy
went well too…can’t
remember any specifics
though),
Day
17
While
we were getting ready,
Corbyn realized that tying
her shoes is much easier
now. She was also thrilled
that she could hold a
regular pencil and write
with it without a
build-up. Corbyn
independently brushed her
hair and got all of the
knots out, too!
Corbyn
had another wonderful day
in treatment. She was able
to maintain good body
positioning and only move
her arm during various
tasks. Her supination
continues to improve (less
shoulder movement). She is
now able to carry a saddle
for a long time and place
it on a bar (a task that
she’s had difficulty
with at home)
independently. She can
also carry a VERY heavy
laundry basket over and
around obstacles of
various heights (trying to
simulate the dog gates
and/or dogs in our house).
Corbyn was able to carry a
lunch tray with both hands
(not propped on the R as
she did previously).
Initially, the tray had to
be light, but by the end
of the day, she was
carrying weighted trays
with wobbly objects and
going long distances
without breaks. Grasping
single objects also
improved…as I said…everything
continues to improve.
Now,
Corbyn talks about her
"bad" hand in
the PAST tense and says
things like, "well
before my hand was
working, I couldn’t do
that." She now
believes that with
practice, her R hand can
learn to do anything. She’s
probably right…if she
couldn’t learn to
supinate after 9 ½ years
of OT but learned in 1 wk
of CI therapy…then I’m
willing to bet we’ll get
isolated finger movement
if she continues to work
at it.
Day
18
Corbyn
made more progress in
treatment today. Check out
the pictures to see a
great example of the
"shaping"
component of the CI
treatment. At the
beginning of tx, Corbyn
was unable to pick up
tennis balls. Then she was
able to grasp them, but it
took 15 seconds to put 3
balls into a basket. With
practice, she could pick
up and release 8 tennis
balls into the basket. So
today, she was required to
place the ball on top of a
small jar (on the mouth of
the jar). At first, Sabine
had to hold the jar so
Corbyn didn’t knock it
over. As expected, the
number of tennis balls she
could place in the 15 secs
decreased (5 on the jar).
Soon Corbyn was able to
place the balls on the jar
without any assistance.
And she was up to 7 in the
15 seconds. So, then task
difficulty increased
again, and Corbyn was
required to place the
tennis balls on top of the
cone.
Putting
on the helmet can be done
in 9 seconds now and
taking it off takes 6
seconds.
She
is able to pick up and
place small puzzle pieces
(regular size) together.
Sabine has to hold the
other pieces, though, so
they don’t move around.
Corbyn can also put on her
coat without any
contortion and it only
takes 18 seconds. Zipping
is easy now too. She also
carried her lunch tray
(with food on it) to the
table and had to navigate
in a small area without
any problems.
Now
for the very interesting
(may only be interesting
for the therapists out
there…but who knows)…Today
we had Corbyn eat using
both hands. In other
words, she used the fork
with her R hand and held a
knife in her left to help
prevent the food from
falling off the plate. Her
L hand was also allowed to
reposition the fork as
needed and turn the plate.
At first, Corbyn COULD NOT
do this. Every time her R
hand went to do something,
the L couldn’t do a
different task. So if she
was trying to stab the
food with her R hand, then
her L hand started to move
and couldn’t stabilize
the target. It was
extremely frustrating for
Corbyn at first b/c the
hands seemed very confused
as to what to do and
couldn’t do different
things. With practice and
max. effort, Corbyn was
able to control the hands
separately. Of course,
eating time went from
20-30 mins (depending on
food) to 65-mins today. I
really wish I had my video
camera rolling to show the
tremendous coordination
problems when trying to
use 2 hands in different
roles on the same task. It
makes sense that this
would be difficult for
Corbyn seeing that she
never did 2 different
things with her hands
before. But, even so, it
was amazing to watch.
Day
19
Well,
today Corbyn got the
bilateral eating down to
30-minutes! She is doing
much better doing 2
different things with the
hands. Sabine had Corbyn
holding a bag in her R
hand and doing a
shape-sorting task as
quickly as possible with
her L hand. Corb had no
problems holding on
(except as the hand
fatigued due to the amt.
of weight in the bag).
Corbyn carried her lunch
tray (all items on it) to
the table without
difficulty. Without some
assistance, she would have
spilled the tray as she
put it into the rack at
the end of the meal.
With
the splint off, Corbyn is
still having difficulty
controlling herself to
stop the L hand from doing
all of the work/taking
over when things get hard
for the R hand. She doesn’t
like to slow down and give
the R hand as much time as
it needs to do the task.
Corbyn
is really a very good kid.
She has tried so hard to
do what’s asked of her.
She doesn’t really
complain. I can’t
imagine how she sticks
with it. Sometimes I get
bored watching her dress
and undress for the 10th
time. But somehow she
keeps going. I can’t
even imagine how she must
feel!
Just
one more in-clinic day!
Half of the day will be
treatment and the other
half will be post-testing.
I can’t believe the
other week is already
about done. I am glad that
Sabine agreed to do the tx
on Saturday especially
since we are losing half a
day on the testing. I am
very curious to see how
she does.
Day
20
Well
the formal clinic
treatment is over. No more
walks to Hegau-Jugendwerk.
Corbyn
was really tired today.
She stuck with it though.
All
of the post-testing is
done. Some of the numbers
are not as good as I would
have liked..but as we all
know…standardized
testing is only one moment
in time and doesn’t tell
the whole story. I don’t
know what I expected…she
did well…
Here
is a brief review of the
results:
On
the Wolf Motor Function
Test (a test that measures
the speed and quality of
various movements), Corbyn’s
median time went from 5.87
secs down to 4.67 seconds
(Sabine said this was a
significant change). Her
mean time overall went
from 28.41 seconds to
26.36 seconds. Sabine says
they don’t normally use
this b/c it includes items
that were really easy
(completed in less than 1
second) and items that
were really hard (unable
to be completed in the
2-mins allotted). More
significant was the
quality of movement that
changed from 2.46 to 3.07
(on a 0-5 point scale; 5
being normal).
The
Frenchay Arm test was
really a bust. I must say
that I did not see
pre-test administration,
but post-test
administration was highly
lacking. What I mean is
that the OT did NOT give
Corbyn explicit
instruction in what to do.
For example, she said,
"Make a 10cm
line." She didn’t
give any other direction
as to what she could or
couldn’t do. Part of
this must have been the OT’s
limited English…I don’t
know. Anyway Corbyn got 0
on pre-test and 0 on
post-test. I am sure that
Corbyn could have
stabilized the ruler for
the measuring test had she
been given even a little
more instruction.
On
the peg test, Corbyn was
able to pick up (from the
table) and place one peg
into a pegboard today. She
picked up 6 more pegs but
was unable to pronate or
supinate sufficiently to
get the peg into the hole.
For pre-testing, she
couldn’t even pick up
one peg.
On
the Ashworth Scale, Corbyn’s
tone decreased in her
elbow only. The others
(shoulder, hand, fingers)
remained unchanged.
On
the finger-tapping test,
Corbyn pressed the space
bar 10 times in 60 seconds
with her thumb on the
pre-test. Post-test score
was 34 times. With her
pointer, pre-test was 21
and post-test was 29.
Middle finger was 26 pre
and 31 post. Ring finger
was 9 pre and 27 post!
Pinky was 5 pre and 31
post!! So we gained a lot
of individual finger
movement.
On
the Dynamometer, Corbyn
squeezed her hand with 3
kg of force pre-test and 6
kg of force on post-test!
That’s pretty good
improvement in strength!
As a reference though, her
L hand can exert 16 kg.
Active
thumb abduction went from
7 cm to 9 cm as measured
from the top of the
pointer to the top of the
thumb.
Overall
strength in the R side
improved in the following
areas: shoulder extension,
elbow flexion, pronation,
wrist flexion, wrist
extension, radial
abduction, and finger
flexion. The other areas
remained unchanged.
On
the Motor Activity Log, a
test which measures amount
of use and
quality/difficulty of the
movement, Corbyn made the
most dramatic changes. On
the 12 items, 5 items can
be completed with one hand
and the remaining are
bilateral tasks.
Pre-testing, Corbyn
received an amount of use
score of 0.4 for the
unilateral tasks (again
0-5 scale with 0 being not
used at all and 5 being
all the time) and a
quality rating of 1.3.
Post-testing scores were
4.0 (it should be noted
that Corbyn received
scores of 5 on 4/5 items
and a 0 on the remaining
item as she did not do it
in the last 2 days (pick
up/dial a telephone)) with
a quality rating of 3.1
(again a 0 was factored in
b/c she didn’t do it).
For
the bilateral tasks…pre-testing
use was 1.43 with a
quality score of 1.29.
Post-testing scores were
4.57 with a quality rating
of 3.79!
The
Actual Amount of Use Test
is not administered in the
traditional way: patient
is in a room and is
unknowingly (consent was
received prior to
videotape anything and
everything…LOL)
videotaped doing various
tasks in a room
(functional things like
turning pages in a book,
writing/holding paper,
giving someone something,
looking through the
newspaper, etc). The tape
is then rated to see which
extremity was used during
the task. This is supposed
to be a fairly reliable
measure, as the client
does not know that they
are being watched. Sabine
can’t administer the
test in this fashion so
she observes Corbyn doing
those things (if they come
up) and sees how she does
it...no cueing. On
pre-testing, Corbyn did
not do anything
spontaneously with her R
hand. Sabine hasn’t
filled out the testing
form for the post-test
results…but here are my
observations based on what
she does at the apartment…
Grabbing
and pulling out chair is
now done with R only or
both depending on size of
chair. Opening doors is
always with the R hand.
Turning on/off lights is
always with the R hand.
Grabbing things depends on
size of object…she
clears the table with her
R only, but will use both
hands if the object is
large. Eating is bilateral…uses
fork/spoon with her R hand
and uses the L to
hold/position the
plate/bowl. Drinking is
bilateral..puts the cup in
her R hand with the L then
drinks with her R. Pouring
is bilateral..holds her
cup with the R and pours
from the pitcher with her
L. Buttering bread is
bilateral…holds the
plate/bread with the R and
butters with the L.
Dressing is bilateral.
Brushing teeth is
bilateral. Playing
Game-Boy is bilateral
(able to use the thumb on
the R hand consistently).
Shoe tying is bilateral
(always was but Corbyn
reports it’s much easier
now). Carrying things
depends on the size but
she will always give her R
hand something to carry…she
trusts it much more now.
I
have to say that I’ve
observed these things when
Corbyn didn’t know I was
watching or when I’d
just pop in quickly and
she couldn’t switch
hands quickly enough..so I
know she was doing with
the R hand prior to my
arrival. At the beginning
of last week, she’d try
with her R and if it didn’t
work on the 1st
try, she’d immediately
switch to her L. Now she
sticks with it until it’s
done.
So…she’s
much better. Quality wise…speed
wise…automaticity wise…but
will it stick??? The
previous research (again
wrong population) says it
will stay…WE"LL
SEE!!!
Day
21
Can't
find the email….
Day
22
I
didn’t write much
yesterday as I was
disappointed with Corbyn’s
level of participation in
the home treatment. One of
the main premises of the
treatment is the behavior
change that is required. I
think Corbyn is a great
example of the clinic
phenomenon that we all
know so well (An article I
read, "He can but
does he?" does a
wonderful job of
describing it). Although
she can use her R hand to
do SO many things now…I
fear that she won’t do
anything with it all.
Until she decides that it
is important FOR HER and
not for me or for Sabine
or for her Grandfather or
other family members, it
just won’t matter.
The
only thing I can say is
that it is truly amazing
that without EVER having
function in her hand her
brain was able to
reorganize and find a way
to make the arm, elbow,
wrist, and fingers work!
So, now she knows that she
can do it if she tries
hard enough. Maybe when
she’s older, she’ll
want it more. She’ll
have the self-control and
discipline that only comes
with maturity and an
ability to delay
gratification.
I
can also say that I will
not have to feel guilty.
For those of who are
parents or work with
families of children that
are impaired
(phys/mentally), you are
aware of the
"mommy" guilt
that is associated with
any problem the child
experiences (particularly
in those cases when the
defect was congenital). I
can say that I have done
EVERYTHING in my power to
help this child. She had 9
½ years of OT, 10 ½
years of PT (and is still
ongoing once a week), 2
years of ST (plus 7 years
(ongoing) of ST in the
schools), numerous tutors,
and lots of assistance and
support from other
teachers and from her
family. In addition, she
has now completed a very
comprehensive, time
consuming, not to mention
expensive, treatment
protocol over the last
month. She is equipped
with the knowledge, the
strategies, and the
ability…only SHE can do
the rest. It is not my
guilt anymore…it is
hers.
If
it sounds like I don’t
believe in CI therapy
anymore…that is NOT THE
CASE. It is a wonderful
treatment that has been
clinically proven to
provide substantial
improvement to the
impaired limb (and it did
in Corbyn’s case too). I
do think more research is
needed with kids who’ve
been impaired since
birth..so not a loss of
function…but a NEVER had
function to see what
happens in their case. I
will be keeping careful
records of Corbyn’s
progress over the next 3
months, 6 months, 12
months and then 24 months
with the intentions of
writing up the case study.
Sabine seemed marginally
interested in doing with
me…if she won’t do it,
I’ll do it alone.
It
would be interesting to do
a study on younger
children, affected since
birth, to see if you can
PREVENT the learned
non-use. I would suspect
you CAN! In Corbyn’s
case, she is functional
for so many things with
ONE hand only. At this
point, that behavior is
hard to change b/c the R
hand is still MUCH slower
than the L. Although using
2 hands WOULD make the
task faster (pulling up
pants) it will take more
practice to get the R hand
fast enough that she’d
do it spontaneously. We’ll
see what’ll happen.
WHO
KNOWS…MAYBE CORBYN WILL
SURPRISE ME! I WILL CROSS
MY FINGERS, MY TOES, AND
MY HEART.
-----------
Well…there
you have it…It was a
wonderful experience!
Let
me know what you think!
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