From:
       faithful@discover-net.net
                                                6:57 PM

 Subject:
       Monday, March 22, 1999: Long-awaited CHRISSY
       UPDATE!
 
 
 
 

Chrissy has been continuing her phenomenal progress!  (The lack of
communication on MY part is in no way indicative of HER condition, and it
is only a result of my fighting with my computer issues after scheduling a
memory upgrade and color printer installation.  I continue to apologize!)

When my daughter and I last visited Chrissy, she was surrounded by girl
friends who had come over to be with her.  When she's not in therapy, she
has visitors and family members to be with.  She has returned to her
upstairs bedroom, and now negotiates up and down the stairs (but ALWAYS
with much support and assistance of her parents!)  She has her full
strength back, but just hasn't regained her coordination and balance yet.
Therefore, she would be at great risk of falling down the stairs if she
were to attempt them without support.  The large staff of therapists that
have been working with Chrissy these couple months said they'd be willing
to explain about Chrissy's recovery, current progress, and future prognosis
to any of us that wanted to know about it.  They were kind enough to come
to a Wednesday night church service to talk to Chrissy's friends and
family, and to answer any questions.  I'm going to outline the highlights
of what they said, to give you a full picture of how Chrissy is doing.  It
is also an excellent window into what other people in similar situations
may be going through, and may help in understanding how to communicate or
interact with others as well.

Chrissy is in a coordinated outpatient program, and the goal was to get her
home with her family.  The core program and its workers' job was to get her
medically stable and manageable by her parents and back at home.  She was
then to return for therapy at the hospital every day.  She sees the
physical and occupational therapists every day as well as a nutritionist to
monitor her nutritional intake.  She also sees a wonderful psychologist
once a week.  She sees a music therapist which helps her because the human
brain stores language in a different area than music.  So if you have
damage in an area that doesn't understand language, you may be able to
understand in a different way if you learn it through music!

The first therapist to talk was her speech therapist.  SHE thanked everyone
for their prayers for Chrissy, as well!  She not only works with "talking,"
but with swallowing issues, cognitive issues, how the brain works and
thinks, and how to get from "Point A" to "Point B."  Chrissy's thinking
(cognitive, reasoning, whatever term you want to use) was in a reduced
state of consciousness during her coma.  Everyone feared whether she'd know
you, recognize you, be able to communicate, eat, etc., once she came out of
the coma.  They soon realized she was able to understand people and follow
their commands, although she wasn't able to speak yet.  She learned sign
language very quickly to communicate her basic needs, and the signs for the
names of her family and friends.  She initially was not able to swallow,
but the speech therapy department monitored her as they began with ice
chips, to water, to pureed foods, and she moved very fast through the
progression, and was very hungry when she began to feel good!  Her memory
is intact.  She remembers things from before the surgery, and has no
problem with her memory.  She's re-learning some reading and math skills,
that's been a little bit of a struggle.  Regarding Chrissy's communication:
initially, Chrissy had a tracheotomy and she wasn't able to speak, so she
learned how to do sign language.  Of course, the ultimate goal was to
re-gain her speech, so they had to help her coordinate her breathing with
getting her vocal chords to move and getting sounds to come out of her
mouth.  They worked a lot at getting her to hold her breath and then to
blow her air out, and then to learn to form that air into whispered words.
Eventually, her voice started to return, but initially she was able to only
utter a one-syllable word on each breath.  Eventually it got to be a couple
syllables, and she's now up to about four or five words on a breath now!
Think of the energy it takes to use all of your air to get one or two words
out!  Chrissy knows she doesn't sound like she used to, and doesn't like
it.  Her speech is slower, her pitch is lower, she can only get a few words
out per breath, and she's still at a monotone to a degree, and they're
working on improving all of that.

Chrissy's occupational therapy works with grooming, eating, bathing,
dressing, upper body strength, how to get the fingers to do what they're
supposed to do, and particularly with Chrissy, how to regain her ability to
play the piano, and fine-tune those fine motor skills necessary to do that.
Chrissy has come a long, long, way from where they started helping her!
They also work with Chrissy's upper-body functioning and her arms.  At
first, it was a struggle for Chrissy to hold her head up for a couple of
minutes!  She needed two or three people just to hold her up, in order to
sit at the side of the bed!  Her left arm and fingers were just beginning
to move a little bit, and her right arm was not even working at all!  NOW,
Chrissy can move both of her arms any way she wants to, and they are nearly
at normal strength!  She still has trouble controlling her movements
smoothly, due to the surgery and damage to her brain.  She's still
struggling with it, but now feeds herself and writes with her left hand.
She's also working on visual perception skills.  She has trouble focusing
her eyes, and still sees double vision!  Initially, no one knew this, but
she's had double vision ever since the surgery, but she wasn't able to tell
anyone.  They now place a temporary eye-patch over one eye or the other,
hoping that the eyes will strengthen on their own, and eventually she can
remove the eye patch.

Then, Chrissy's physical therapist spoke, and said that HER Pastor spoke to
her congregation about how being a part of a miracle or a part of someone's
recovery process is really a blessing, so all of us have really been
blessed with what's been going on here.  It also goes around full circle,
and Chrissy's family feels the blessings, and we feel the blessings from
what's happening.  When the physical therapist first met Chrissy, she had
very weak movement in her left knee and her left hip and that was it!  She
re-tested her strength in her legs yesterday, and she has NORMAL strength
in her legs now!  The first month that they began to work with Chrissy as a
team, it became a part of the daily conversation that they've never seen
anyone progress as quickly as she has!  Chrissy is still anxious however,
to return to her former abilities, and no amount of speed in her recovery
is ever fast enough!  Regarding mobility, she has very good strength now,
but because the tumor and surgery were in the back of her brain, that's
where her balance and coordination are severely affected.  Walking is very
hard for Chrissy, although she's been walking for some time, and she's MUCH
better than initially.  It is very tiring though, and she walks several
different ways now.  She'll walk arm-in-arm, and with her walker with
wheels.  She also wheels herself in her wheelchair, although she still has
some difficulty steering accurately or with speed, but she needs the
practice as part of her therapy.

During the questions and answers portion, someone asked when Chrissy would
be back to normal.  The answer was that they don't know if she EVER will be
back the way she was, because of the extensive surgery she had, and because
of being in the coma.  She'll be BETTER though, and functional, and will
probably be continuing therapy for yet another year.  She said that Chrissy
has had the MOST support of any child they've ever worked with, and that is
very sad when other children don't have that support -- they may have to
call on all of us to adopt!  (laughter from the congregation followed her
joke)  She said that one of the greatest gifts she loves about working in
the therapy department at that hospital, is that they represent a ton of
different churches and when they get people on a prayer chain it is a HUGE
prayer chain!

They explained about the music therapy, and said that they take the goals
of all of the other different therapies, and incorporate them into MUSICAL
therapy as well!  Chrissy is working with several different instruments,
and writes some rhythms, and incorporates movement to the music, and she
hopes the music will help Chrissy regain some inflection in her voice.  One
of the songs that Chrissy sings with the therapists regularly is "Jesus
Loves Me."

Chrissy is still going to therapy five days a week, but two of those days
are now cut back to half-days.  Initially, they reserved a hospital room
for Chrissy to rest in, during a mid-day break, but she no longer needs to
rest during the day, but most of the time, she needs a SNACK!  They also
have a recreational therapist who works with Chrissy to get back into some
of her hobbies, and coordinates some community outings.  Chrissy went to
see "A Bug's Life" with her little sister, and one of her other therapists,
and also went to the mall to pick out a new dress, and went to the
bookstore with them, and they're trying to help her feel comfortable
getting back out into the community.

One of the therapists spoke several times about how their goal is to
preserve Chrissy's "special-ness."  Yesterday, Chrissy told her Grandma
that she wanted to throw a snowball at a physical therapy assistant that
she's been working with!  When she arrived at the hospital, she packed some
snow into a ball, carried it into the hospital, all the way up to the
physical therapy floor, and into the therapy gymnasium where she threw the
snowball at the assistant and hit him straight in the chest!

That concludes the therapists' presentations, and my Pastor thanked them
for coming, and said that we should thank the Lord for people with
compassion that love and help people in trouble.  We also prayed for
Chrissy as well, that the progress will continue and even accelerate, as
with God, all things are possible!

As Chrissy continues the grueling day-to-day WORK of getting better, I will
continue to bring your encouraging letters to her.  Understandably, as she
is no longer in a critical state, and is well on her way to recovery, the
volume of e-mails has dropped off.  Quite some time may pass before I send
out another "Chrissy Update," if everything continues to progress as
expected...  I want to thank all of you that have written to Chrissy,
whether it was once, or twice, or continually!  I am eager to correspond
with any of you that continue to write to her, (and whenever Chrissy gets
her own e-mail address, she may be able to correspond as well).  (I may be
a bit SLOW in responding until I get my computer all straightened out,
however!  I still apologize!)  Thank you for praying for Chrissy, for
thinking about her now and then, and for your compassion towards this
wonderful little girl!  God bless you!

Sincerely,

Danica

 

                      Will You Continue to Pray for Chrissy?
 
 

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