SEPTEMBER UPDATES

Thu. 9/30

Today Bean moved her left arm as if trying to become

more comfortable several times during the day

Bean seemed bothered by the MNS today, but very alert

and determined about how it bothered her.

Kathleen touches others. We are all hoping for the best for you Gina!

Also, here is an article on the other benefits of Botox.

Wed. 9/29

Kathleen bit her lip today and seemed scared for a
minute. 

Bean had a GREAT speech therapy session and made

lots of cooing and sighing sounds today. She seemed

really alert today.

Kathleen had applesauce today and made “mmm” sounds.

Bean went to sleep right after her hard work. She often

seems to conk out after giving concerted effort.

Kathleen continues to be tight with lots of tone
especially in her wrists and fingers.

Please Read: For those visiting Kathleen, please make sure to put on

her braces every 2 hours. The braces are very important in her

rehab regimen and her over-all looseness. Thanks so much!

Here is a Saratoga Falcon article on Kathleen.

Tue. 9/28

Kathleen threw up a small amount of her carrot juice

this morning. She stood easily for 30 minutes and had

a generally non-eventful day.

Here is a letter from Cece.

Mon. 9/27

Wonderful article about a stem cell facility the

Davey's considered and then rejected for treatment of

Kathleen.

Sun. 9/26

The Davey's let Kathleen skip her therapy this morning

and sleep due to her restless evening Saturday night.

Today she moved her arm several times in a non-spastic

fashion (purposeful) for the first time since her

accident other than when she has been in pain.

Kathleen responded "unh-uh" when asked if she wanted

to go inside and go back to be this afternoon while

she was in a wheelchair. The response was witnessed

by two people.

Kathleen said "huh" tonight on the phone when her

daughter Samie asked her to say "Hi". Samie was

incredibly excited and almost brought to tears. Baby steps....

Sat. 9/25

Kathleen was "jumpy" all day.  Her fingers, hands, and
wrists seemed especially sensitive.  Bean got in the
wheelchair twice (150minutes and 60minutes),  She
seemed a bit more comfortable when she was in the
chair, but in general was uncomfortable and possibly
in some pain throughout the day.  Kathleen took some
tylenol in the evening but still had a restless night.

Fri. 9/24

Kathleen stood for about half an hour.  She slept
through her neurological exam by the Kaiser
physiatrist who then called Kathleen entirely
unresponsive.

Kathleen did very well prone on her belly for about 30
minutes and was alert afterwards.

Nearly one month after the Davey’s requested a doctor to
come evaluate Kathleen for a botox treatment to manage
her tone in her wrists and fingers, a physiatrist from
Kaiser came to Almaden to evaluate Bean. The doctor tried

to administer medication that was previously discussed with

Kaiser to not be given to Kathleen. Here is what happened as

explained in a letter from Mike.

Thu. 9/23

Kathleen had tough night last night. She didn’t sleep much.

In the morning she threw some of her medicine. She bit her lip

and now has a significant gash. She is taking Orabase for the pain.

Kathleen again made lots of noises during the day and also some

on command. She had trouble relaxing again tonight

and was still awake when Mike left the hospital at 1am.

Wed. 9/22

Today, Kathleen was great as far as her tone. Very

relaxed. Her left leg looked great while her wrists

were status quo. Kathleen's speech therapy was also

better as she made some soft cooing sounds. The day

nurse insists that after ST ended Kathleen whispered

"hi" 3 times. Nobody in the family heard this

however.

Therapist from Valley Med think that Kathleen is

getting excellent treatment while at Almaden.

This evening, Kathleen was again (3 nights in a row) a

little less comfortable and found it difficult to

relax and go to sleep.

Tue. 9/21

Kathleen's tone in her wrists and fingers which had

been decreasing since Saturday suddenly spiked today

again. It was very difficult to move her wrists back

to a neutral position. Yet despite this, three weeks

after a request for a consult by Dr. Chin at Almaden,

No Kaiser PM&R has come to see Kathleen to consult

regarding Botox.

The Davey family wishes to express their condolences

to the Frandsen family. Dave and Tracie's courageous

son affectionately know as D. J. passed away last

Thursday and services were held at the Santa Clara

Mission tonight. The church was literally enveloped

by well wishers and friends of this spirited young

man.

Here is Mike's letter to Bean about his evening.

Mon. 9/20

Kathleen was again very loose and relaxed today. She

was very sleepy and slept through most of her speech

therapy session. Apparently her median nerve

stimulator was turned off for some time which probably

contributed to the drowsiness.

Sun. 9/19

Kathleen threw up this morning just after her morning

snack. She was probably put into the chair too soon

after eating.

Throughout the day until the late evening she was very

loose "jelly like" and did a great job holding her

head up while sitting on the side of the bed. During

the late evening she tightened up considerably and

looked uncomfortable

Sat. 9/18

Kathleen got in the chair today twice.  The second
time she was up she had a BBQ dinner with her
immediately family, two tanned newlyweds, her mom, and
her brother who flew in from Arizona.  During dinner,
her eyes repeatedly seemed to follow those who were
speaking.

Kathleen went in the standing frame for 25 minutes,
did her normal Beckman exercises and slept through the
ballgames on the television during the day.  As she
would say "It was her only defense."

Fri. 9/17

Kathleen seemed a bit looser today, sat up in the
chair today twice, stood on the standing frame and did
some really good mat work (on her stomach prone and
also resting on her elbows)

Kathleen's huge knot continues to visibly bother her

Thu. 9/16

Lisa worked with Kathleen to improve her range of motion in her

arms and hands using the air splint.

An observation was made that Kathleen seems to be more

tired during certain parts of the day and that it may be due to not enough

down time between therapies. Her tone is also tighter which may be due

to a change of meds.

Here is a letter from Gina.

Wed. 9/15

Kathleen was unhappily awakened from a deep slumber

this morning for a speech therapy session which

included e-stimulation of her vocal cords. Kathleen

lightly protested (on the exhales which is very good)

as seen here and went right back to sleep after the

session ended.

Kathleen got up in the chair twice today and again had
an easy time on the standing frame.
 
She was very sleepy today but seemed bothered by a
nearly walnut sized knot in her shoulder muscle.
 
Kathleen had another speech therapy session in the
afternoon. Therapist are beginning to log her sounds
and continue to work on her verbalization.

video clip of Kathleen

You may need quicktime for the video clip to work. It

can be obtained free for pcs and macs here.

Tue. 9/14

Kathleen had good speech therapy this morning and a

tiny bit of applesauce for the first time in about a

month

Kathleen sat in the chair just once again and also

stood for about 30 minutes in the standing frame

again.

Kaiser's Regional Appeals Committee "evaluated" the

appeal regarding Kathleen's casting to regain lost

range of motion so that she could, among other things

stand up. Kaiser again denied that they had to pay

for the casting stating that their own evaluation by

Dr. Elizabeth Sandel showed that "casting might lead

to skin breakdown and would not be a benefit in terms

of positioning." Thus, quid pro quo, Kaiser feels

Kathleen is not required to stand (even though studies

show it can help facilitate brain recovery, it is a

functional act, and it reduces spasticity and tone).

In fact, in Dr. Sandel's report, which the Davey's

have obtained, Dr. Sandel did not recommend casting

"unless further range of motion is lost." When

further range of motion was lost (witnessed by the

family, nurses, and therapists) and the family again

requested casting for Kathleen, the appeals fell on

deaf ears. Again, with Kaiser you can "thrive"

(unless you need treatment).

Mon. 9/13

Kathleen cruised through a 30 minute session on the

standing frame with apparently little effort.

Kathleen began the gradual increase of her

neuroregenative extract

Kathleen is still waiting for her a physiatrist from

Santa Clara Kaiser to come to Almaden to consult on a

possible botox injection to help her spasticity. It has been

over two weeks since the request was made. The Davey's

have been told that a new doctor has been hired in who will be

coming out to see Kathleen.

Kathleen continues to do her oral motor Beckman

exercises. Studies as of late have shown that stimulation, such as

this (web link) particular of facial and mouth muscles

can aid in recovery of communication and brain

repair).

Sun. 9/12

Kathleen got up in the chair just once today.  While
there she got into the sun for a bit and then seemed
fairly responsive eating ice and seeing colors during
therapy.

Kathleen got lots of kisses from her daughters this
afternoon.

Kathleen did her Beckman facial exercises this evening
and during the night made many cooing noises.

Kathleen had her second day of the neurogenic
vegetable extract this evening with carrot juice
without incident.

Sat. 9/11

Kathleen will begin the nutritional supplementation
case study today.   See www.br13.com  No improvements
from the extract should be expected for at least two
weeks as the initial protocol is for preparing her
system for the additional extracts.

Kathleen received a speech therapy session today and
a facial massage from her friend Lisa (an OT) which is
designed to loosen her jaw and help her potential
verbal skills.

Kathleen now has air casts for her wrist and knee
which seem to be helping prevent further loss of range
of motion due to her tone.  Her feet seem to be doing
fine after the last casting (despite Kaiser's
assertion it was unnecessary) because she is now able
to stand almost daily and also maintain her range by
being in the cast every other 2 hours.

Kathleen got up in her chair twice today.  The second
time she was surrounded by her family, friends, and
screaming children, nieces, and nephews.  The family
invited some of the Almaden staff, who have been
absolutely wonderful, to share in their bbq.

Fri. 9/10

Kathleen is ready to go on the neurogenic diet (from
the research group in the UK) and is awaiting final
contacts between the Kaiser doctor here and Dr.
Grinstein in Britain prior to replacing her evening
dose of sinemet with the vegetable extract.

Kathleen had a good day and was making many cooing
sounds on her exhale.  For some time, once again, she
did it on command.

Kathleen's OTs are working on her wrists (which are
really effected by her tone) and examining the use of
air casts.  They have recommended botox injections,
but Kathleen is waiting for a visit from a Kaiser
physical medicine and rehabilitation doctor first to
approve of the procedure

Although nothing can alleviate the pain our family
continues to suffer, except a miracle, the letters,
good will, and financial help of our community
certainly reflects something about our world that the
nightly news seems to ignore.  Witness the following
two letters.

There are still currently a few holes in the visitation schedule for

the upcoming week. If anybody could help in that area the family would

be grateful. Open Visitation Spots

Thu. 9/9

Kathleen had a good day. Her progress in therapy

didn't measure up to Tuesday's steps forward, but she

stood in the standing frame, sat in the chair for 3

hours and had a good speech therapy session after she

finally woke up.

Here is letter to Wilson Sonsini and Onetta from Mike.

Wed. 9/8

Kathleen had a more typical day today sitting in the

wheelchair twice for about 2 hours each time and

standing in the standing frame for about 15 minutes.

Her head control was not quite as good as yesterday.

Kathleen did a fair amount of swallowing while she was

with the speech therapist today.

Kathleen seemed agitated in the evening and took quite

some time to settle down and go to sleep

World newspapers are finally starting to get the idea

that nutrition, as we told Kaiser months ago, can have

a significant effect on the brain. Blueberries,

omega-3 etc can impact both brain breakdown and

repair.

http://seattlepi.nwsource.com/health/189358_condor06.html

http://www.foodnavigator.com/news/news-NG.asp?id=54521

http://www.theglobeandmail.com/servlet/ArticleNews/TPStory/LAC/20040908/HBECK08/TPHealth/

Tue. 9/7

Kathleen enjoyed a beauty treatment this morning and

in particular a facial.

Kathleen vocalized on command and took deep breaths to

try to vocalize louder when asked. She did this a half

of dozen times and not randomly. Her speech therapist,

Kathy Castillo, OTs Michelle Tipton-Burton and Lisa Moriarity,

all witnessed the events and had no doubts about her responsiveness.

There are currently a few holes in the visitation schedule for this

week. If anybody could help in that area the family would

be grateful. Open Visitation Spots

Mon. 9/6

Kathleen got up once in the wheelchair for 2 hours

today after her kids raced around in the chair a few

minutes before..

Kathleen visibly flinched for the first time when Mike

brought a new lavender bear (a lavender smelling gift

bear from the bride who loves to shop with Kathleen at

Origins) up to her face. It seemed apparent that she

saw it. Earlier doctors told the family she was

cortically blind, but there have certainly been doubts

about that as of late.

Kathleen also had a good session with the speech therapist

and drank 4 spoons full of water

Several emails and personal contacts have asked Mike

"how could Kaiser not give Kathleen coverage for her

casting?" Kaiser's justification is:

"The casting of the member's feet and wrist were not

prescribed authorized or directed by a plan physician,

therfore coverage is your financial responsibility."

Thus Kaiser, which helped cause the problem by not

doing enough to address Kathleen's chest pains and

fainting episodes... helped cause the problem by

failing to provide physical therapy until the

contractures existed... refused both professional

advice and family pleas to cast her based on Kaiser's

premise that it "might lead to skin breakdown" (which

it did not). Finally, when the family was virtually

forced out the door due to lack of rehabilitation of

any kind, and one of the foremost rehabilitation

doctors in America - Dr. Englander - decided casting

was the best course of action...Kaiser shifted

financial responsibility to the Davey family as it

wasnt "prescribed" by their plan physician. If you

have Kaiser, remember, "Thrive."

Here is a letter to Kathleen from Barabara.

Sun. 9/5

Kathleen's day was highlighted by a 4 1/2 hour visit
home.  Kathleen seemed relaxed at home visiting her
family room, kitchen and backyard.   She probably
didn't enjoy being the center of the activity, but
certainly liked seeing her daughters dress for the
wedding and do her makeup.  She was very loose during
the entire stay and had no problems riding in the van
in the wheelchair.

Kathleen would have been proud of her sister in-law
and good friend Kimberly during her wedding and
reception.  Kim handled the day with style and grace
and kept Kathleen in her heart throughout.  Kim and
Alvaro toasted using the Champagne glasses Kathleen
bought them.  Alvaro's love for Kim and kindness to
the flock of kids at the wedding would also have met
with Kathleen's approval.  Congrats to Kim and Alvaro!

Kathleen seemed tired after her return from the house.

Here is a video clip from the wedding reception.

Sat. 9/4

Kathleen sat up in the wheelchair today 3 times today. On another occasion she did

very well sitting on the side of the bed and showed tremendous head control.

The night nurse said that Kathleen said "Hi" to her after she said "Hi Kathleen."  No

verification of this so excitement is muted but just under the surface. 

Kathleen's tests at Santa Teresa Kaiser were negative for a blood clot.  Apparently it has

Dissolved, thus, Kathleen's blood thinner has been discontinued.

Fri. 9/3

Kathleen was transferred to Kaiser Santa Teresa this morning to check on the status of her blood

clot (DVT) in her left shoulder area. This test will help decide on her treatment.

Before Kathleen left she was fitted on her standing frame (which the family purchased).  Some adjustments
need to be made, but Kathleen did well for a first time.  The Davey family would like to thank Sue and
Jim for selling her the frame at less than a fair price.

Thu. 9/2

Kathleen went to sleep late last night and when she woke up this morning

was drowsy but very loose. She held her head on her own for periods as

long as 4 minutes on her own while she was in her wheelchair.

Kathleen was transferred to Kaiser Santa Teresa this morning to check on the

status of her blood clot (DVT) in her left shoulder area. This test will help

decide on her treatment.

The Davey family has received contact back from an email inquiry by a researcher

from the UK regarding a treatment program which has shown success in patients

with Parkinson's Disease. They believe that the treatment can be extended to

patients such as Kathleen. More information on this soon.

Here is a new Saratoga News article.

Wed. 9/1

Dr. Chin and the Kaiser team moved quickly to get Kathleen on a monitor which will

alert nurses if there is another apnea incident.

Kathleen got up twice in the wheelchair for briefer periods today (as she was very tired from last night),

but was a trooper and stood on the standing frame for the normal duration of 20 minutes.

Kathleen's tone was significantly looser today

Kathleen stopped breathing this morning but she is okay. Quick thinking by the CNAs

and nurse on duty allowed her to restart her breathing again before the ambulance arrived.

They believe that sleep apnia may have caused her to stop breathing. Alarms and/or

breathing aids are being looked into as a solution long term.

Kaiser Permanente is a "not for profit" organization that somehow feels

obligated to run a 40 million dollar advertising campaign. This new

advertising campaign is known as Thrive (http://www.kaiserthrive.org/) and

stresses preventative medicine. It touts exercise, blueberry juice and physical

therapy yet apparently thinks that Kathleen is unworthy of such treatment.

Kathleen came into Kaiser four times complaining of chest pains and fainting

episodes and was told she was fine - only an EKG was needed - no heart monitor,

echo etc. After her subsequent cardiac arrest they initially denied the family's

request for blueberry juice and for five months denied physical therapy to

avoid wrist and foot contractures. When the family asked for casting to prevent

further contractures, this PREVENTATIVE treatment was also denied. When the

procedure was completed at Valley Medical Center without a hitch, the family asked

Kaiser to cover it under the health care plan. Today this request, like

so many others, was denied. Apparently preventative medicine to avoid Kaiser's cost

is okay, but not when Kaiser Permanente has to pay.

Please Read: The Davey family would like to know if anybody in the community has information about Neural Brain Stem Cell, Cord Blood research, and  brain recovery therapy. At this point, apparently the research in these areas are very recent and are all experimental right now. The Davey’s are interested in perhaps leaving this option (of considering Kathleen for experimental procedure) open.  Apparently studies are now being done on stroke victims and Parkinson’s patient, yet studies on anoxia are not ongoing.  If anyone knows how this process may be initiated please let the webmaster know.  If any doctors would like to view a summary of her condition they can view it here.