Test Results

My grandson definitely has Charcot-Marie-Tooth
Disease.  After a careful examination, the
neurologist said his particular case was worse,
more progressive than other children.  He was
discussing his ability to run and how that would
be affected first.  I explained that he had NEVER
been able to run.  He then attempted to get my
grandson to stand on one foot which he was
unable to do.  That is when he told us that his
disease had progressed much farther than
was usual.  He also said, in response to his
father's statement regarding how much
exercise his son got over the weekends, that
he needed to be careful to exercise because
it would be easy to cause bone fractures in
a child such as he.

His father after leaving stated he was not
giving up--that he felt it could be reversed
with enough exercise.  This was said to me
only.  I replied, "Do you ever listen?  This is
about (son's name), not you.  He is fragile.
Do you remember what you said when he was
two years old?  You told me that he was put
through all the genetic  testing and there was
nothing wrong with him and I replied back
that just because those tests were negative
didn't mean there was nothing wrong with
him and I knew (clinically speaking, as a
nurse, normal, he (grandson) wasn't
normal.

The first time he was taken to a developmental
pediatrician, He was diagnosed as Autistic,
Pervasive or Global Developmental
Delays and Hypotonia.  Later ADD and
then HDAD was added.  His initial
pediatrician was on the correct track
when she ordered genetic testing
especially for Muscular Dystrophy.
The Heman Genome project had not
been completed at that time;  all the
test results came back negative.

Last year my grandson did well in
school; he was behind but only by
6 months.  This year, in the second
grade, he has went backwards, only
able to read 3 letter words, and simple
ones at that.  The neurologist knew no
reason for this, and an appointment was
made for genetic counseling. That will
take place Jan. 28.  The next custody
hearing is on the 23rd..  This driving
him 46 miles one way to school is
insane and my daughter has been
trying to get a hearing since this summer.
Each month it has been postponed.
A special needs child's needs have
been overlooked. Ignored.  Plus,
his father does not try to understand
what is wrong with his son.  To quote
him, "Why bother finding out what is
wrong with him when there is nothing
that can be done?"  He just didn't want to know
that something was wrong--and it was traced
back to him, and to his mother.  His Dad
played football, very unlikely that his side
of the family contributed the one gene
necessary for this disease.  His mother's
sister had severe scoliosis the same as
grandson's father.

In my family tree, there was one case of
scoliosis in one aunt.  None of the children
had it or any type of leg weakness.  Two
members had psoriasis, and three members
had Raynaud' syndrome.  One uncle died
of heart disease.  Most family members
as they aged had hypertension.  One aunt
had history of strokes, and her youngest
daughter also had stokes.  That same daughter
also had severe life-threatening allergies--and
I alsohave a history of severe allergies.

My daughter inherited skin allergies from me
and flat feet from her father.  No problems
with heart or blood pressure.

I have a neice who has Durcum's disease,
which causes lipomas throughout her body.
I know I have 2 lipomas, mine are not
painful and not very large.  Hers are painful
and large.

Other than history of stroke, diabetes and
severe scoliosis, and now, the Charcot-Marie-
Tooth disease, Type 1A, that is only history
known from father's side of family.  They
tend to be closed off, not communicative
regarding family history.  Neither my
grandson or his father have reflexes in the
feet or legs.

All for now

Kate Thorn

Rain on Christmas

This morning it was foggy; tonight it has rained and
rained. We ate so much a lunch/dinner that we
were too full to do anything but lounge around.  My
daughter had to go work tonight.  My grandson had
to go to his Dad's,  so the house is quiet and
peaceful.  My partner, after cooking a wonderful
meal, went to watch a ballgame and fell asleep.





So now it's only Daisy and I holding down the
fort this rainy night.  I am listening to Pandora,
the folk Christmas music.  Soothing, peaceful.
Some of it is definitely more classical than folk.
I prefer that actually.





Tomorrow is the day we go to the neurologist
about my grandson.  I will be so relieved after
that appointment.  Then to get busy on my
book again. 





Frankie was back on the front porch eating
his dinner tonight.  She/he is so neat and tidy
regarding eating.  There is never a crumb left.




I was reading in one of my gardening books
regarding pennyroyal.  It deters fleas and
mosquitos.  I wasn't planting it due to the
poisonous warning.  I imagine outside creatures
already know this.  I lived in a huge house once--
there were plenty (too many) spiders in the basement,
I put one drop of pennyroyal in the corner
of each room.  I never was plagued with
spiders.




All for tonight





Kate Thorn

Winter Birds and Dizzy Daisy

A new bird was spotted yesterday afternoon.
It was either an Orchard Oriole or a Baltimore
Oriole.  I couldn't determine which in that short
time period.  There was a large woodpecker
spotted.  My partner said it was a pilieated
woodpecker, but I saw it today and was able
to use the binoculars--and I don't know what
kind it was.  I didn't see any red, as it was facing
me.  It was all gray breasted with a dark band
of black around his neck.




At the feeders today, the chickadees, and
nuthatches were so busy zooming in and out.
They were taking turns. Seriously.  One would
wait, perched in the tree, while another one
would feed.  The one waiting would fly in
as soon as the other left.  Daisy couldn't
even nap.  She was crackly meows and head
moving back and forth as the birds switched
places.  She was tuckered this evening.
Been doing nothing but sleeping.




Something is chasing away Frankie--
definitely not a cat--the dry cat food was
still there--only the egg salad was missing.




All for tonight



Kate Thorn

Daisy Gets a Christmas Card

Yes, Daisy got a Christmas card yesterday!
From my partner's Mom--

"Dear Daisy, Here are some playmates
until I return,  I shall bring goodies for
our snacks and 2nd breakfast.  Tell Kate
to take good care of you and love you
a lot.    Love, Granny Anne"


Daisy has never had a grandmother
before, and she loves it.  The joys of
a granny for Daisy include frequent
hand fed snacks.  If Anne eats, Daisy
eats.  After her last visit, Daisy is
absolutely insistant on having some
(only a little bit) lunch.

Daisy is so insistent on lunch that she
is not to be ignored.  I just can't scold
her for harassment--she has heart
disease--I can't fuss at her.  We
count each day she is with us as
a blessing. 

My niece has a dog that is as
personable as Daisy..  If you say
the "F" word, the dog takes off
and runs downstairs to the basement.
I am serious!  And this isn't the
cursing F but the casual F.  Bad
language isn't tolerated by her
dog.  Not at all.  Just as Daisy
complains that all bedclthothes
must be without wrinkles and I
am to lay very still or she will
get out of bed and stalk off.

My partner has been eating a
lot beans, and excreting noisy
gas.  He made the mistake
of doing such after picking up
Daisy who gave him a hard look
for such an offense.  Today he
picked her up, and she noise-
lessly returned the favor.  I've
been on the receiving end--
and seriously, I had to shower
and change clothes.  That bad.

All for now.

Kate Thorn

Frankie

Frankie is eating on the front porch now, since
the large possum ran her off.  Last night, my
daughter and grandson watched through the
window as Frankie ate.  It was the first time my
grandson had seen Frankie--especially close up. 
We watched as she meticulously cleaned her
plate, then she ever so politely left. 




Daisy, on the other hand, did not have a good
night last night.  I ended up giving a 1/4 of a
Lasix tab after I had given her Benazepril  3
hours earlier.  Her cardiomyopathy kicks up
about once a week, but even then, in the
mornings, she has designated bird
watching times.





I'm hungering for Spring--wanting to plant
flowers and veggies.  I really hate waiting.





Part of Christmas present was a new bathing
suit and a one-month Y membership.  I am
looking forward to going.  I am starting my
plan to try to improve my physical health early
this year. I found some Yoga and Tai Chi DVD's
on Amazon. I haven't decided which to get. 






And--You do know as long as believe in
Santa, he'll come to see you.  Bailey asked
about whether Santa was real or not.  I
dodged and told him about my daughter's
favorite Christmas.  Santa brought her a tree
that year.  He said,  "A tree?  Was it
decorated?"  I told him that Santa did things
right--of course it was decorated.  Then I
told him that she got a puppy and a train
set the same year, but her favorite
thing was the tree.  She truly believed
in Santa magic. 





Christmas is nearly here.  I need to start
making cookies and caskes.  Focus on
the positive side of life--the many things
I have to feel grateful about.





Merry Christmas!




Blessings to all!




Kate Thorn
 

Frankie---and Jonnie and new pictures

Interesting turn of events--we have been feeding two Possums.
The bigger one that eats so much I named Jonnie.  Franlie, my
friendly possum, showed up on our porch after some catfood
I put out.  I wanted to see if the two possums were only one;
my partner assured me they were two, not one.  My Frankie,
the little possum who grins at me and seems to know his name
was the only one on the front page.  I guess from now on,
Frankie gets his meal at the edge of the porch.





The Christmas tree was put up last night.  Pictures of the tree
and fall and winter scenes to follow.

Xmas tree 2012

In case you can't read this --it is bird reading a book on people watching

Part of the drive my daughter was court ordered to make --46 miles one way--what was that judge thinking?

Daisy before she became a one eyed cat

Serious Times

Divorce and child custody.  No, you can't get any
more serious than that.  Husband was taken on
Domestic Violence charges. Ten days later at the
hearing, the court was still in session at 6:00 pm. 
The judge convinced my daughter that it would be
in her best interest to drop the charge to a civil one. 
He assured us everything would exactly the same,
but the wording.  One, that was totally false.  He
wouldn't be able to go for custody if convicted of
Domestic Violence.  Two, legally speaking, the
judge was breaking the law by advising her.  I
didn't know that; neither did my daughter.




My grandson needed surgery, minor, but he doesn't
tolerate anesthesia well, so my daughter consulted with her
lawyer regarding letting the father come to out patient
site so as to be near their son.  The lawyer thought
that would a good thing--showing her to be a
reasonable and caring parent.  More about that
later.





The house she was trying to live in was in need of
so many repairs (jointly owned property), that she
could no longer keep up with all the repairs.  We
paid for many of them, and she later paid us back.
When I bought this house, she and my grandson
moved into one end of it.  This was a temporary
measure, until property settlement could be
reached.  We were told that the property
settlement must be settled in a years time.
Maybe that is true is some counties where
law is practiced as it should be.  Not in
this county.





The judge told him to start paying child support
in November of last year.  He started paying
at the end of January, after my daughter went
to the the 4D child support enforcement agency.
My grandson is special needs--in behavior,
in maturity, physically, healthwise, and mentally. 
He is sick a great deal.  He requires a great deal
of therapy--social skills for autistic
children that is available  in this county, but not
the other county.  She is spending money, lots
of it.  Some her insurance covers to a degree.
There is a 1700.00 out of pocket expense and
that is met for  the year.  These expenses do not
cover summer camp programs or the autistic
programs.  In fact, any therapy ordered for autism
is not covered by her insurance.





They went to mediation for a while--then
he went for full custody.  This, my dauther,
didn't see coming.  The same judge who
advised  her to drop the domestic violence
wording, rules against her in the sense that
he gave the Dad part legal custody, in that
he was allowed to go to all the Dr.s
appointments, and therapies and sit in the
same room with my daughter.  My
grandson's behavior started to worsen.
He also lost weight; his eating was fine here,
but Dad told the doctor he wanted
medications changes made as his son wasn't
eating at his house. 





My daughter had picked a church with
her son in mind.  He loved the church.
There were no kids in his Sunday
School other than him at his Dad's church. 
He was required to stay through preaching
which hurt his ears.  If he started his
stemmingautistic behavior, his Dad would
pinch him on the leg.  Never enough to leave
a mark.  He learned about leaving a
mark (a hand sized bruise) when he was
a baby.  Who that cares about their
child that would strike a child that hard
when they're a baby?




The church gave him more time with
his father; grandson was forced to
spend all day Sunday with him, as
well as Friday form 3:00 to Sunday
at 5:00. 






That's the minor stuff.  He ruled that
this special needs child, who was
already enrolled to go to school in
this community--4 miles from the
house--be enrolled in the same
school for the upcoming school
year and that my daughter was to
transport him to said school each
day.  That school was 1 hour and
15 minutes and 46 miles away.
Due to drive back and forth to take
son to school, this ruling by
this judge cost her 600.00 a
month in addition to all the medical
bills her son had.  She has 17.00
left over out of the child support
check to go towards her son.  This
was not justice; this was a mockery.





I am personally so stressed I want
to leave this house that I so love
and move to Seattle--as far away
as I get from that family, and that
county's, toxicity.  Never would I
believed that any judge could be so
cruel and thoughtless, but corruption
is the norm in that county.





Women, like me, who speak their
minds, are not welcome.  The women
are supposed to subservient to the
almighty males--and this, form her
lawyer, who doesn't even want me
in the county the day of the trial.





This county is such a joke that
they put a metal detector in the
courthouse this past year--if you
have a purse or briefcase, you
hand that to the deputy, walk on
through and he hands you back
your purse/briefcase.  At no time
do they look inside of either.  I
couldn't believe it when I first saw
the way they handled things.




All for now.




Kate Thorn

Daisy and Frankie

My cat Daisy is jealous--always has been jealous--but now she's
jealous of Frankie--the Reluctant to be Seen Marsupial.  Each
evening, after dark, usually around 9 PM, I take a paper plate
full of kinds of leftovers from the day.  We take turns preparing
the meal--but the plate is topped with fresh fruit and syrup. 
Yeah, he is one extremely spoiled possum. 




Daisy lurks around the door.  She knows there is no cat
smell, so she don't understand what it is that we're feeding,
but she lets her opinion be known--she is wholly against
our feeding anything but and the birds.  If we didn't feed the
birds, her free entertainment would be gone. 




Frankie lives somewhere in our yard.  Not sure where yet,
but he'll come shuffling through the leaves, if we call him
after we take the food out to the feeder, which is almost
too little for his head.  He pulls the entire plate out and has
himself a fine feast.  He does leave the plate under the shelter
of the feeder when its raining, and still manages to lick his
plate clean.




Daisy is OCD  and a clean freak.  I'm a lackadaisical house-
keeper.  She insists on a neat, wrinkle free bed.  There have
times that the top covers were wrinkled and she wouldn't
allow me to go to sleep unless I straightened the entire bed.
Changing the linens, she jumps in the middle of the bed and
purrs up a storm.   She walked so carefully on my desk, that
I swore I wouldn't let her on, that I cleaned 90% of my things
off it and set them in floor beside me.  This is a "working" desk
with dictionaries, rough drafts of my book, Christmas cards,
and other related things on it.  But she gets her way every
time.  How can you say No to a one-eyed cat with end
stage cardiomyopathy?  She rules the house--no doubt
about it.




All for today




Kate Thorn