It seems that after one of your parents has died, you
no longer count the years by your own birthdays, but
count them from the day your parent(s) died. Today,
one year ago that my father died.
Yesterday morning, Andy woke up with
some blood on his lips. It looked as if he had bitten on
his upper lip. He also had some dark red spots on his arms.
In the evening we discovered a very large blue bump (could
hardly call it a bruise) on his left arm. This morning,
he again had some blood on his lips. Because our own
GP was ill himself, Li-Xia took him to a GP replacing him. After he
read the short letter I had written, he immediately
phoned our paediatrician to make an appointment. Li-Xia
phoned me, and at noon I met with them in the hospital.
Our paeditrician immediately explained that Andy suffered
from low levels of thrombocytes (blood platelets)
and he mentioned the possibility of
Thrombocytopenic Purpura (ITP). He immediately ordered
some blood tests, and we took Andy to the lab. There they
had difficulties finding a vein. Some blood started to come
out before they finally got it in. (Afterwards it turned
into another dark blue spot.)
We waited some time for the results to come back. But
before they arrived, our paeditrician thought it was a
good idea to keep Andy in the hospital. He also explained
to us that he wanted to perform a bone marrow puncture
to rule out the possibility of leukemia or some form of
bone cancer. He explained that it was unlikely, because
Andy did not have a pale face, did not have any fever,
and did not appear very ill.
So, we walked the all to familar
route to the childrens
department and went through the admission procedure. We
waited the rest of the afternoon in his room. We did meet
with his ward doctor, but she also did not tell us more.
Later in the afternoon, we got the results of blood test.
All blood counts were normal (Hb was 8.7), except for
the thrombocites, which were below 5, whereas 150 to 400
is normal. We then also heard that the bone marrow puncture
was scheduled for tomorrow.
In the evening, I immediately dropped a question on the
Kabuki Syndrome Network email list
asking if anybody was familar with this. I did not mention
ITP because I had forgotten the name.
Immune Thrombocytopenic Purpura!
Early in the morning, I found two replies to my question
on the Kabuki Syndrome email list.
Both mentioned ITP. Usually, when ITP occurs with children
it is an acute form, which often heals by itself. With
adults it is often a chronic form. One of the replies
was an acute form, which, with some treatment, was healed
in three months. The other reply was from a child that
had a chronic form. The incidence is 1 out of 10,000 people.
Getting two replies within one day from a group of at most
two hunderd people let me to believe that the incidence
under children with than Kabuki syndrome is at least a little
higher. I printed out the two replies.
When I walked into the childrens department, I met our
paediatrician together with the ward doctor. When I handed
him the printout, he turned to the ward doctor and with
a smile told her: "Yes, we are dealing here with two
engineers. The father by now probably knows more about ITP
than the two of us together." Although, I doubt whether that
was really the case, I was very happy with that statement
because it clearly shows that he does consider us as on
equal levels. Not all doctors are like this.
At first he was a little reluctant to believe that ITP
was common with Kabuki children, because he had not found
any reference to it in the literature, but this afternoon
he came back to Andy's room and
pointed out to me that it was mentioned in the medical
questionair that we filled in for the Kabuki Syndrome
Network. He immediately urged me to update our answers
to the questionair.
At half past nine we went to the operation room,
where the ward doctor, together with our paediatrician
performed a bone marrow punction, not on his thigh bone
but on his hip bone (from the front). It is
a slighlty more tricky way of doing it, but
the advantage is that he didn't need a tube
inserted in his mouth/troat to keep the air
way open while being sustained. It all went
fine. (Except that we had to wait a long time
afterwards. The nurse who brought us did not
feel too well, and reported herself ill.)
In Enschede, there is only one hospital with the name Medisch
Spectrum Twente, which was formed by the merge of two
other hospitals. Because of this the hospital is at two
locations. Some years ago someone calculated that it was
cheaper to build a bridge between the two hospitals than
to use ambulances to transfer patients between the different
departments. (Of course, not all facilities are available
at both locations.) The puncture was performed in an operation
room in the other location, so we had to take Andy with his
bed across the bridge and back. He liked it very much, and
watched all the people that took a bike. Yes, at both ends
of the bridge there are always a lot of bikes parked that
the personel uses. They also have special electrical cars
for transporting full size beds across the bridge, and others
for transporting the food and internal mail. At each corner there
are mirrors, and every some many meters there is a phone, such
that the doctors can answer there calls. At some part of the
bridge there are pictures of all kinds of famous and less
famous bridges. This bridge is possibly the only bridge between
two hospitals build for this purpose.
On the way back, I took a picture of Andy sitting in the bed.
In the afternoon, Li-Xia met our paediatrician
somewhere in the hospital when he walked to the
childrens department to tell us the results of
the bone marrow puncture. It turned out that all
cells were normal. Which means we may now safely
conclude that Andy indeed has ITP. He will be
given prednison as a treatment to start with.
There are some gamaglobulin at
hand, but our pediatrician will only use it
as a second resort. He said that he does not
like blood products because they, although
being of high quality nowadays, always contain small
amounts of "strange" proteins. I agreed with
(reoccurence in November 2003)
The whole day, Andy was in a good mood, except
from being a little lazy. Around seven o'clock
he almost fell asleep in his buggy. When I
understood that I was going to put him in bed,
he started to cry very sadly, as if he knew
he had to stay another night. I too got some
tears in my eye. I managed to get him in bed,
but he did not want to sleep. Around eight
I decided to get him out in order to give
him something to drink. Appearently, he was
a little thirty because he drank 100 ml
milk without problems. Then the nurse came
saying that he should go to bed. She said that
she would put him, so I said goodbye and went
This afternoon, we were told that Andy
could go home. This morning his blood was checked, and
the thromocite levels had gone up to 56. Reason enough to
send him home as he is responding well to the prednison.
Andy starts walking
Today, Andy walked from one side
of the living room all the way to the kitchen all by himself without
holding onto any furniture. It looks like he can walk now. But it
still requires a lot of concentration. If he hurries too much or if
he get excited, he has to hold onto something or he will drop on
the floor. It looks like he still does not mind to move around
while sitting on his bottom on the floor, which has been his
primary way of moving around for the past year.
We think this achievement might also be the result of the
Omega-3 fatty acids that we have been giving him since
exactly two months ago. At the
moment he have stopped temporarily because it can have some slight
effect on thrombocites levels.
Just before I wanted to put my bike in the shed behind our
house, I saw a meteorite. This meteorite very likely belongs
to the Geminids. The last time I saw a meteorite
was on August 12, 2000.
Early in the morning there already had been some
very thin snow. When we returning from the city
by bus, we saw real snow flakes coming from the
sky. But it was too warm for the snow to stay on
You know you have a child with special needs when....
I received this on our lovely KSN_L email list. I could add the
- You compare ER's instead of grocery stores.
- You compare your child's oxygen saturations.
- You view toys as "therapy."
- You don't take a new day for granted.
- You teach your child how to pull things out of the cupboard, off
the bookcases, and that feeding the dog from the table is fun.
- The clothes your infant wore last fall still fit her this fall.
- Everything is an educational opportunity instead of just having
plain old fun.
- You cheer instead of scold when they blow bubbles in their juice
while sitting at the dinner table (that's speech therapy),
smear ketchup all over their high chair (that's OT), or throw
their toys (that's PT).
- You also don't mind if your child goes through the house tooting
a tin whistle.
- You fired at least 3 pediatricians and can teach your family doctor a thing
- You can name at least 3 genes on chromosome 21.
- You really know you're toast if you can spell the full names correctly.
- You have been told you are "in denial" by at least 3 medical or
therapy professionals. This makes you laugh!
- You have that incredible sinking feeling that you've forgotten
something on those few days that you don't have some sort of
- You get irritated when friends with healthy kids complain about one
sleepless night when their child is ill!
- Your vocabulary consists of all the letters: OT, PT, SP, ASD, VSD, IFSP,
- You keep your appointment at the specialist even though a tropical
storm is raging because you just want to get this one over with...you
waited 8 months to get it...and besides, no one else will be there!
- Fighting and wrestling with siblings is PT.
- Speech therapy occurs in the tub with a sibling.
- When potty training is complete, you take out a full-page public
notice in the Washington Post.
- You don't believe your eyes when your child suddenly starts to walk
around by herself.
- You have a new belief...that angels live with us on earth.
Another one by Kim McCoombes from Austria:
- You keep a daily growth chart.
- You calculate monthly statistics for the number of times your
child vommits, and did so for more than one year.
- You phone all you friends when you child sits up for
the first time at age two.
- With a big smile on your face you tell a stranger
that your four year old just started walking last week.
- Her medical file is two inches.
Which made me think of the next one:
- The Doctors/Specialist/Hospitals etc all know you by
your name without refering to your chart :)
- At the childrens hospital ward they don't ask for
your mobile number... they know it by heart.
Kay Hammond: Looking for a husband
Kay Hammond is a 24 year old internet entrepreneur, looking for a husband.
She decide to auction herself on eBay, but she was removed.
Then she tried it on QLX, where she wrote:
Candidates must be male, a British citizen living in the
UK, aged 24-35, and meet basic health requirements.
Why am I auctioning my hand in marriage?
Marriage is the one ambition I have yet to achieve.
So often I have commented to my friends, family and
colleagues that I never have the time to meet any men. I have
been working on my business, www.tamba.co.uk, ever since I was
17. I work a twelve hour day, seven days a week, so I've been
pretty busy over the last 6 years!
I thought that by creating an online auction I would be
able to reach as many men as possible and hopefully prove that
the Internet is not full of cyber-geeks, there are normal
people out there, and I'm looking for one as a husband!
|DOB||2nd April 1977|
|Measurements||34, 28, 34|
|Hobbies||Work! Looking after my dog, Jack, and singing|
|Inspirations||My parents, Richard Branson, Bill Gates, my old school teachers and headteacher|
Really, I find this so silly, that I felt I had to include
(The last bid was 1000000000 Britsh Pounds,
which hardly can be considered a serious bid.
Last night there was a thin layer of snow outside. This morning,
it was raining, and all the snow had disappeared. It rained
the whole day with some strong wind. Not a good day for
biking, but I resisted the temptation to go to my office by car.
Again there are indications that the United States of America
is more interested in protecting its oil resources abroad then
to do justice. Today, both CNN and ABCNEWS announced that the
original translation of the Osama bin Laden videotape misses
the fact that bin Laden identifies nine of the hijackers.
Also left out of the translation, they said, were the names of
three Saudi clerics who publicly backed the attacks, according
to the man speaking with bin Laden on the tape. At least one of
those three Saudi clerics was possibly a government official.
Before the tape was released by the United States government
on December 13, administration officials spoke at length about
the extensive effort to achieve a full and accurate transcript.
It almost looks like they needed time to determine which statement
to leave out that could be embarrassing to the government of
Saudi Arabia, a very important U.S. ally.
The USA government also does have good reasons to do away
with the Afghan Taliban government, because they have been
frustrating an agreement to build an oil pipe-line through
Afghanistan to transport oil from the states North of the
country to the ocean. It is likely that in the coming years
the USA will be able to make some profitable deal with the
new government of Afghanistan and the other countries for
the establishment of the oil pipe-line.
This morning there was some snow on
the car. When we
drove into the city it started to snow stronger, and
within a short time the roads were covered with snow.
Because of this the roads became a little slippery.
But it was still far too warm, and less than an hour
later almost all the snow was gone.
In the South of Germany a lot of people had to stay
the night in their car on the highway because a
combination of snow and wind had caused snow dunes
blocking the highways at several places. For some
reason it seems we never get any of this kind of
snow in the Netherlands.
Today, we also got news from our family in
Urumqi that for more
than ten days the temperature did not get higher
than 28 degrees Celsius below zero.
First real snow
There was some real snow this morning when I looked
out of the window. In the afternoon the rain washed
most of the snow away.
At nine o'clock the evening service started. I arrived
around twenty before nine, only to discover that the building
was almost full. My foremost reason to go, was to perform my
duty as a translator. For many years, I translate the
services from Dutch into English. By now it almost has
become a second nature to translate from Dutch to English,
just like walking and talking to most of us. I some times
find myself dreaming away while I am translating. There was
indeed someone needing translation, so I did my job.
The whole service was done by the young people of the
church. They lead the service, played the music, lead
the singing, performed the drama, and controlled the
sound, lightning and the audiovisual presentation.
They made a great show of it. I heard one girl, ask
someone else: "Does it go like this every Sunday?"
The answer is no, but it is always a feast. But beside
it being a great show, it also had a confronting message.
The theme of the service was Jesus, a refugee, and
the collection was for an aid organisation. The preaching
also was sharp and challeging, showing, how
Jesus Christ, came to earth,
lived His life, and was crucified.
During a solo of a girl singing a song (which she
wrote by herself), they showed some images about
refugee children. There was one image of a little boy
looking very sad with tears in his eyes. This immediately
made me think of Andy crying
in the hospital
earlier this month. Again, I was overwelmed by the
love that I have for Andy. I never dreamed I could love
someone so much as I love him. Immediately, I also realized
that this love that I felt for him, was just a glimpse of
the love that God has for us. This is truely one of the
greatest blessings of having children: to understand more
of the love of God. This realization gave me a feeling
of getting in touch with reality again. It seems that
through everything that happend in the last years, I have
forgotten what life is all about. This made this service
into a very special night.
We spend the day with my mother. The
highlight of the day was not the great Christmas dinner that my
mother prepared but that we together walked to the graveyard were the
ashes of my father have been buried. In
the past, I could never understand why people would like to want
to visit the grave of their beloved ones over and over again.
Now it already seems to have become a tradition. Walking over
to the grave has become like a ritual of remembrence.
Not that we feel very sad about it (my mother is smiling
on one of the pictures that I took), but it is like we
as a family are coming together, acknowledging that although
my father died last year, in our hearts he is still a member
of our family.
Some snow again
Yesterday eveing, it started snowing again. On the eight
o'clock news we heard that the snow had caused quite a
lot of troubled during the day in the rest of the country.
It seems that it is snowing everywhere, except around here.
During the day the snow vanished again when it started
to rain, just like a few days ago.
It seems this scenario is going to repeat itself around the
It is a long time ago, I went to see a
movie. (The last
movie I saw was Shadowlands, if I am not mistaken, which
the summer of 1994.) This afternoon, I went to see
The Lord of
the Rings: The Fellowship of the Ring. (Actually,
the two movies are related: Shadowlands was about
C.S. Lewis, a personal friend of J.R.R. Tolkien
the author of The Lord of the Rings.) I did not get
the impression that most of the audience had read the book.
As far as my memory served, it looked like a quite accurate
filming of the book. But, I might start to read the book
again (for the third time), just to verify it. I must admit
that I did find it a rather violent filming of the book. Was
it really such a violent book, I asked myself several times.
The movie also ended quite strange for those who did not
know the book, and did not realize that there are two more
movies to follow.
Another minor detail: I was treated with the trailer of
Star Wars: Episode II.
I was not very impressed, also because it revealed too much.
(buying the video,
seeing part two and
Thick layer of snow
When we woke up there was a thick layer of snow,
and although temperatures rose above zero, most of
the snow stayed during the day. On some places on
the car it was more than 10 cm (4 inches) thick.
In the afternoon, Annabel
made three little snowman in
the back garden.
I took a picture from some
snow on a plant in the front garden.
November 2001 |
January 2002 |