Matthias was born 2½ hours before his due date,
which was 21 Feb., after a normal, uncomplicated
pregnancy.
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Matthias Riding his Bike
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The delivery took 25 minutes, which stressed
Matthias very much so that his blood sugar went down, and
he was in the neo-natal unit for a day and a half, where
he was fed sugar water. His apgar scores were 9 and 10.
There were no complications and we left the hospital
after 3 days. Matthias is our first and only child,
and there was nothing unusual about him. He ate well and
regularly, slept well, played with his toys, was never
sick, started eating solid foods at 4 months. The only
thing different about him, which became apparent at
around the age of 4-5 months of age, was his poor head
control, and a squint. We talked to several doctors, who
said that the poor head control was not unusual, some
children take a longer time, and the squint we did not
think much of since his mother and his maternal
grandmother have a squint, too, when tired. At 5½ months
of age, we went to a pediatrician because of his poor
head control, and she could see nothing wrong with him,
but referred us to the hospital for physiotherapy.
Coincidentally, a doctor there had just read an article
about CDGS, and thought Matthias had some of the same
symptoms - introvert nipples, fat pads, the squint. They
did not tell us about this, because they wanted to be
sure before giving us such a drastic diagnosis, so he
underwent an MR-scan, an EEG, an EKG, and some blood
tests, but there was not anything unusual about them.
They just told us they were looking for a metabolic
disorder. Only when they got the result of the last blood
test 7 days later, it showed that he has CDGS.
Up until that moment we had had a perfectly normal,
healthy child, now we had…..well, you all know the
diagnosis and the prognosis. It was utterly shocking, and
our world was of course shattered, all the more so
because we didn't have a clue. In retrospect, however, it
was good to have such an early diagnosis, because we were
able to do something from the very beginning.
After having our entire world crumble and get through
the first weeks in tears, we decided to show the doctors
that he could do more than that. We knew Matthias well
enough to know that he was not as mentally retarded as
they tried to make him out to be, so we tried to figure
out where to go from there.
First we went to see a great chiropractor, who from
the X-rays could see that - due to the quick delivery -
Matthias had displaced something in his neck, which made
it impossible for him to lift him head from the tummy
position. After 4 visits to the chiropractor, Matthias
lifted his head the first time. We continue to see the
chiropractor once a month to make sure that everything is
kept in place, the neck and the spine and all the nerves
and veins that are within them. Matthias did not have any
blood flow on one side of his spine, which means that he
did not get any "energy" to certain muscles.
Furthermore, the chiropractor tries to make sure that he
does not develop scoliosis. Matthias' eyesight also
improved with his visits to the chiropractor - whether it
is coincidental, we will of course never know, but at the
age of 10 months he could only see about 6 meters, today
- and for the past 2½ years - he has been able to see
everything. This we know for a fact, because he tells us.
We started stimulating him in every way we could think
of….. speech, sounds, colors, books, shapes,
visions, touch, and zonetherapy, physical therapy,
swimming, horse-back riding, play class, rhythmics class,
speech therapy, and he benefited enormously.
I wanted to stay at home and do all these things with
him, because I felt I could do it better because I love
him, but when he was around the age of 2½, he was no
longer susceptible to learning anything from us. It came
to a point where he was very ready to learn, but not from
us, because we were always too fast to interpret what he
wanted, so he did not have to make an effort himself. He
started in the world's best kindergarten for physically
disabled children, where he has now been for 2 years.
During those 2 years, and Particularly during the past
6 months, he has developed immensely in every field. His
fine motor control is really good, he can eat his own
food, he has a very good hand-eye coordination, he can
reach out and grab what he wants now without knocking
everything else over, he can pick up tiny things and
doesn't have any real difficulties in that area.
His gross motor control keeps getting better as his
balance keeps improving. He learned to sit up at the age
of 3 years and 8 months without falling. He can also get
from the sitting position to lying position on his own.
He has been able to pull himself across the floor for a
long time, so that he can get around, and he is beginning
to get up on all fours and crawl a few steps. It seems
that every time Matthias learns something new, it
encourages him to learn some more. He has always been
really curious and wanting to find out everything, see
everything, and try everything, which is of course
essential for the motivation.
His language skills are really rocketing these months.
He probably has an active vocabulary of a few hundred
words, most of which is not comprehensible to outsiders,
and is now using 2 and sometimes even 3 words together.
He has realized the potential of speaking, but at the
same time he is a bit of a lazy bum, so we have to push
him to say the words, and mostly he will because it makes
him proud, but if he does not want to, he certainly
won't, because he is very strong-willed!! That is a
wonderful trait because it works both ways….when he
wants something and when he doesn't want something. With
Matthias you are never in doubt.
Matthias is a very loving, trusting and happy child -
he loves to be around people, and he loves to have a lot
of things happen around him. He is very, very energetic,
and is not tired until the minute he puts his head on the
pillow.
Matthias has never suffered from any illnesses, he is
hardly ever sick, just the occasional flu, and we are
very thankful for that. Matthias has suffered a lot from
fever convulsions, but there has never been anything
serious behind the fever, and the EEG results have never
shown anything abnormal. He eats, drinks and sleeps well,
and is a big boy of 16,5 kilos.
As you all know it certainly is a lot of hard work,
but we feel lucky that Matthias has been spared so much
in his childhood years, and as you all know the award is
great, and we certainly feel we have the most wonderful
boy in the world, and he means the world to us.
That was in short our story.
eff: 1998