Hello!

This entire page is about my son, his disability
and what it's like to have and live with a disabled child.

My little man was born almost 9 years ago, In April 1996.
He was an eagerly awaited son and baby brother.
We named him Robin. Yes that is a boy's name in Sweden...

According to the midwife(*) he was a few days early, but I had this distinct
feeling that they had counted wrong, and I am sure that he instead was overdue!
(
*
)in Sweden a doctor is not present at labour unless there is need for special skills.

Anyway, he behaved just like any other baby does when they are...well...babies.
He fed, slept, cried, pooped and grew. Everything was just dandy.

Until he started walking. That's when we noticed he was always walking on his toes.
So we contacted our pediatric nurse but she told us not to worry
"because almost every child does that once in a while".
Ok, we thought, and tried to remember if his older sister had done it too. Well that was three years earlier so we had forgotten all about any toewalking with her.

The days went by and Robin kept walking on his toes. Strange, we said, and called
the nurse once again. She said to bring the boy in so the doctor could take a look at him.

The doctor had a look and agreed with us that the kid ought to walk on his whole feet
not make like a ballerina all the time. So he refferred us to a neurology specialist at the hospital.

Unfortunately it took a very long time for us to get an appointment with the neurologist,
even though we called the hospital and asked the why it took so long.
In September 1998 we finally got an appointment!
By this time Robin was walking without support, but still a lot on his toes.
Mostly on his right foot but sometimes on both.

The doctors (threre were two of them) looked at Robins legs.
And they pulled, stretched and bent them so the poor little boy was all tears afterwards!
He didn't understand why they did that!

After a loooong while they told us that "this is probably a motoric disorder".
WOW! No kidding???But you know something?
THAT we already had figured out by ourselves, so I told them we were not there for that,
we were there to get an exact diagnosis so that we could get the help and treatment he needed.

We were told that the only thing that could be done at that stage
was to try and keep the muscles and limbs going so they didn't get stiff

So then we started going to a fysiotherapist at the regional habilitation center.

18 months later, after MANY turns and visits at the habilitation we got an appointment for MR.
Robins memory from that is close to gone, because he was sedated during the scanning
to prevent him from moving. That is very common with small children.
They even gave his teddy anaestesia before they gave it to him!

A few weeks later we got a call from the habilitation centre.
They wanted to meet with us to discuss the results of the MR.

But i can tell you this: there are a lot of things i would rather listen to than to hear a doctor
tell us what she did that day. She said that Robin has
periventricular leukomalaci

Simply put it means he has a "spot" in each half of the brain that hasn't developed as it should have.

The final diagnosis for Robin is
Spastic diplegia with rightsided overweight
Which means he has a kind of Cerebral Palsy!

A damage to his brain that will be there for the rest of his life.
Which can not get worse but can be kept under control through habilitaion and training.

Since that day we have been to uncountable visits at the habilitation center, used up lots of
orthoses and we have cried, yelled and complained.
But Robin still walks on his toes more or less. And he will keep doing it for the rest of his life.
Unless he gets a surgery where they "extend" the hamstrings. Which could fail...

In November 2003 Robin had a BOTOX-treatment.
Basically it means the doctor injects BOTOX into the muscles that are to tense and then he is
supposed to have intensive training of those muscles for the following six weeks.
The  treatment didn't help a bit.

September 2004

We have a  new fysiotherapist. He works in a different wau that the old one.
He uses Robins own body as a tool in his training and exercising.
If we don't see any result by next summer he will sign Robin up for surgery.

March 2005

On Tuesday, March 29, we leave for the hospital. We finally have a date for a surgery!!
We only know he will have to have a cast on each leg and he also has to be
in a wheelchair for the first weeks.

13th August 2005

It is almost 5 months now since the surgery. Robin had to wear casts on both legs for 6 weeks
after the surgery and he had to use a wheelchair for transportation.
He was supposed to walk with crutches at home and in school,
but he didn't want to use them so he leaned on furniture and walls instead.
It went just as well!

After the casts were removed there was an intense period of training.
for 6 weeks we had to go to the habitiliation centre 4 days/week
for excercising so the hamstrings wouldn't tighten up again.

Robin hasummervacation now. In a little over a week school starts again and he is really happy
now that he can be in gymclass and other stuff he couldn't do before.
His walking is great, it just looks as if he has a slight limp if you even notice it!

13th July 2006

Eleven months since the last commentary here. Oh boy, I really need to sharpen up!

It is now 14 months since the surgery and everything is going as expected.
Robin walks on the whole foot. On both feet. He runs, swims, plays soccer
and does a whole lot of stuff he could only dream of doing 2 years ago.

We still practice every morning and every evening to prevent the hamstrings to get stiff
and shorten up again, and he still needs to wear his slides at night,
but it's a small sacrifice to be like everyone else.

Balance isn't quite as it should yet, but getting better each day.
He still rides his special bike, but I have promised to get him a real one next year!

May 2009

I have no need for updating this page any longer, since Robin is now as any other
boy out there. He walks, runs and does everything all his friends does.
The only thing he doesn't do is to ride a bike, but I'm sure he'll manage that too one day.
The only thing that separates him from other kids
is that he drags his right foot a little when he is tired or exhausted.

Thank you for reading my story!

 

Facts about Cerebral Palsy - Start