Who is Vegard

Vegard is a 7 year old boy from Norway.

From infancy Vegard has suffered from Infantile Spasms/West Syndrome. The fight for finding out why has been long and hard - but finally, after a five year struggle we got the diagnosis.

Vegard has a rare genetic disorder in Exon 8 in the CDKL5 gene.
So far Vegard is the only boy registered in the world with a disorder in Exon 8.

There are still quite few boys registered with this disorder in general, but as the knowledge of the disorder spreads, the number of boys are steadily increasing.

One can learn more of the CDKL5 disorder on this web page: http://www.cdkl5.com/

There is also a support group: http://uk.groups.yahoo.com/group/CDKL5/


This is Vegard's story.

Fixed hip

It did take some time, but finally, the day came - Vegard's right hip was put back where it belongs, after 1 1/2 year of being luxated.

Friday 7th of January 2011, we were admitted to the National Hospital in Oslo, and the following Monday - the 10th, the surgery was done. It all went well, and after five days, we were transfered to our local hospital in Drammen, where we stayed for one week before going home.

Now Vegard is home - with both legs in a cast - spred wide. It's a bit of a hassle, but he is doing well, and is very patient. We get daily visits from his day care centre, and his physiotherapist comes twice a week to work with him.

Vegard will be like this till the first of March, then the cask hopefully will come off, and life goes back to normal again.

Waking up in the intensive care unit.

Now in the same room as mum, and feeling a bit better.

Finally at home again - and Pus - Best Buddy and High Protector is happy.

Vegard is holding his head up high

The other day, I emptied our camera, and I found a little video I had shot of Vegard, in February 2010. Just see how strong he can be, when he is feeling good.

Please disregard the over excited mum speaking Norwegian. ;)

Brotherly Love

We wished so dearly
to have two children
close in age.
We dreamt of the joy
they would have in each other.

We wished for two boys
and our wish came true.
First there was Big brother -
two years later – Little brother.

Life doesn’t always go as one plan.

Little brother will never run -
romping around with his big brother
as we had seen in our dreams.

Still – on good days -
when life smiles at Little brother,
then he can sit in his chair.

Big brother comes -
”Wanna play?”

He puts toys in the hands
of his little brother -
toys that are just as easily retracted.

A balloon – dancing on a string.
Big brother pushes it -
Little brother is watching.

Big brother is kissing.
Pats his Little brother on the cheek -
patting him – just a little bit too hard,
just like big brothers do.

On good days it looks as if
Little brother is right here amongst us -
in the world outside his own head.

Then it looks as if he’s enjoying himself!

Big brother loves his little brother
above everything in this world.
I’m certain that Little brother
loves his big brother the same way.

Who’s saying
that they can’t have joy in each other -
just because Little brother is like he is
and not exactly as we ordered him?

(From my blog Inagh og gutta 2007)

Early Morning

It’s a quarter to six in the morning – the alarm clock sets off - my husband is off to work.
6 am – hubby is out of the door – lays home life behind.
I turn in bed – wish for some more sleep…

6.05… “Mummy, I’m awake!”
Big brother – the 3 year old – is very much awake -
refuses to accept that it is still sleeping time.
Comes creeping into the Mummybed -
a lovely warm boy’s body – a lovely boy’s hug.
“Mummy – wakie, wakie! Mummy – get up now!”

Mummy gets up.
Mummy goes to the bathroom with big brother -
has just enough time to pull off the pyjama...

6.30 am – Little brother is crying from the room next door.
and crying…
and crying…

Little brother – soon to be 14 montsh old can cry for hours –
nothing can comfort him – he cries and cries.
He’ll just have to lay there in bed, crying till I’m done getting big brother clad.
“Mymmy… Little brother’s crying!”
“Yes… Little brother’s crying…”

Big brother is done – Little brother is picked up for his morning routine.
while crying…

Little brother is ready – all changed and in clothes.
still crying…

Big brother has his breakfast.
Little brother gets a spoonful of porridge -
when he manages to draw breath between the cries.
He needs to get his medicines down –
a lot of medicine – which needs to be taken as punctual as possible.
Each morning – every day.

Dressing Little brother for going out – while he cries.
Putting Little brother in his pram – while he cries.
Never mind the neighbors – they’ll just have to take the crying...

Getting Big brother dressed -
whom after days and weeks of cries from Little brother
is quite used to turning a deaf ear.
He is happily playing between the different pieces of clothes
that is put on to protect him from the winter cold.

Walking ut to the garage -
to a warm car, thanks to the fan, which the hubby started
so generously as he left earlier this morning.
Reversing the car out of the garage.
Putting a crying Little brother in his seat.
Big brother is already seated -
with this mornings kindergarten breakfast box neatly placed
in his two little hands – carefully minding the box.

First stop – Big brother’s kindergarten -
Little brother calmed down during the short ride.
A nice and quick goodbye -
breakfast box, a cup of milk – and a bye-bye cuddle for Mummy.
Next stop – Little brother’s kindergarten.
It’s dressing up day today – Carnival – Little brother Bunny.

Little brother is having his first epilptic seizure for the day -
wonder why it didn’t come earlier,
regarding how he has cried for the last hour.
Little brother bites himself – bleeding.
Bunny gets a bloody sleeve – a little bit of red in the white bunny fur…

Mummy dries up the blood – soothes – dries the tears.
Little brother is placed safely in the arms of the Kindergarten lady.
Safe, warm arms – Little brother is safe – Mummy is safe.

Two boys in thir kindergartens.

Mammy home – to coffee, newspaper and breakfast.
Tired… aching body… heavy head…

How on earth will it be when I start working again?

Inagh 2006 - from the blog Inagh og gutta

When you walk through the storm

Little brother is about to do his exercises.
Little brother is soon to be 14 months -
and he is to do his exercises -
exercise moving his legs -
exercise moving his arms -
exercise holding his head up high…

Little brother is soon to be 14 monts,
but Little brother can not hold his head up high.

Red mat -white chlothes.
A whitle little bundle of Little brother
who does not control his body -
who does not control his will…

Red mat - white little body.

Starting easily – soft exercises -
nice and fun exercises.
“Row, row, row your boat…”

Mummy is singing.
Little brother can’t hear me.
Still – Mummy’s singing.
And Mummy rows legs.
”Merrily, merrily, merrily...”
Mummy sings – and rocks.
Back and forth again – back and forth again.

Little brother can’t hear that mummy sings,
but Little brother enjoys exercising his legs.
A soft, little smile – a swift smile.
Little brother doesn’t smile too often, but it happens.

Exercising the arms.
“Little brother is soooo big!"
Arms are lifted above the head.
“Little brother is sooo big!"

Little brother does not enoy exercising his arms.
He makes faces - wrinkles his nose.

“Liverpool -Yea! ManU - Buuu!”
Arms up, and arms down.
“Liverpool - Yea! ManU - Buuu!”

Hey – that was more fun.
a little more happy wrinkles above the nose.
a little bit more sparkling in the eyes.

Now – let’s feel.
Little brother’s body is curled as in a knot.
Hands get to feel feet and toes.

Toes being put in the mouth.
Fingers being put in the mouth.
“These are your fingers, Little brother.
Taste your fingers!”
Little brother doesn’t bother about tasting...

Some massage.
Face, arms, tights, calves.
”Hm... not too bad,” Little brother thinks…

At least this is what Mummy thinks that Little brother is thinking…

The soft, nice and fun exercises are over.
Now the real works start.
The aim – what we one day hope to achieve -
what we one day in the future hope to take for granted…

When you walk through the storm
Hold your head up hig!

Little brother is laying on his back -
Mummy lifts one of his arms above his head.
she takes a good grip at Little brother’s hip -
and one, and two, and three… “Little brother is turing around -
he has to bring his head along as we go.
Phew – this is heavy stuff.
Still – there he is on his belly.

Nose rubbing the red mat.
Drooling. Little brother’s huffing and puffing.
Struggeling, moaning.
After a while he manages to turn his head to one side…
AIR!
Some more huffing and puffing.

Little brother does not enjoy lying on his belly.

Consentrating – real hard...
And then – THERE – Little brother is raising his head!
For 4-5 seconds he holds his head up high – in triumph -
before it bumps back down at the red mat once again.

Little brother is tired…
Mummy is proud…

When you walk through the storm –
Hold your head up high…



Inagh 2006

From the blog Inagh og gutta

Standing at attention

Vegard has no will povered movements. He can not hold his head up for a long time, he can hardly lift his head from the floor when lying on his belly. Still, a young man has to get up and about, and it is good for the bones to be standing upright. Also, Vegard gets a very different view when standing, rather than sitting or lying down. So, in order to get up and standing, Vegard has a "standing shell" fitted.

It vary a lot wether he feels up to standing or not. At the best, he can stand for up to one hour, some days he will start crying after five minutes.


April 2006 - Vegard is being plastered for fitting a "standing shell" -
impressing the orthopedic technician by sleeping through the whole thing


April 2006 - Vegard in his "standing shell" for the very first time


May 2008 - getting ready for being plastered for a new shell


Getting one of the legs done


August 2008 - standing in kindergarten