Tuesday, April 27, 2010

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)


Monday, April 26, 2010

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

Sunday, April 25, 2010

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

Hypersensitivity of touch and periods of crying

Ever since Vegard was born, he has had periods of hypersensitivity when it comes to being touched. He would panic if he was naked, and we always had to keep parts of his body covered by a towel during changing of nappies and body wash.

This however has been much better after the fundoplication. Now Vegard loves being cuddeled, kissed and sitting in someone's arms.

We also experience periods where Vegard will cry hysterically. The only thing that used to help when Vegard was a small baby, was to tuck him in his douvet, put him in a cold and dark room and leave him alone. We had many an evening where we took turns - one of us minding the crying baby in a dark room, the other minding the two year old big brother.

Since Vegard now respond much better to touch, he can be comforted by holding him in our arms and cuddle him, speak low and friendly or sing to him. Still there are times when the only thing that will calm him down is to be put in bed.

These periods can last for days and weeks, and he will cry everything from a quarter of an hour up to hours each day. We have never figured out why he is like this.

Hip Luxation

In the summer of 2009, Vegard suffered from a hip luxation in his right hip. We are currently waiting for the hip to be put back in place at Rikshospitalet. This will most likely happen during autumn 2010.

After having the hip surgery, Vegard will be in a cast from his hip down to his ankles for 6-8 weeks. This will cause some challenges when it comes to logistics around our boy. How will we move him aroung, when he won't fit in his car seat, nor in his pram or wheel chair? Will we be able to keep him at home, or does he have to stay in hospital or in the care home during this period?

We do luckilly have a fine group of helpers round us, and preliminary plans are made already. As soon as we get the date for the surgery, the group will come together to plan everything down to the very least of details.

So - this too shall pass.

Sight and Hearing

Vegard’s eye sight is normal, but he was counted as functionally blind for a long period, as he didn’t use his sight actively. He still won’t follow persons or toys with his eyes, but he gives eye contact over a longer time now, and he shows with smiles and gests that he recognizes people and places.

Vegard has a hearing impairment. He had hearing aid fitted, but together with the audio specialist at the hospital, we decided that it was just a bother for Vegard to use the aid, as he has enough hearing to cope in everyday life.
Vegard has also been bothered with fluid in his middle ears, so on two occasions had tubes inserted to drain the fluid from his ears.

Vegard does not turn his head as to follow sounds, but he shows that he regocnizes people he knows well when he hears their voice. He will also give a big smile when someone sings or play music to him.


Easter 2010 - Loving friends are visiting - giving Vegard a concert


Oh - please sing and play some more for me!

Streptococcal infections

Vegard had a lot of streptococcal infections. Several times during a year he would get an infection, following fever and a general bad condition. There were a lot of antibiotic cures for our boy. Following the streptococcal Vegard also had an increase in the epileptic activity, giving him stronger and more frequent seizures. On two or three occasions Vegard suffered from status epilepticus because of the streptococcal, and he had to stay in the intensive care unit for a few days.

Because of all this trouble, Vegard was admitted to Rikshospitalet in June 2009 to have his tonsils removed. This was meant to be an easy in-and-out procedure, but we ended up in hospital for a week, since during the operation Vegard had blood in his lungs and ended up with a pneumonia. It was a very long and hot week, and Vegard was terribly ill. But anyway – the tonsils are gone now, and the winter of 2009/2010 has been a streptococcal free winter!


Waking up from the tonsillektomi


Vegard as a wet spot on the sheets after a very hot night

Reflux

From Vegard was newborn, he had a severe reflux. He was in pain from this, he had difficulties breathing and had spasms because of this. He also had problems with feeding because of the reflux. It was decided that he needed an operation to fix this – a Nissen fundoplication.

“Nissen fundoplication is a procedure for strengthening the valve muscle between the stomach and the esophagus preventing stomach acids from being forced back up into the esophagus.

Normally, a circular band of muscle called the lower esophageal sphincter acts like a one-way valve and only opens when swallowing. The lower esophageal sphincter should otherwise remain closed and prevent the back up of any stomach secretions into the esophagus. If the lower esophageal sphincter becomes weakened or abnormally relaxes, the stomach secretions can reflux up and cause the associated symptoms. These changes in the lower esophageal sphincter can also be exacerbated by the presence of a hiatal hernia. This occurs when a portion of the stomach protrudes through the diaphragm and goes up into the chest.

To prevent stomach acids from being forced back into the esophagus, The surgeon must strengthen the "valve" between the stomach and the esophagus. This is achieved by folding a part of the upper portion of the stomach, or fundus, around the bottom of the esophagus strengthening the Stomach Valve.” (Direct Healthcare International.)

There are two ways in which this can be done – either by laparotomic surgery, when they operate by an incision in the abdomen, or laparoscopic – minimally invasive surgery. (MIS)
On the 2nd of January 2008, Vegard was operated on by laparoscopic surgery. The operation was successful, and Vegard recovered exceptionally fast. Two days after the operation, we celebrated his 3rd birthday at Rikshospitalet. It was a beaming boy who smiled at us from the bedside this day.



Waking up at the intensive care unit 2nd of Jan 08


The nurses have decorated Vegard’s bed for his birthday.


The nurses also made a birthday crown for Vegard, and gave him a toy lion.

For a year’s time, Vegard was well and free of reflux, but during spring 2009, it was obvious that the reflux had returned. Examinations showed that there was a hernia in the fold around the esophagus. In November 2009, we therefore had to go back to Rikshospitalet for another Nissen fundoplication. This time it was done by the full incision in the abdomen. This was a much tougher procedure than the MIS, and Vegard needed much longer time to be himself after this operation. Now we really do hope that we have seen the last of the reflux!

Eating and drinking difficulties

For a long period in the autumn of 2005, Vegard cried for hours every day. The doctors fought amongst themselves about the reason for this. The only thing they seemed to agree on, was to spit at my idea of this being tummy ache. “A 7 month old baby is way to old to have colic pains.”

Vegard cried, and he cried. The only thing that would calm him down was to wrap him up in a duvet, put him to bed in a dark room, and leave him alone. Vegard cried for months, until he one day caught the tummy flu. That day he threw up all his food. This day he didn’t cry. The next day he didn’t manage to eat, and still he didn’t cry.

We started thinking about what food he had so far. Vegard had just started eating dinner, after months on milk formula and porridge. He godt dinner from glasses bought in the store, and when we started reading what these contained, we saw that most of them had peas. From that day we started making Vegard's food from scratch, making sure there were no ingredients that could give Vegard air in his belly. He stopped crying all together.

When Vegard came off the Prednisolon, he lost the ability to drink from a bottle – he could no longer suck, so he had to be fed through a tube in his nose. The reflux bothered him a lot, and Vegard had much bother with slime in his lunges. We often had to turn him upside down several times during the day and literally thump the slime out of him. Vegard was also challenged with several pneumonias. We asked Vegard’s neurologist what could be the cause of this problem, but the only answer he could give us, was “they quite simply are like this, these poor children.”

Until 2007, Vegard belonged to the children’s ward at SSE. In March 2007, he was transferred to ward C – the ward for children with multiple physical challenges and severe learing difficulties. With this, we also met Vegard’s new doctor, dr Anna, who would have the main responsibility for his treatment from now on. During our first meeting with dr Anna, we had to do as we often had to do – turn Vegard upside down and thump the slime out of his lungs.
Dr Anna then asked the ultimate question: “why on earth do you have to do like this?”

The very day after, Vegard was sent to Rikshospitalet in Oslo. There they X-rayed the whole process of eating and drinking. We learned then that Vegard did not only get food and water down into his belly – it also got to his lungs… There and then it was decided that from now on there was to be no more eating or drinking by mouth for Vegard. He was to have a button in his belly, by wich he now would be fed.

It was a long and trying wait till Vegard was strong enough to have the surgery, and till then, he had to be fully fed with a nose tube. This was quite a bit of hassle, and the drug he took for the reflux, Losec, repeatedly clogged the tube so it had to be changed. Vegard was also very clever at getting a finger under the tube and pull it out.

2007 - Vegard with feeding tube



April 2007 – Vegard Two-Snake, having both a feeding tube and a ph tube.

It took some time, and Rikshospitalet canceled the operation twice until Vegard finally got his peg on the 7th of September 2007. Vegard had the peg until January 2008, when he got the button – a Mini Button, which as worked like a dream from day 1. It was a huge relief to finally getting rid of nose tubes and trouble.


7. september 2007 – the nose tube is gone!
Vegard is awake after the operation, and has Rasmus the Rat to comfort him in bed.

The peg

And finally - the Mini Button

The lung problems have completely disappeared after the discovery of Vegard getting food down his lungs. No more thumping, no more pneumonias. From needing several doses of asthma medicine each day, Vegard now only needs a little help during the coldest months of winter if he gets a nasty cold. After having the peg and the button, Vegard started putting on weight, and soon he was a much stronger and happier boy.We can clearly say we got a new child!

CDKL5 Disorder

We had more or less gotten used to the idea of never finding out what has caused Vegard to be as he is. All tests that had been done so far had come out clean. Then we were put in touch with a geneticist and she started digging in Vegard’s genes. One day she called us, all exited, and told us they had found a disorder in one of Vegard’s genes. She asked us parents if we could have blood samples taken, so that it could be ruled out if one of us had the same disorder. Well – the answer came a few weeks later, my husband had the same disorder in his genes. Since he is a perfectly healthy man, this disorder was dismissed as innocent in Vegard’s case.

We more or less forgot about the whole thing, until one evening in November 2009 my phone rang. Once again it was the geneticist, and this time she was very exited. She had had some results back from the University in Cardiff, and they had found a new genetic disorder in Vegard. Now it just remained for us parents to be tested once again.

Then, in February 2010 I once again had a phone call from the geneticist. She was all over the moon – none of us parents had the same disorder. She told us she is quite sure she finally had cracked the code. Vegard has a disorder in the CDKL5 gene – in exon 8.
Reading about this disorder, it all fits – the Infantile Spasms, the West Syndrome, the severe learning difficulties and his physically challenges.

There is no cure for a CDKL5 disorder. Practically it means nothing for us having a diagnosis. Still – it means everything. Now we know! Now we know for certain that I didn’t do anything wrong during my pregnancy – nothing I ate or didn’t eat could have changed what was in wait for us. Now we know nothing wrong happened during birth. Now we know nothing wrong happened during Vegard’s first weeks in this life. And better still, we also know that if his big brother Erik one day wishes to become a dad, he does not have to worry about bringing Vegard’s condition on to his future children.

So, as I said – having a diagnosis means practically nothing – and practically everything.

Ketogenic Diet

In May 2008, Vegard started on ketogenic diet. Ketogenic diet was discovered as a treatment for epilepsy in the 1920s. The last 15 years, the diet has been in increasingly more use. The diet is made of meals that all consists of large amounts of fat (about 90 %) and very little protein and sugar. At least 50 % of the children who starts the ketogenic treatment experience a obvious reduction of epileptic seizures, and 10 % are having no seizures at all. As opposed to treatment with drugs for epilepsy, where you often can see side effects as negative influence on attention and behavior, this is rarely seen with the diet. On contrary, on often see a positive effect on concentration, behavior and quality of life. (Rikshospitalet)

Vegard’s seizures has changed in character after he started the diet. He still experiences daily seizures, but they are not so long lasting as before, and he doesn’t get so exhausted after a seizure as he used to be. What we have noticed the most is the change in Vegard’s cognitive behavior. He is more alert, he smiles more and he gives longer eye contact. He also makes more sounds than earlier. Vegard shows quite clearly that he knows his mum, dad, Erik, the kindergarten staff and his physiotherapist, not only by sight, but also by voice. He often starts smiling when people approach him and start talking to him. Vegard also shows that he knows the kindergarten house - he smiles when I take him out of the car in the morning, he knows that the fun will start. He also shows very clearly that he likes music and people singing to him, and if he has a good day, he likes that we tickle him.


Swimming in colorful balls is quite fun!


Vegard in kindergarten - doing paint works

SSE - The Special Hospital for Epilepsy

In September 2005 Vegard was admitted for the first time to SSE, which then was the special hospital for Epilepsy, and which now is a part of Rikshospitalet, the main hospital of Norway. From this day on, it was Vegard’s doctor at SSE who controlled all of Vegard’s treatment for epilepsy, and during the later years it has also been the doctor at SSE who have taken care of a number of other problems as well.

They can not perform miracles at SSE, but after all, it is there the expertise on epilepsy in Norway is gathered. We have had a large amount of help, support and understanding from the doctors and staff there.

When Vegard first met them, in September 2005, he was on a medication of Orfiril and Fenemal, which had replaced the disastrous Rivotril. He was a small, undernourished child. The slightest bug sent him right to hospital, he had problems with eating and he cried a lot. He also showed signs of not wanting to be touched. He was still very much bothered with slime in his lunges, and had to have breathing medicines several times a day.

The mediaction has been altered and altered again – in a vain attempt to gain control of Vegard’s seizures. Topimax was added to the combination of Orfiril and Fenemal. They have also tried to give him Frisium, and then Apodorm/Nitrazepam, but nothing seemed to work. In the end Vegard was put on a combination of Keppra and Topimax, which he is still on today.


Vegard and mummy at his first video telemetry - August 2005


Mummy's little Teletubbie - June 2009

Testing - failing - and more testing

It was obviously not supposed to be easy. Sabrilex turned out not to work as we hoped, and Vegard was soon taken off that medication. Instead, the doctors now gave him Orfiril for the epilepsy. In addition to this, he was given shots of Synachten – ACHT. ACHT is a drug that can be very efficient for fighting hypsartytmia, but it completely knocks the children out. For weeks, Vegard was just laying there, not able to move, making no sounds – he was like a doll.

Children on ACHT must be followed closely, as there is a risk of getting too high blood pressure. Because of this, Vegard had his blood pressure taken every second day. After a few weeks on ACHT it was once again time for this control. The nurse who checked the pressure this day wondered a bit…. “Hm… I think I must have done something wrong, I’ll do it again.” Once again she measured Vegard’s blood preasure. “Hm… I think there must be something wrong with the machine. I’ll go and fetch another one.” A new machine was fetched, and Vegard’s blood pressure was taken once more. And then the nurce went to get the doctor. The blood pressure was high – way to high. If Vegard had been a grown man, the pressure would be too high.

And then we had to stop giving Vegard the ACHT shots. It was quite fascinating observing the changes in Vegard as the ACHT left his body. We were told it could take up to a fortnight before we could see if there had been any use in these shots. Vegard had his last shot of ACHT a Thursday morning. The morning after I thought for a moment that I hade eye contact with Vegard, but I thought that I might have imagined it. Still, later that day, as Ørnulf changed Vegard’s nappy, Ørnulf could happily tell me that Vegard had moved his right leg. Somewhat later that day, and the following day, Vegard started moving his arms.

On the Saturday, Ørnulf said it looked like Vegard was trying to smile, and I could confirme the same thing later that day. Even later, Saturday evening, Vegard smiled at a very happy and touched grandmother. “Look – he’s smiling at me!”

And there was progress. EEG showed no hypsarythmia. Vi had a baby that sat on our knees, interacting with us. Vegard moved his arms and legs further more for each day passing. Soon he gave us real eye contact, he started making sounds – and one glorious day he laughed. Vegard gave us a happy, glorious laughter!

It was too good to be true. It didn’t last long – it lasted for five days… The hyparythmia returned. But for five days we did have a little boy who laughed at us – who laughed at the world.


Vegard is lauging - 4 monts old - May 2005


So – the ACHT had to be stopped, but the doctors still wanted to continue cortisone treatment, since it had worked so well for the hypsarythmia. They started him on Prednisolon in addition to the Orfiril. And with the cortisone, there was growth of facial hair, Vegard got to get a big “moon face” – with blown up cheeks, and he also developed eating problems.


Vegard with cortisone cheeks - June 2005


Vegard on his Name's Day - September 2005

While trying out a range of different medicines for epilepsy, there was taken an endless row of test in hope of finding out why Vegard is like he is – what lies behind the infantile spasms? There was a spinal puncture, a MR scan of his brain, a biopsy of his muscles, and countless blood samples taken. Every answer that came back showed no abnormalities, everything looked just fine. Even the MR scan was perfectly fine, which confused the doctors profoundly. Until then, they had been quite sure that Vegard had to have a big brain damage, but no, not even a small scar to explain the heavy epileptic activity.

There was also a frantic period of trying out different medications in different combinations. So far nothing had seemed to work. The Prednisolon got replaced with Rivotril, and this seemed to work quite well. But – one of the side effects of Rivotril is an increase of slime produced in the lungs. This was not a good thing for Vegard, who already had problems with this.

By the end of August 2005, Vegard was once again admitted to hospital. This time his breathing was very bad. He breathed faintly if he was laid on his left side, but if he was laid on his back or put upright, he stopped breathing. The doctors did not yet understand why this happened, and Vegard got more and more ill. In September, Vegard’s main doctor – dr Thomas, sat down with us, and we had the conversation about ventilators and resuscitation, if it came to us having to make such a choice…

We started preparing for the worst, and gave notice to family and friends that it didn’t look too good. Then one evening Vegard’s neurologist came by, I think he more or less stopped to pass time and have a talk. I told him then, that honestly, I thought this all started when Vegard was put on Rivotril. The doctor looked at me for a short moment, then he disappeared very quickly down the corridor. Later that evening, Rivotril had completely gone from Vegard’s medication.

From there on, Vegard slowly got better, and after two weeks he sat on my knee, as well as Vegard could ever be. Dr Thomas used to come to our room just to look at Vegard and rejoice. He openly admitted that he never thought this possible.

From my blog "Inagh og gutta" - Complete Healing

Complete Healing

Before we had children -
when life consisted of my beloved and myself...

Before we had children -
and the children took the room, where once there were just two…

Before we had children –
and we could use our time to whatever we wished…

Then my beloved and I spent
hours and hours in front of the computer
each and every evening...

We role played on the internet – “Everquest.”

I was a little Warrior cat…
A brave little warrior, who fought hard battles…

My beloved was a Cleric –
a bold little dwarf with healing powers…

Every now and then my warrior cat got wounded -
and then the cleric was there with his healing words…

Every now and then my warrior cat was close to death -
then the dwarf was there – with the ultimate spell -
“Complete Healing”…

Little brother…

Little brother is also a warrior…

A brave little warrior, who fights hard battles…
Little brother fights every day, and gets hurt…

But Dad is no bold dwarf -
no cleric with healing words that can fix everything…

Actually – Little Brother has real clerics on his team…
But none of them have Complete Healing…



Inagh 2005

Infantile Spasms/West Syndrome

For a little while, it looked as the Gaviscon was doing the tricks. The fits seemed to calm down, but after a while they started again, now increasing both in strength and duration. From having a seizure now and again during a week, gradually Vegard was having fits every day. From being single seizures, the fits grew harder and harder. In the end we counted up to 100 crouched in one seizure.

The doctors still thought Vegard was just suffering from reflux. He got a special type of milk formula, that should thicken the milk in his tummy. When this did not help, Vegard was put on Losec, a medicine that takes away the sourness of the stomach acid, so that the pain of having the reflux should go away. Still, nothing seemed to help our little boy.

Vegard grew, the seizures came and went, and as he grew older, we started waiting for things like eye contact, smile, babbles, waiving of arms and legs etc. But no… No smiles, no babbles, no trying to reach for toys or grabbing his toes. Sometimes, but not often, Vegard would look us in the eyes. Our boy turned out to be a very passive baby.

I started to express my concern – there had to be something else wrong, in addition to the reflux – babies should not behave like this! Our local nurse told me to relax, babies develop differently, and I should not compare Vegard with his older brother.
Still, I just knew something was wrong with my boy.

Time passed, and Vegard was still quite passive. He grew more and more ill. By the end of the Easter holiday, he was constantly having fits, and after a very heavy night – the night of March 30th – we acted. We called the children’s ward at the hospital on the Wednesday morning and asked to come in with Vegard.

We were met by a pediatrician whom examined Vegard. He listened to us when we told him about how little contact Vegard gave, and admitted Vegard to hospital for further examinations.
On the Thursday morning they took an ultra sound of Vegards brain, and the third EEG in our baby’s short life. We thought it was a bit weird that they should take another EEG as, they had taken two before, when Vegard was three weeks old. These had been just fine, and showed no signs of epilepsy.

The EEG was done… Two hours later, there was a train of doctors and specialists coming to us, asking us to sit down. They told us Vegard had Infantile Spasms, also called Salaam cramps and West’s Syndrome, a rare, but severe form of epilepsy. The EEG showed severe hypsarythmia, a chaotic pattern in the brain activity.

This illness will often result in a delay in the mental development of the children, something we had clearly seen in Vegard. The doctors couldn’t give us any prognoses on how delayed he would be, as he was just 3 months old, but still, they were open on the fact that it was not a good sign that he still was like a newborn baby.

Vegard was put on Sabrilex, a standard medicine for epilepsy on the very Thursday. He started on the lowest dose and should gradually increase the dose till they found what was right for him. We desperately hoped this was the right medicine.
After five days it seemed like we had a new child. The seizures got better, they were still there, but they were not so hard and exhausting for Vegard. When he was awake, he gave eye contact, he even smiled and babbled a little bit. We took this as a good sign. Maybe I was naïve, but I was clutching at the straws I could find.

All this time, the staff at the children’s ward at the hospital in Drammen were incredible. They gave us an enormous amount of care and support. There was room for both laughing and crying. We were seen both as parents and individuals, and they took great care that Ørnulf and I could spend time together by ourselves. They also put a lot of effort in helping us so that we could be as much with Erik as we could, so that he would suffer as little as possible with all that was going on.

On the 4th of April I wrote in an e-mail to family and friends:

Our life has taken a sudden turn…
We dreamed about a life in an A4 format – a nice family car, a nice flat in a semi detached house, going to Copenhagen for holidays, taking the kids to Tivoli…
We don’t know anymore how there will be regarding Tivoli, but we still have the family car and we still have our semi detached house.

Our aim is hereby: we will stand together as a family -
heaven and earth will be moved to make sure that little Vegard will grow up and feel loved – because of whom he is.
We will strive to give him a good life, and the ability to feel the joy of life.
We will strive to give his big brother a good life too -
to see him as an individual as well, with his own needs, joys and sorrows,
so that not all in his life will be abouth his ill little brother.

The first seizures

Vegard seemed to be a very satisfied young man. He ate a lot - and he slept a lot – and he did what little babies are supposed to do in his nappies. The only remarkable thing about him was that he was very jumpy. If there were sharp sounds, or by the slightest touch, he jumped, and we called him lovingly “little hare heart.”

When Vegard was exactly three weeks old, something happened, that scared the wits out of us. I had never been able to breast feed, so Vegard was fed with a bottle from day one. This evening, Ørnulf was sitting with Vegard, feeding him, as our child suddenly crouched like a banana, he lost his breath and turned blue. It all passed within seconds, but if felt like an eternity.
Since Vegard was fed as this happened, we figured that he had got milk down his purl throat. We thought no more about it, and put it down to one of life’s frightening experiences, that luckily ended up all right. But, later that evening it all happened again. Vegard was sleeping peacefully beside me in the sofa, when he all of a sudden crouched like a banana. Once again he stopped breathing and turned blue.

I immediately called the emergency number, and I was told they would send an ambulance. I called my brother and sister in law, and they came to look after Erik, while Ørnulf and I joined the ambulance to the hospital. Never in my life, I’ve felt so small and frightened, as I was sitting in the back of an ambulance, with my three week old baby, being rushed off to hospital.
We were received very well at the hospital, by warm, caring staff. We stayed there for one week, and there were several tests done during our stay. There were blood tests, urine samples, the physiotherapist did tests on the baby and he was checked by an eye doctor. Vegard had an ultra sound of the brain, and they took two EEGs. All test results came back showing nothing wrong, and the two EEGs showed no signs of epileptic activity, even though Vegard had several seizure like fits during the hospital stay.

The doctors then put a tube down Vegard’s nose, to measure if he had reflux. This showed that our baby was suffering from this quite badly. The doctors were now quite happy to calm us down, telling us that Vegard was most likely suffering from reflux seizures, which looks very much like epileptic seizures, and can be quite dramatic to watch for the parents, and not very nice for the child to have. We were told to give Vegard something called Gaviscon after each meal, this should calm down the contents of his tummy, so it would not come back in his throat.
It was a pair of very relieved parens whom took their baby home, and could tell family and friends that there was nothing seriously wrong with the little boy, and that with the help of medication, he would be right as rain again.


Ph registration, diagnosing the reflux








The birth

Vegard was born at the hospital in Drammen, Norway at 7.42 am Tuesday 4th of January - after having stayed in my belly for an extra 14 days past due date. I was supposed to go to hospital the very same day, actually - at 8 am - to have the birth started - but Vegard decided to come by his own will.

Contractions started slightly around 9 pm the evening before. By midnight we called the hospital and asked what to do. They told us to get a babysitter for Erik, Vegard’s big brother, who was just under 2 years old at that time, just in case - but to wait and see for a while yet. We called the boys cousin and his fiance, and alerted them.

At 2 am we arrived at the hospital - and were told to go home again - not enough action yet. Since I was due to be back at eight o'clock anyway - I was offered a bed there - and accepted it. My husband Ørnulf was to go home, but he never made it that far - because by 2.30 the action really had started...

It was a pretty tough birth - both physically and emotionally - but luckilly quite fast - and it was all forgotten about as soon as I had my baby! Vegard was a healthy, beautiful – and very angry – little baby. He was 54 cm long and weighed 3910 gram.


Vegard 36 minutes old