dinsdag 7 februari 2012

New drug

So we finally started a new drug, called Lamotrigine. We started with a very small dose and we will build it up for 12 weeks. Going this slow is important in order to prevent Kalle from getting a serious side effect: a skin rash that can be life threatening.
It's scary. Some parents told us their kids got more seizures instead of less while taking Lamotrigine. On the other hand...if you read about side effects too much you stop taking aspirine...
We figured we have to give it at try since Kalle's seizures got worse. He also has real tonic seizures now. His muscles contract, he stops breathing for a couple of seconds, his face turns red, he sticks his tongue out. It looks terrible.

We really want the new drug to work. But chances are small. If you tried a couple of drugs that didn't work you have to be really, really lucky to find one that does.

So let's hope this will be a lucky shot!

Kalle enjoyed a walk on a cold winter day

maandag 2 januari 2012

2 Birthdays

Last year :-) , at the 28th of december Kalle had his 2nd birthday.

Thanks for all the birthday cards, txt mssgs, emails and FaceBook-comments! As we want our big big fellow (Liko is our little big fellow) to be near us as close as possible we are happy he's here as part of our world.

Today is a sadder day: for us it marks the 'birthday' of our biggest sorrow: we can't help but re-living it in our minds.
Today two years ago we raced Kalle to the hospital in the early morning, where he had to stay because he was too sick.
After that day, things only got worse.

Weeks later we knew the meningitis caused Kalle a huge brain damage: a life-long burden he -and we- has to wear.

Months later we couldn't deny Kalle got another true enemy in epilepsy. And he even got diagnosed with West Syndrome.

Years later -now- we realize that our little fighter will have a life with uncountable enemies-from-within:
it's almost unexplainable how deep a brain damage this size cuts in all parts of your functions. Therefore the future is such a question mark.

Only in two years, Kalle's life included 5 stays in 2 different hospitals, series of drives to the ER of Sophia Children's Hospital, loads of different meds, different kinds of therapy, way too much different kind of seizures, sadly enough increasing in length and heavyness.

We know we do everything we can. People around us try to do everything they can, which we surely appreciate. But it's simply not enough.

Kalle isn't getting any better. Most of the time he's not happy with how he has to live.
And that is so hard to celebrate.

We wish our sweet Kalle a year where the seemingly impossible happens.
We wish our Kalle a smile on his face...

Here's some snapshots from last month:

Asleep in the wonderful Wolff-van Beurden-mansion in Berlin-Karshorst with Mausi
Daddy's got a new app...
Kalle and his niece Jonne on Twitter
Just like my Dutch grandmother,
Marianne loves me so much!
With daddy and Liko in a café at
Helmholdtsplatz, Prenzl' Berg on a rainy day
With my bro' Liko