vrijdag 3 december 2010

Superstitious note to ourselves:

never, ever tell people 'the nights are way better these days'!
We did that a couple of times already and <believe it or not> everytime we ended up with a Kalle that kept us awake for the most part of the night.

Last night we were there again. Just like two weeks ago, something went wrong with his sleeping-medicine.
As expected the time he spent today at De Kleine Kapitein, the medical kindergarden he attends almost every friday, was not all that relaxed. His body showed a lot of epilepsy.

Apart from that: Kalle is doing quite good on the ketogenic diet.
He drinks his bottles without much protest, though he chokes a lot. That's not a good thing but we do everything we can to help him keep on drinking. Please, no feeding tube for Kalle!

Did we already mention that Kalle shows signs that he takes more notion of what's going on around him? Seems like he's more and more able to look at us, to try to play with his toys. You may zoomed in to our brave lil' boy to notice but still: things are happening in some sort of way. And that's exciting to see.

We were told that it may take up to 3 months to see results.
So help us keep our fingers crossed.

We're not looking forward to the end of the year. The end of december and of course the start of the new year is a time full of bad memories for us. Frankly: all days where the weather is cold, a little snowy remind us of the days that we started to realize that Kalle is not our original Kalle anymore.

More updates coming soon.

Jan

2 opmerkingen:

  1. heel herkenbaar , van destijds met onze Iris (over het slapen).
    maar ik ben heel blij met het goede nieuws dat Kalle lekker helder is. Jullie gaan een moeilijke periode in maar gaan ook Kalle zijn 1e verjaardag vieren. dat is een echte mijlpaal voor papa's en mama's . fijn weekend toegewenst en tot volgende week in Bergen op Zoom.

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  2. Hoi Jan,
    Beetje raar om zo weer contact te hebben na jaren, maar ik ben erg onder de indruk van de wijze waarop jullie jullie emoties en ervaringen met Kalle met de wereld delen. Goed om te lezen dat het nu wat beter lijkt te gaan, ook al weet ik maar een beetje wat annemiek me heeft verteld. Ik wens jullie heel veel sterkte en ik volg jullie met belangstelling.
    Groeten, Dieta jetzes

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