30 October 2005


Ever tried to insure a child with a congenital heartdisorder and a chromosome aberration? I have.

It’s common knowledge that one cannot get a life insurance after receiving a death sentence of some sort. That’s understandable. It just wouldn’t work. I mean, it’s a nice enough thought, making sure your loved ones are taken care of after your’e gone, but not for the insurance companies, there’s no business in that. That’s why we were somewhat relieved to have signed up for a Pregnancy-insurance and a Mother and Baby-insurance with Trygg Hansa, before Abbe was born. He was healthy, as far as anyone knew, when we signed up for it. Nice to know we’d be covered.

Or so we believed.

When we claimed the health-insuance part we were told that it’s not valid if the child has “congenital disorders or malfunctions…blah, blah…chromosome aberrations…blah, blah…i.e. Down’s syndrome and congenital heart disorders.” In plain English; all the times when you would really need the insurance.

In other words, completely useless, but a great way of getting customers straight after birth. After a couple of months you receive a letter with an offer of prolonging the insurance and letting it become an ordinary health and accident insurance for your child. And why not for the mother, while you’re at it?

I’ve done some research. An ordinary  health-insurance seems to be out of the question. Anything connected to the heart condition or 22q11 is excepted from tha insurance. It doesn’t take much to figure that that about covers everything we might need help with. What we can get is an accident-insurance. Abbe might fall of his bike or hurt himself in some other way so that might come in handy. There’s one exception, though. An insurance company with a different approach towards people with congenital disorders. ACE insurances, it’s called, and it’s not that big in Sweden yet.


22 October 2005

The dietist.

We’ve been seeing a dietist. It’s a constant struggle, trying to get Abbe to eat, and they’re helping us us find out the reasons for him not wanting to.

Feeding times are still 07, 10, 13, 16, 19, 23 and 03 and we still give him the milk-free substitute. We still take carefull notes on how many milliliters he actually eats, we dare not do anything else. We’ve also tried giving him puree. It's not going too well.

Why is this such a problem? Is it a technical thing? Does he have anatomical impediments? Mouth-motorics, cleft palate, all that stuff? It’s a huge stress factor, this constant struggle against the weight and length diagrams.

We told the dietist about our DIY-cardex, our lists of Abbe’s milliliters. She smiled and asked:
–How much does he eat in a day?
–Eh…700ml, we answered.
–And does it vary a lot, from day to day?
–Why don’t you stop taking notes, then, and relax a little? You know pretty well, don’t you? That he’s getting enough?

Sometimes you feel like a complete idiot.