Christening.

Abbe was christened today. A lovely little family ceremony. Big brother thought it all right that Abbe wore a dress, but commented on it being a bit on the large side.

The priest was Icelandic and she happened to be aquainted with Solveig, Abbe’s 22q11 specialist. It’s a small world. Or Iceland is small. In Gothenburg.

To tell or not to tell.

We talked a bit, my wife and I, on the matter of what to tell people and what not concearning Abbe’s chromosome aberration. I mean, we’re all prejudice. If I say chromosome aberration people hear mongoloid, retarded and so forth. We simply don’t know enough. And to be honest, I didn’t know of many chromosome aberrations but Down’s syndrome, before Abbe was born.

What we don’t want is to give people a set idea of Abbe as a person, risking thet it be self-fulfilling. Like “you become what you’re being treated as”, if you get my point. If we choose to tell, will pre-scool staff, scools, friends and aquaintances see Abbe for who he is or will they be searching for handicaps?

On the other hand, if we don’t tell, they’ll notice anyway. Without a diagnosis, a name for it and an explanation, they might just find him odd. When you know you know. Imagine the amount of explaining one would have to do otherwise.

And yes, you’ve probably guessed what conclusion we came to. So now everybody knows. Including you.

Food – a battle.

We don’t give Abbe breast-milk anymore. My wife stayed at it for a very long time, but there has to be some sort of a limit. We’ve left the pump back and our basement is full of jars labeled Profylac. It’s a milk free substitute. Or, rather, it’s based on cows milk but the proteins in it have been tamperred with so that sensitive little tummies can deal with them. The consequence being that it tastes nothing like milk. It’s rather disgusting, as it were, undrinkable in my oppinion. Bitter as methylated. But milk free.

No wonder Abbe wont eat. On the other hand, he was just as reluctant when the yummy mother’s milk was on offer. They say feeding problems are common among heart children in general and 22q11 children in particular. So he’s kind of top scoring there, I suppose.

Sometimes he’ll slurp down his 130 ml of Profylac in less than a half an hour. Sometimes.On a perfect day. The right temperature, no colds, no blisters anywhere and preferably just the two of us, at home in our living room. Most of the times it’ll take an hour or more to get him to eat the smallest required amount. And a lot of the times he’ll end up screeching with panic, refusing to eat altogether.

Had he been an avarage baby, we probably would have left it at that. Thinking – Ah well, he’ll eat when he’s hungry. But it’s different with heart babies. He needs to eat every third hour to keep up with his weight and length curves. And he needs to eat a certain amount daily or the curves will (dala) even more.

It’s an ongoing struggle. Tough, tiresome and a constant source of stress and worries. Some days we’ll find ourselves (en hårsmån) away from giving it all up. What keeps us going then is knowing what the option is. Enteral nutrition. He’s not having food through a tube up his nose. Not if we can help it.

Childcare allowance.

I know. It’s not the first thing that springs to mind when you find out that your child is ill. But after a while, when the chock has settled and life starts trodding along, you realise. It’s not for free.

Medicins, special food, travelexpenses and parkingfees for all the trips to hospital and doctors, lost incomes and so on. And what’ll it be like in future? How much special care will he need? Will he be going to an ordinairy school? What’s all that going to cost? Will we be able to work full time?

At hospital they advised us to apply for childcare allowance. I had never heard of it til then. But still. It’s dealt out by the the Swedish Social Insurance Agency and anyone who’s ever tried to fill in one of their forms for parental benefit will understand how ominous this sounds.

After a few hours of thinking, twisting words and turning them, we’ve finally filled in all the pages of the application form, got the doctor’s testimony to go along with it, stamped it and posted it. I’ve been told that they’ll now call us to some sort of an interview, where we’ll have to tell the whole story once more. Effectiveness the Swedish Social Insurance Agency style.

Nuchal scan.

I found an interesting paper today, that I had completely forgotten
about. Before Abbe was born, my wife went to Linköping to do a so called
Nuchal scan. It’s an extended ultra sound scan where they take a closer
look at the thickness of soft tissues of the nape of neck of the fetus. They also
take a closer look at the heart. All to find out if there might be any
chromosome aberrations, Down’s syndrome, or the likes of it.

Our journal reads; “The risk of carrying a foetus with Down’s syndrome
was before the scan 1/190 (age risk) and after the scan 1/1573 (age +
NUPP 1.5mm)”

1 out of 1573. That’s a pretty small risk. But of course it doesn’t
mention the 22q11 syndrome.

On the other hand. Had the risk of having a child with Down’s syndrome
been 100%, he or she would have been just as welcome. And had I known
then that Abbe was to have the problems that he has, I still wouldn’t
have given it a second thought. No way.