11 December 2006


He was meant to ring between half past three  and five o’clock. We’d been given a time. He’d be ringing to give us the results from the gastroscopy, and we were just to wait by the phone. The doctor was to ring and tell us whether or not Abbe would ever be able to eat food containing gluten. Do you think he did?

Not a sound from the phone. I must have checked the time of day a hundred times but I didn’t dare ring home, didn’t want to keep the line busy. At ten past five my wife rang.
– Did he ring? I asked before she’d even said hello.
– No.

That really ticked me off. “How the hell can they expect you to go around, for an hour and a half, nerves on end, waiting for a f-ing phone call that never comes?! I’ll ring him.”

After a bit of research I managed to get through to the right doctor through the hospital switch board.
– Hello. This is Abbe’s dad. You were meant to call us.
– Yes, ehrm … Let’s see now … ehrm … if I can find the papers …
– I’ll hold.
– Ehrm … I don’t seem to … ehrm … have the results yet.

But for gods sake, they booked the time, shouldn’t they at least have their papers in order?

– No, ehrm … I have no … ehrm … answers.
– Right. Can you find some then, and call me back?
– I don’t think so … ehrm … at least not today.
– Fine. Tomorrow, then.
– Ehrm … I’m kind of busy … ehrm … for the rest of the … ehrm … week. And then … ehrm … I’m on … ehrm … holidays until christmas. We’ll have to … ehrm … book a new … ehrm … time. After Christmas.
– After Christmas?!?
– Yes … ehrm … allright?


9 December 2006

At the photographers.

We were having a few photos taken, Christmas gifts for the grandparents. We went to a photographer I’ve worked with, called Anna. It wasn’t all together easy to get the model of the day to stay put, in front of the camera. Abbe was all over the place. Pressing buttons and peeing on the props. The pictures turned out well, though.

24 November 2006


Right. Junkfood is bad for you. It’s a well known fact and has been the topic of many a debate. Films like “Supersize me” serve to clear away any lingering doubts. Too much fat, too much sugar and not at all GI.

Every good parent knows to keep their young ones as far away from the whole thing as possible. There. But most parents also know that children love the stuff. Dilemma.

After struggling for a year and a half with Abbe’s eating we happened, one day, to visit Mac Donald’s. Abbe had a Happy Meal. Abbe loved it. He took his time, each french fry got it’s fair bit of attention and he ate it all. Every bit of food, every sip of coke. On his own. Happily. We didn’t stop at the one visit, or the one fast food chain, for that matter. But there’s always that sting of bad conscience, it’s not the healthiest of options. Fat and sugar.

“Cut out the conscience crap”, said my sister (the pediatrician, remember?). “Fat and sugar, there’s plenty of energy in that?! And  isn’t that just what Abbe needs the most? Energy? Just relax and enjoy the fact that he’s eating.”

So be it.

14 November 2006

Anaesthetic mask.

Trying to put a needle (for the peripheral venous catheter) in Abbe was, as always, adventurous. And this time it just wouldn’t work. No needle. We have a few favourite nurses in ward 323, they know exactly how to get the needle in place, almost always on the first try. But the rest of them haven’t really got a clue. And when clueless they pull out the mask. I sometimes wonder why the bother at all, with the needle bit, I mean. The mask is there, isn’t it? But I think they’ve somehow got more control over the intravenous procedure.

When Abbe opened his eyes he was as pitiable. His throat all sore after the intubation (respirator) and gastroscopy (camera in tube down throat) and his eyes filled with silent accusation. How can you let them do this to me? Mum? Dad?

Good question, that.

9 November 2006


The doctors on the nutritional team suspect Abbe’s not only allergic to milk but to gluten aswell. They think he’s having a hard time getting all the nutrition out of what he actually eats. That he’s not growing fast enough. I don’t know. I mean, honestly, he doesn’t eat that much, mightn’t that be the problem?

I desperately hope they’re wrong. They took two blood samples, one indicated a gluten intolerance. And here’s me finding the milk allergy hard enough to deal with.

Abbe has a cousin who’s gluten intolerant, when they meet we’re all kept on our toes. Cousin musn’t under any circumstances get to the crumbs from Abbe’s biscuit and vice versa. Granny dives under the table with a broom whenever something edible is dropped on the floor.

Anyway, the doctors are looking into it. Gastroscopy appointment set for tuesday.

23 October 2006

Writing off the hip problem.

Good stuff! One item cleared off the list. We saw the orthopaedist today, back for the last check-up after Abbe had started to walk, which he’s been doing for a while now.

He passed. Both the x-rays and the results from the “pulling-of-the-hips” test looked good. Abbe’s well again.

At least his hips are.

2 October 2006

The eyes.

How does one check the eye sight of a tiny toddler who’s not yet able to read? Or even talk.

– Please read what’s on the bottom line.
– ?!
– Right, how about the line above it?
– ?!!

No, that won’t work. But there are methods. First you trick the one and a half year old into looking through the big binoculars, somehow. Oh, so that didn’t work? Scared him, did it?

Right, well then you make the child look at something intreresting, wide eyed and completely still… Meanwhile you use the laser gun like instrument and shoot a ray straight into the little eye. And, believe it or not, that worked. But it took a dad’s lap to sit on, a nurse to wave a funny toy over another nurses head, that other nurse aiming and shooting the laser thingy.

Abbe was shown pictures of lines which, after looking for a while, could be made out to be figures. He looked, and the doctor held different prisms in front of his eyes. When Abbe reacted to having seen something, she changed the image and the prism. Don’t ask me how she knew if he’s astigmatic or not, but she seemed happy enough with the whole thing.

Many 22q11 children have problems with their eye sight. Being cross-eyed is a common one. The doctor tried that one by holding a pen closer and closer to Abbe’s nose until he looked completely cross-eyed. She was happy with that to. Strange. I thought the whole point was for him not to cross his eyes?!

And so, finally, the letter board. But instead of D’s, G’s, O’s and S’s it had pictures on it, in varying sizes. Larger at the top and smaller at the bottom. Abbe was to tell them what he saw. Well, telling as in signing some and trying to say the namne of others. The ones he didn’t get were just left.
Conclusion. Abbe seems to have good eye sight. We’ll come back when he’s older, for more tests.

21 September 2006

20 September 2006

Lisa and the sandwich.

There is a girl in big brother’s pre-school called Lisa. She loves Abbe and always has a hug for him when we come to leave or pick up his big brother.

The children usually bring sandwiches or fruit for the morningtime. About a week ago, Lisa was at the little table having a sandwich when Abbe joined her. She offered him a bite, of course, but one of the teachers, who knew about his milk allergy, stopped her and explained the matter.

On the way home in the car Abbe tried to communicate something. My wife was doing her best to get the picture and after about twenty questions came to this conclusion:
– Is it a sandwich that you want?
– Mhm. Abbe nods his head.
– Like Lisa’s?
– Mhm. Smiling now.

She made him a sandwich resembling Lisa’s. Abbe ate. He ate the whole thing. No fuzz, no desperate stuff like parental bribing or playing while eating, no nothing.

This is a serious breakthrough. Thank you Lisa.

7 September 2006

Sign language.

Abbe will be late in speaking. They always are. (Feels odd, speaking about children in that manner, ones own in particular. Like a herd. A race. People like him.) Anyway, children with Abbe’s syndrome are usually late speakers.

There are several reasons for that, one being the submucosal cleft palate that Abbe and most of his 22q11 friends have. So it’s not just a psychological thing, it’s technical or rather anatomical aswell.

To help Abbe along, we’ve started using support-signing. It’s kind of a light version of the sign language. He’s into it big time and he’s incredibly sweet when he uses his signs. Sometimes it’s impossible to see what he’s on about, one has to do an awful lot of guessing and carefully look at the sum total of each given situation.

The other day, Abbe dragged a log of wood across our livingroom floor. It was almost the size of himself, and he struggled along. Eventually he dropped the berch-log at his mum’s feet and made the sign for  “fire”.

Getting a bit chilly in here, isn’t it? was his point.

(NB this is the swedish sign for fire)

21 August 2006

Mun-H-Center (Swedish national orofacial center of expertise).

Doing the right thing is not always easy. Heart children can have a bad dental status for various reasons, as  I’ve mentioned before. On top of that poorly mineralised enamel and dry mouths often go along with the 22q11 syndrome. In other words Abbe’s teeth are very vulnerable.

But then there’s the feeding issue. The easiest time to feed Abbe  is while he’s asleep. And that’s not the cleverest of things teeth-wise. Then add the toothbrushing dilemma. Abbe is not exactly friends with the toothbrush and starts a small scale war everytime he sees it coming. How to do the right thing? Beats me.

We told one of the 22q11-specialists on Abbe’s team about our concearns – the dentist at Mun-H-Center at the Sahlgrenska Hospital. “Stop worrying”, she said “You’ve enough on your minds as it is. We’ll deal with the problems if and when they arrive.”

Tear-time again. This time out of joy. There are people who can handle people in this world. On top of being brilliant at what they do. Food for thought, huh, orthopaedists? ;-)

18 August 2006

M, n and ng.

Did you kow that the sounding of all Swedish consonants but three require a blocking of the airstream between the mouth and the nose? No. Air. Allowed. Through. Or else it’s not a consonant. Not a right soundning one, at least. The three? M, n and ng.

Pieces fell into place when I was told about this at the speech therapist’s today. Abbe obviously has some sort of cleft palate. Not visible to the eye, probably something in the soft parts of the palate. I think it’s called a Submucosal cleft palate. No one has examined him as of yet, but with my new found knowledge on the sounding of consonants it seems likely.

That’s why Abbe says Mamma without a problem but not Pappa (I was beginning to get a bit jealous). And that’s why the s sounds a little like a sneeze when he says is (ice). He’s taken to the Norwegian word for icecream you see. Possibly to avoid the letters l and g, aswell (Ice cream in Swedish is “glass” and in Norwegian it’s “is”). Or because he’s allergic to milk. In Abbe land ice cream simply equals ice (“is”).

25 July 2006

30 June 2006

A week in Corsica.

This is the life. A week in the sun with my mum and dad and big brother.

12 June 2006

Eating with an audience.

We went to see a speech therapist today. Not really a speech one, as such, but one who works with the technical part of the matter. They wanted to see if Abbe had problems with his mouth motorics, if he chews and swallows properly and such.

We’d brought different types of food for him to eat while they watched. Felt a bit awkward, to say the least. The next step is for him to eat food containing contrast fluid sitting in an x-ray machine. As if this wasn’t weird enough.

24 May 2006

Hearing test – revised version.

I was a bit upset yesterday. I know.

It took a nights sleep to realise that they were actually pretty cool at the ear doctor’s. When the meter test wasn’t working, they tried another method. Probably not as scientifically reliable, but still.

Abbe was put in a room with two boxes. One at his right and one at his left. Not many one year olds will accept wearing headphones or manage pressing buttons so they use these boxes instead. With an intricate litte reward system to go with them.

Beeps came from the two boxes at different times and Abbe was being carefully monitored. If he looked towards the beeping box a lamp with a funny figure would light on it, as a reward for him having done the right thing. Children love stuff like that, and they’ll want to get the box right every time.

Abbe got a fright, though. When the lamp lit up and the funny figure started jumping around, he started crying. The test was then done without the reward bit and Abbe’s hearing seemed good. We were asked to return in six months time to try the “thing-in-ear-test” again, maybe it’ll work out then.

You wish.

23 May 2006

Hearing test.

Dear one year old. If you just hold still for a while, this man is going to put a little thing into your ear. You then have to sit still and be completely quiet for about ten seconds so that we can do this test. We have to check your ears, you see, since many children with your diagnosis have problems with their ears. Hold still now, and be quiet while I hold this echo sounder in your ear. For ten seconds.

What were they thinking?

9 May 2006

Dearest big brother.

It’s not an easy job being the brother of someone who’s sick, for real. Abbe’s brother had to grow up so fast when Abbe was born. We ask so much patience of him, so much responisbility and consideration. Way too much to ask of a two year old, really. It hurts. He’s young.

Because things are the way they are around mealtimes, Abbe’s brother has had to step back an awful lot. If Abbe is to eat at all he needs peace and quiet.

When I sat down to feed Abbe today big brother came along. “Oh, are you feeding Abbe? I can go to my room if you like?”

Sweetheart. Your life shouldn’t have to be like this, you’re only two and a half.

19 April 2006

Solveig’s posse.

Ever since Solveig took us under her wing, the amount of official looking envelopes in our letterbox has increased. All letters from any branch of the health care system will obviously raise the pulse somewhat, but these days most of them contain times for return visits, tests or examinations. Abbe is frequently examined by different members of the regional 22q11 specialist team.

And once more I realise how lucky we are to be living close to Gothenburg. I can’t remember how many different doctors and specialists Solveig sent letters of referral to, but it was quite a few. And as far as I understand, if you’re from some other part of the country they put all the times in a row, within a week or so. Which is nice, I mean that means less travelling, but the stress of it? Doing it all in the one go? Especially for the child in question.

10 April 2006


When Abbe’s brother was born we signed him up for the local Montessori pre-school. It had been recommended to us by friends and we decided to try it out. Unfortunately he didn’t get a place there, gender qoutation and rules concearning siblings put a stop to that. Another option arose, a parents cooperative, and he’s been happy there ever since.

But when planning Abbe’s future and schooling, Montessori seems like a brilliant idea. If big brother had a place in that pre-school, Abbe would automatically get in, the sibling rules, right? So I got in touch and they could offer big brother a place in the autumn. Perfect! We said yes please and thank you and also put Abbe on their waiting list.

Big brother making sacrifices again. Leaving his friends in pre-school to give Abbe a better start. It’s not easy, this balancing act.

24 March 2006


Reduced capacity, slight retardation, possible learning disabilities. What the heck does that mean? I keep stumbling across words like these when I try to read up on Abbe’s syndrome.

I asked Solveig (the 22q11-doctor, you know), when I met her at the 22q11 society meeting, about this.
– How common are learning disabilities in the 22q11 children, Solveig?
– I’ll be honest with you. More or less all of them have problems. Approximately 50% are classified as retarded to some extent, but all of them do have problems with learning.

Did I really want to know?

18 March 2006

Annual meeting.

It was kind of creepy. The 22q11 society had their annual meeting. It felt unreal.

One of the lecturing rooms in Queen Silvias Childrens Hospital had been put in order for the meeting, there were coffee and sandwiches, fruit and buns. All as nice as can be. But I felt like a UFO.

This is a small society run by a number of enthusiasts, with relatively small funds. After having gone through the obligatory paragraphs of an annual meeting, like elections for various posts, the chairman’s report, economic matters and such, it was time for the information part and the questions. And this was when I started feeling awkward.

I think I was the only one there with a child as young as Abbe. The questions brought up felt extremely far fetched. And unreal. I mean, Abbe’s not like their children, is he? My little piglet wont be facing difficulties like those, will he? No, this must be wrong.

During the break I just stood there listening to the others talking. They all seemed to know each other. With a sandwich in one hand and a cup of coffee in the other I stood – numb – listening to discussions about special schools, children asking questions on why they’re different, ADHD, Autism, you name it. It all melted in my head and formed one giant lump. A not so pleasant one.

Afterwards I talked to Solveig (the 22q11-guru) who had also attended the meeting. I told her I had trouble relating to the whole thing. She answered “Of course you do. Just take one day at a time. I think you’re brave for showing up here today.”

I’ll drink to that.

13 March 2006

Club activities.

Abbe is a member of two clubs, or societies. Or, rather, our family is. We became members of the Heart childrens association as soon as Abbe had undergone his first surgery. His obviously had a heart condition and it felt natural to join.

The other one was different. The chromosome aberration they told us that Abbe had, felt unreal and very distant. I mean, there are no signs of it yet, he’s to young for it to be noticed. Having said that, he has got very long fingers. We noticed that as soon as he was born and later found out that it’s connected to the 22q11 syndrome. But other than that, there are no signs.

We’ve been hesitant on what we’d actually get out of a membership in the 22q11 society. Besides, we try to maintain some sort of normality in our lives and not just hang out with other parents of sick children. Enough is enough. Does that strike you as odd?

We finally decided on joining, anyway, and their annual meeting is on saturday.
I’m going.