At the speech therapist

Today we saw the speech therapist again. That’s the woman who is part of the 22q11-team. We have another speech therapist, at the habilitation unit. It might sound a bit weird, but they have two different roles. Or, rather, they will have, with time. The one at the habilitation unit is sort of following the daily development and the one we saw today is responsible for the anatomical side of things. Doctor’s examinations, potential operations, reports to our own Solveig. I appreciate it’s not easy to keep up with this, I hardly manage to keep up myself.

Anyway. The speech therapist (eg the one who...well, you get the point) brought out a box with lots of things in it. There were little chairs, tables, cars, trains, dolls, cows, horses and so on. Lots of nice little stuff, I must admit. She starts a tape recorder and lets Abbe rummage the box.

– Oool, said Abbe (chair). – Mamma ool (mum’s chair). – Nenning (baby formula, about a little feeding bottle). – Ääshhht (horse). – A-afhh iiil (dad’s car).

And on it went. He did so well. And was so sweet. I melted like ice cream in the blazing sunshine, and grasped most of what he said. The speech therapist understood a bit. But I doubt you would have. You simply need to train a bit on the Abbe-language first. The speech therapist said he seemed to have a good perception of the language. He constructs short sentences, imitates etc. She differentiates between speech and language, we learnt. We talked a bit about what to think about, what to try to avoid and how come he doesn’t have consonants. You know, those M, N and NG-sounds.

I asked optimistically if this is something you can train for. After a slightly too long, pregnant paus, she did that clenched ‘well-how-shall-I-say-this’-look and tilted her head sideways. I’m sure you’ve seen it. And know what it means. No.

It’s about anatomy. Abbe’s palate just doesn’t go all the way back in order to obstruct properly. So the air is streaming where it shouldn’t. And consonants like b, d, g, k and t become impossible. You can’t train for that.

Deep down, I actually knew this all along. I mean, I’ve read up on all this. I consider myself a reasonably intellectual person, who sees things with a clear sight. Even so, I had been hoping there would be a way out. Maybe you can train. But no, instead it makes me so bloody sad.

Pathetic.

Gameboy.

Abbes older brother has inherited an old Gameboy I had myself, in the 90s. Old, tired graphics compared to today’s gadgets, but he doesn’t care. He loves it, has already found functions I didn’t even knew existed in these games and has been thrashing me since way back. Four and a half year’s old! Of course, Abbe wants everything that his brother has. Yesterday he was tearing and pulling the Gameboy and shouted out loud: "Iiin ey-oy, iiin eyj-oyj!" (my gameboy). Sweet.

Prepared to cancel.

With hindsight, it was good that Abbe’s operation tomorrow was cancelled already last Tuesday. Considering how ill he has been this weekend it would probably have been cancelled anyway. And then we would have been set on him getting the operation and therefore been very disappointed. Are you following?

It’s better now.

Ok. I think it’s time to declare "all clear" for now. Abbe is feeling better now.

Two nights in a row, we have been sleeping tight together, with all the windows wide open in the bedroom, just to get that well needed cold air into Abbe’s throat. The temperature went down a bit during the night, with the help of paracetamol and he was breathing better thanks to Betapred and fresh air.

Abbe’s mum is back from Käringön. She had had a good time and she deserves it. But I need to sleep. Goodnight.

Pediatric Accident and Emergency.

After taking advice from the Pediatric A&E, we agreed on the following. As long as the temperature is going down with the help of paracetamol and the respiratory rate stays the same, we might as well stay at home. But as soon as the breathing becomes difficult we go to the hospital to get Ventolin or similar. She gave me various tips on what to look out for on Abbe – the neck, tummy etc – to see if he needed help.

I gladly avoid A&E. Having spent all those hours there – usually nighttime – I’d rather check Abbes breathing once every half hour, to avoid having to go there.

Health Care Advice Line.

"You are placed in a queue, and you are currently number 3."

Abbe’s temperature is a bit over 40°C and his breathing is very rough and heavy. He is asleep now, in an almost upright position, with all the bedroom windows open. Cold air and upright, as it should be. What’s worrying is the poor oxygen saturation he has from the outset, even without the croup cough. The margins. They’re so tiny. This is why, since 30 minutes back, I’m in a telephone queue to the Health Care Advice Line.

But what will they say? My experience is that as soon as you mention the word ‘heart child’ nobody dares to make their own decisions, without involving a cardiologist. Oh … now it’s my turn, hang on …

Ok. As I thought. Go to the Pediatric Hospital, or call them. I’ll try to call them first.

Murphy’s law.

My wife is away, at Käringön. That’s a wonderful little island outside of Orust, on the west coast of Sweden. She is there with some girlfriends – eating, drinking and enjoying life. Well deserved.

I’m at home with the boys. After the obligatory "yhhs yhhs" with "oh-oohn" and "inn-inn" (Friday cozy night with pop corn and pretzels – in Abbe language), I put the two boys to bed, poured myself a glass of wine and watched the future stars of Idol 2007.

Just as I sat down in front of the computer with the second glass of Friday wine, to write a bit on the blog, I hear what sounded like a dog barking, coming from upstairs. Abbe has got croup.

First time he had it we had to stay at the hospital for a couple of days, him and I. The second time we spent half the night in a waiting room at the Pediatric A&E, with the front door wide open (cold air is good for croup, in case you didn’t know).

And now?

Sudden changes.

One emergency appointment per week. That’s about as much as the pediatric heart surgeons can cope with at Queen Silvia Children’s Hospital. And today they received no less than three little babies with life supporting Prostivas-drip at the 323 unit. It was a case of fitting them into the scheme as soon as possible and then Abbe fell out of the planning as soon as he’d been falling into it. Instead, he got a new appointment, on 23 October.

We bent over backwards to make this operation happen, given the short notice we had. Notify work, cancel various appointments with speech therapists etc, cancel a dinner we had invited people to and sort out baby-sitters for the big brother. Everything was ready to go.

The nurse who called from the 323 unit this morning felt ashamed. She apologized like mad for having messed things up so much for us and tried in every way to explain the situation. But, what the heck, of course I understand. Just two and a half years ago Abbe came in with Prostivas attached to a needle in his scalp, to keep him alive. I know exactly what the parents of those babies are going through right now. Abbe can wait.

Short notice.

Abbe is two and a half years old now. Well, he was yesterday, to be exact.

This morning I had a call on my mobile. I was super stressed because we only had a few hours left before an important presentation for a presumptive client. We had been working hard with this during days, evenings and nights for over a week. I replied and in the other end was the Pediatric Heart unit at the hospital. It’s happening again.

I have known that Abbe is to have a second heart operation, since last time it happened, back in July 2005. And lately, I’ve even been aware it’s to happen fairly soon. There has been talk of October.

But now he has got an appointment for Monday. In a week’s time! They asked us to think about whether it would work with such short notice and get back during the day. It was not easy to focus on our presentation, I must admit, but – I managed.

Dance on my grave.

I do have my low moments, with grim and unthinkable thoughts. How difficult will Abbe’s life be? Will he feel left out, will people understand? Will he be there when I grow old? It doesn’t happen that often, I basically have a positive approach to life. But sometimes, they pop up, these dark clouds.

That’s when I want to listen to a special song, by Bo Kaspers Orkester. It makes me happy and sad at the same time. Gives me hope, in a silly way. I know that Bo Sundström wrote it when he had had his daughter and it probably means something completely different to him, compared to the meaning I read into the lyrics. But what the heck, it does it for me.

Some time ago I was at a BKO concert in Gothenburg’s concert hall. I remember thinking it started a bit lousy, but the song I am talking about came up as third or fourth. That’s when it all changed. My hair was standing on end and tears were running down my cheeks. And the rest of the concert was magic.

"They want to teach you how to crawl, how to walk in step. 
They want to teach you how to march, how to stand to attention. 
Stand in line and clap your hands, agree for the sake of it. 
Learn how the wind turns, walk in a straight line for the sake of it.

They want to teach you how to lie when things are against you.
Learn how to bow and scrape to some idiot. 
I want to teach you how to dance, if it will ever happen. 
If I get to decide about things, then you’ll dance on my grave.

They want to teach you how to doubt on what you believe is true. 
Go around being afraid of your sister and your brother. 
I want to teach you how to dance, if it will ever happen. 
If I get to decide about things, then you’ll dance on my grave."

On Spotify

There will be many doctors.

My wife was looking at the number of doctors we (and Abbe) have to deal with. And this is just counting the regular, recurring visits. On top of these, you have to add the doctors we have met after numerous nights at the Pediatric A&E. But it would be too complicated to include these as well.

So this will be a bit ‘tabloid-y’. "Abbe’s doctors – we have the whole list" Ok. You with me?

Cardiologist – Queen Silvia Children´s Hospital
Eye specialist – Queen Silvia Children´s Hospital
Ear Specialist – Sahlgrenska Hospital
Speech Therapist (speech) – Salhgrenska Hospital
Speech Therapist 2 (speech) – Rehabilitation in Alingsås
Doctors – Rehabilitation in Alingsås
Kidney doctor – Queen Silvia Children´s Hospital
Physiotherapist – Rehabilitation in Alingsås
22q11-specialist – Queen Silvia Children´s Hospital
Pediatric surgery – Our local council
Special Dentist – Dental Care - Salhgrenska Hospital
Dietist – Queen Silvia’s Children’s Hospital
Nutrition team (Speech Therapist/nutritionist/doctor) – Queen Silvia …
Psychologist/Doctor – BNK (Pediatric Neuropsychiatry)
Orthopaedic (guess we’re done now) – Queen Silvia …

Total: fifteen.

Eeeeemiiiim, ömme onge.

You know, I don’t know what it is with Astrid Lindgren. Everytime I read one of her classics to the boys, or watch one of the films, I can’t help but crying a bit, on the quiet. They are so special. So much love and understanding.

And then they go and turn it all into a "theme park". I was sceptical. It must be crap. Pippi Longstocking masks made of plastic and Ronja burgers with Birk fries. Rubbish. However, after having heard enough friends saying how good it all was, we decided to give it a go. Abbe’s older brother is going through a true Emil-and-Pippi-period.

And here I have to concede. "Astrid Lindgren's World" is brilliant! We had a 2-day stay over, in a little cabin. An hour after our arrival the first day we were wondering how on earth we would manage to kill time here? But when we came back at the end of that day, we couldn’t see how we would be able to do all the things we wanted to do the following day.

The place is full of little plays and lots of music and songs (and we know all the songs). All the well-known places in Astrid’s books have been created to function both as stages for the play acting and as playgrounds. The food is ok-ish, but the children seem happy with that, too.

Now, the boys play Emil i Lönnerberga and Abbe is running around shouting "Eeeeemiiiim, ömme onge", the whole day. (From Emils dad who shouted "Emil, förgrrömmade onge", meaning "Emil outrageous kid")




Abbe crawls across on the plank between the shed and the larder at Katthult.
The Big brother became very small, at Nils Karlsson Pyssling’s place.
Abbe as Emil and his brother as Ida.

New headmaster.

I’ve been to Cannes. In my field of work, there is a yearly event where we compete in advertising (Cannes Lions, it's like the World Championship). At the same time, there are lots of interesting talks and seminars. And quite a lot of rosé wine.

Anyway. I came back home this afternoon and was met by a jubilant big brother who gave me a big hug and said: "Abbe is starting at my nursery school after the summer". Nah, I thought. Now he’s misunderstood everything. Abbe has got a place at a nursery school. But at an ordinary, municipal nursery school. We’ve even been there to visit. It seemed good, in every way, and I have started to get used to the thought of driving our children to two different places. Poor big brother, how will I explain to him? I thought he was ok with this.

But then I notice his mum and himself are looking at each other, knowingly … "What?" I say. "What’s up?" The Big Brother can barely keep from laughing and my wife has a big smile on her face. "Yes, the headmaster has had to go" she says. "A temporary headmaster rang us yesterday."

After having been tipped by a few other parents in the association, he started his post as a headmaster by checking out the intake on a gender basis. That’s when he called us.
– I think it’s very strange that Abbe has not been offered a place.
– So do we, said Abbe’s mum.
– Have you got any idea why?

My wife told him the story. She described all the details, all the talks, the support and surprise from the nursery school teachers when they learnt about the lost place and our frustration over the fact that the old headmaster didn’t seem to bother.
– This doesn’t seem right, said the new, and – as a godsend – acting headmaster.
– No.
– We can’t have it like this.
– No.
– Well, then I’d like to offer Abbe a place for this Autumn.
– Thank you.

Inflexible Health Care? Not always.

Today, Abbe has been through a whole range of kidney examinations. Mag3-scintigraphy, Crome-clearance and esophagogram test. Sigh.

He has done a Mag 3-scint before and you can read more about those here. However, Crom-clearance was new to us. It works like this: A substance is injected in your blood, you wait half an hour and then provide a blood sample. Then you wait another half hour and give another blood sample. And repeat. And again. I think we did it seven or eight times in total. Poor Abbe. But he did have a needle fixed all the time, so it wasn’t a case of keeping inserting the needle. The purpose of this examination is to measure the kidney’s capability to clean the blood.

As you might know by now, it’s not easy to put a needle into Abbe. Although today, it was relatively easy. Abbe was given a sedative (Dormicum) in his bum before they started, so he didn’t move that much when they inserted the needle. I was incredibly impressed. We were meant to come back the following week for an esophagography, but what if he could have done it today. I mean, the needle was already there.

The nurses suggested we ask at the X-Ray unit. Hardly likely to get approval for this, we though … but we went along, just in case.

– Hi. Abbe is to have an X-ray in a week’s time, but we’re here now – and he has a needle inserted already. Any chance you could do it today instead? Then you wouldn’t have to do it next week. It’s not easy with him.

The nurse at the X-Ray reception looked at us as if we were completely bonkers. Then she said “Just a moment” and disappeared for a while.
– You’re in luck, she said.
– Our staff is on a course today, so we have no booked appointments. We only take emergencies. So they could take Abbe after all. Come back after lunch.

Incredible.

Espresso, please.

Abbe is a right little Italian at heart. Prefers espresso, preferably with a piece of Valrhona chocolate.

Discrimination?

I’m angry, bloody angry! And sad. Abbe is not getting his place at the big brother’s Montessori nursery school. There’s such a long queue and it wasn’t Abbe’s turn yet. So what, you might think. But, this is starting to become a bit fishy. And it makes me pissed off and scared.

It should be Abbe’s turn. Going by age, sex and everything else taken into consideration for the admission. There was nobody else ahead of him in the queue. But nope. No place. By pure coincidence, we heard from friends that another little boy had been accepted. "Right from the street". And no sibling priority.

I have tried loads of times to talk to the headmaster. Tried to make her explain what the current queue looks like. But she doesn’t want to know. Instead, we start talking about things like extra resources, the need for support and "we already have a child with Down Syndrome who needs extra resources". And now this is making my blood boil. At the same time, a part of my world is falling to pieces.

Is this the way things are going to be? Is this a first example of the life Abbe is facing? Mistrusted, had people making excuses for him, marginalized and difficult. Is that the way he will be treated? I couldn’t take that.

And we moved Abbe’s older brother from a nursery which he liked, to give Abbe priority to a pedagogy he might come to need. It’s not easy to do the right thing.

Healing well.

Today, Abbe was with me at work. A wall in our office is entirely made of glass, from floor to ceiling. To protect people from falling through the glass (how would that happen?) there is a security bar, at about hip height. A bit like one of those ballet bars in front of a mirror, you know. The only difference being, you won’t see yourself when looking into the glass, but everybody in the street below will.

Anyway, Abbe of course wanted to stand there all the time, to check out the people in the street below. Nothing wrong with that. But then I see him hanging in the bar. Two little hands have taken a firm grip around the bar and my two-year-old is now dangling with his two feet 4 inches above the floor.

It’s not even a week ago he broke his right hand. I know. I saw the X-rays myself. Strange. And mighty.

Broken.

I mean, this is just insane. Abbe has broken his arm! How unfair does it get? The fact that small children break their arms is not that strange, but hasn’t my son spent enough time in a hospital?

It was this morning that Abbe fell out of our bed and hurt himself. I didn’t see how he fell but he must have fallen with his hand first. We tried to comfort him and then the day went on as per normal. However, after a while, we noticed how he hurt, for example everytime he fell and used his hands to break his fall. As the day went on, Abbe developed a way of protecting his hand, he avoided using it or allowing anything to touch it. He screamed loudly when I put on his gloves and later on that evening, we started to worry. I took Abbe to the Pediatric A&E.

We were lucky Abbe wasn’t there because of a flu. There are different doctors at the Children’s A&E and children with a cold had to wait many hours. But for once, we didn’t have to wait too long.

The doctor squeezed him a bit, sent us away for an X-ray, showed me the images and the fracture was indeed a fact. Time to get plastered. Or at least that’s what he thought.

Abbe – who by this stage have a long experience of hospitals – gets scared, angry and sad as soon as he sees anyone in a white uniform. And as soon as dad starts holding him, he knows what’s coming. So, we never got any plaster. The doctor tried some sort of splint instead, but since Abbe protested loudly, the doctor gave up that idea as well.

– Children at this age heal extremely well, he says.
– Even a significantly dislocated fracture usually sorts itself out on these little children.
– We shouldn’t put this little fellow under more stress than we have to. He’s been through so much already. I’ll make him a supportive bandage. This will be great anyway.

And this is when I want to turn to the entire orthopaedic department, to say: There is empathy even in your profession. All is forgiven.

The gastroscopy result.

So, finally, he has been in touch and told us what Abbe’s stomach looks like inside. And it really ended up being a ‘good-things-come-to-those-who-wait’ kinda thing.

Abbe does not have gluten intolerance. Thank goodness. I think he has enough problems as it is, if I may say so myself. Damn, it feels so good to not have to deal with that, too. All in all, a good day.

The mask.

Today, we did an MRI scan, in preparation for Abbe’s next heart operation. And because there was no needle yesterday, he was now to be sedated using a mask.

Abbe usually falls asleep with me holding him in my arms when we go through operations and examinations where sedation is needed. I don't know if I’m so keen to hold him in these situations, that my wife never gets the chance to do it. Or if she thinks it’s tough. I think it’s the former. Personally, I think it somehow feels safe to have him in my arms when he falls asleep. But, that’s when a needle is inserted and the anesthesia enters that way.

Today was different. He was to be sedated with a mask and we then usually leave it all to the anesthetists. But not this time. I sat with Abbe in my arms. They made him breathe in something soothing and odourless via the mask, to relax. So far, so good. But when they turned on the actual anaesthetic, he didn’t want to know.

I don’t know if it was the smell of it or whatever it was, but he was wriggling and struggling, trying to fight his way out of my arms. It was terrible. I had to hold him in a firm grip and press the mask over his mouth. Until he became all limp and stopped wriggling. It felt as if I killed him. Like in a film where James Bond holds something deadly to the mouth of an enemy, until he becomes limp. Ugh.

Bäei ääiin keeuo.

We meet a doctor and a psychologist at BNK (Pediatric and neuropsychiatric clinic) to investigate whether Abbe has any autistic or AHDH symptoms. This is one of the bigger clouds on my Abbe sky. I’m hoping.

So today, it was time for a test. Abbe sat down on a chair, at the psychologist’s desk. I know. It sounds utterly mad. Can you really sit down an eighteen-month-old child at a desk, like you would an adult about to be examined? Answer: Yes.
I was mighty surprised. He sat completely still on a Tripp Trapp-chair and did everything he was asked to do.

The psychologist made him play with various things, he stacked them, sorted them, put the right shape in the right hole and the correct colour in the correct box and so on. But when he got to the listening comprehension test, it all got slightly bizarre. This psychologist had a very broad southern accent. One of those I can hardly understand – me being from Gothenburg.

In front of Abbe were a lot things and he was asked to pick the things she asked for.
– Abbee, wherrrezz the choirrr?? Puzzled, Abbe looked at her.
– Wherrrezz the toiiiblle? Abbe looked at us, still confused.

Chair and table are words Abbe knows. We know that, from home. The psychologist tries a bit of anatomy instead. That’s the standard play back home “Where’s dad’s nose?” and “Where’s Abbe’s ear?” and so on. This will be a piece of cake, I think to myself.

– Oiii keiyyyy, Abbee. Wherrrezz yerrr earrrr? Abbe is now trying to make eye contact with us, “help me out here”.
– Wherrrezz yerrr oyye, Abbeee? Abbe looks helplessly at us. "Eh?"

I wonder what the outcome of all this will be? “The patient shows great difficulty comprehending speech”. We’ll see. I found it hard not to explain to him, in Swedish. He knows this. But I kept away from the test. And I managed to keep from laughing. But it wasn’t easy.

Anticlimax.

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?

Idiot.

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.

Junkfood.

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.

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.

Gluten.

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.

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.

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.

Brothers.

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.

Green stripe pyjama boys.

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)

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? ;-)

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”).

I want in!

A week in Corsica.

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

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.

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.

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?

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.

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.

Montessori.

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.

Hard.

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?

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.

Happy first birthday, sweetheart!

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.

Heartwise.

The return visits we’ve been to since Abbe’s surgery in July, have all gone really well. His saturation levels have been up on 85% and his heart, the shunt and his vessels all looked fine on the scan (the
ultrasound).

All as it was planned, that is.

Lucia

December 13 is Lucia Day in Sweden. A tradition with white gowns, lit candles and children singing.

Abbe’s mother was out of town and we had a Lucia-do to go to at big brother’s kindergarten. There were a few things too many to keep in mind. Sitting on the floor with mulled wine, saffron lucia-buns, gingersnaps … A pointy star-boy’s hat that wouldn’t stay put on big brother’s head and an Abbe-lad who kept falling around the place whenever I tried to put down. On top of which I was meant to be taking photographs.

Necessity is the mother of invention.

One, two, three – shoot.

When margins are small one does not want the RS-virus or the flu. We’re well aware of it – been there, done that. So all heart-children are vaccinated against the RS and the flu.

The RS vaccine doesn’t fit into one syringe. It’s too big a volume, basically, to give in the one muscle at the one time. Giving two shots in a row wouldn’t be too clever either, the second one will not be welcomed by the little reciever. So they’ve a special trick to get it done.

Two nurses came in and prepared the vaccine in the two sepapate syringes. Wonder why, thought I. Then, all over sudden, “ Allright … one, two, three” and before we knew it they’d put one needle into each leg and the whole thing was over. Just like that.

It caught me by surprise. But it’s clever. One pain. One cry. Done.

It’s to be repeated thrice this winter, though.