Life on a see-saw

Well, I ended last year intending to up date this regularly but life on the see saw continues.

One thing I hoped for was fewer appointments for the kids - epic fail on that one! Between 10 Jan and the end of Feb we will have had 10 medical appointments and possibly more. That's 10 in 7 weeks.

We really spent January recovering and re-grouping after the maelstrom of events and emotions of December and I, for one, still find it incredible to think we're only 9 weeks out from the twins birth.
It has certainly added poignancy to N's birthday this year.
I commented to someone recently that you think of a month being nothing too much but the kids' birthdays and the gaps between that and their due dates always brings home to me exactly how big a stretch of time that really is.
N's birthday cake is nothing but photos, the cards are still sitting on the shelf but when they blow over I don't put them back up straight away any more, his birthday was 22 Jan - and he's still 7 days away from his due date.

A number of people we know have recently had babies and we're thrilled for them! It's a special and amazing miracle. One that so many take for granted.
I wish for them all that the 'normality' so many go into pregnancy and parenting, the blissful state continues unabated and undented.
I know I went into W's pregnancy like that and it is one of those things I think mothers especially, mourn after a premature birth - even if the baby comes out relatively unscathed, especially if you go on to have more children.
You know crap can happen and you no longer think it only happens to certain kinds of people. That blissful state no longer exists and you will never get it back.

So that's one kind of see-saw life has thrown at us lately.

Another is all N.

As those who have read this blog for a while know N has major eating issues. While I knew it was serious it still hurt when I saw, in print, in a paed's letter, the words food aversion.
We had got to the point, just before Christmas where the kids' surgeon had very very reluctantly agreed to put a g-tube in Nicholas so we could try to tackle the eat problems and get him off his Fortisip habit - now a 5 bottle a day habit.

The proposed date for surgery was today.

Obviously it's passed without surgery.
That light at the end of the tunnel has been snatched away - yet again.

What happened was the surgeon succeeded where the psych had failed and got a doctor who has extra experience in eating disorders to agree to see him.
He told me he'd managed that near miracle between Christmas and New Year.
And a week ago today he saw this doc for the first time.

I'm not going to go into huge detail here as we're still comprehending where we are at and are on a fact-finding mission at the moment, just as she is.
The next appointment in 2 weeks time when we fire all our detailed questions to her will be as interesting as discovering what she has found out about N and us.
But the almighty upshot is she thinks we won't crack this without admitting to the hospital for about 3 months.

This will mean handing him over completely to a large extent - not just health, development - mental and physical, but also educational because over those 3 months, assuming he makes the required progress and doesn't back track at all, he will be living in the hospital. He will come home for ever very slowly extending periods but will continue to sleep and essentially live in the hospital - coming home for meal and snack times and going back in between.

Quite apart from what this may do for/to N, this has profound impacts for the rest of the family - totally upsetting W and T's own education, T's own health needs, but also seriously disrupting P's ability to work. Never mind the costs of all the running around combined with lack of income now that P is self-employed and if he's not working he's not earning.

Our only real part to play in dealing with N's eating will be weekly team meetings, and chats if we happen to be there at the times the relevant staff are.

And so we will be asking searching questions to find out about the programme and how good a fit it is for N.
There are a couple of other options which we can explore before we go back to the surgical option but one of those I seriously doubt we'd manage to sort out and the other is a very long shot and more of the same anyway.

So, in the 3 weeks we have before we see this doc again we are throwing our all into one last ditch effort - we being P and I really.
N has started with good intend but this is hugely difficult for him and much bigger that him.
We are breaking all the rules I ever made.
I feel awful doing it but if we are to keep from major disruption and potentially, maybe curing N, but definitely doing damage to the family socially, emotionally and financially which will take years to recover from then we have to try.

And that is how I now find myself insisting a child stay at the table until he has finished his meal completely no matter what he throws (occasionally literally) at me.
I always swore I would never do this, that food is aversive enough but at least he's happy to sit with us, that you do not - EVER - do things to entrench the negative and feared aspects of food.
But this is the only thing that we haven't tried yet, and what, as far as I can gather, they would be doing in the hospital anyway.

We have extensive star charts - he can earn up to 2 stars just for drinking his Fortisip so unless something goes horribly wrong he shouldn't have a day where he gets nothing. If he collects a star for every meal and snack for that day he gets a $1 in a jar which he can see from the table as a continuing incentive.
The rules laid down for achieving a star are written out and put on the wall where he can see it at the table so he's not arguing with us - it's simply the rules.

On Tuesday we started this 'toughlove' approach - it didn't matter what he said or did, he was ignored but kept at the table.
At lunch, the start of this, he took 1 1/2 hours to eat 2/3 of a slice of bread and peanut butter.
When he finally finished I went down to P's office and he commented I looked shattered.

But that was a walk in the park compared to dinner - 2 hrs and 40 mins over 80g of nachos. Screaming, yelling, tears, threats to throw up - including retching and apparently throwing up into his mouth twice.
It was horrendous.
It was so difficult to remain calm, not scream at him - or give in.
But there is so much at stake here.

Wednesday he actually earnt $1 for the first time in a week.

P kept saying how excited he was, that this time we've really cracked it and it'll be different now. I was counselling caution - I've been burnt too many times by one day wonder N. He specialises in sustaining something for even as long as 2 weeks and then relapsing.

And so P was upset today - 30 mins to eat 20g of ricies for breakfast, 1 hour to eat 1 boiled egg and 1/4 of a slice of toast and 57 mins to eat 100g of pasta and sauce.
The only stickers earnt were for drinking a fortisip for morning and afternoon tea.

I know that when you are trying to change an undesirable behaviour kids will intensify before they decrease - they test your resolve, make sure you are serious.

The figures are decreasing but I can't hope yet.
We have 2 more weeks before we have to go back to this specialist so that's time to test Mr 2 week wonder and see how we are truly going.

But it breaks my heart to do this this way. It goes counter to everything I do in my parenting practice. To hand a box of tissues to your sobbing child but refuse to let them leave the table - it feels so wrong.

I wish there was a gentler way but he's had a year of psych help and only got worse.
This has to be gentler than surgery.
I just hope with all my heart I'm actually not entrenching behaviours, adding extra negative stimuli and actually making the whole issue infinitely worse.

I don't like 'breaking' a child. But if we don't solve this then his whole future is 'broken'.

So wish me strength, determination and a stronger will to fight than N's not to eat.

He is truly scared, he's scared when you talk about food, visibly anxious when you start asking what his problem is, this really is beyond his choice range.
I can only hope that by making not eating a more aversive situation than eating he will eat.
But I have been shocked - watching him I have seen he pockets food in his cheeks and then doesn't seem to remember how to move it round and control it with his tongue. I'm hoping someone can wave a magic wand on that front and either he'll remember by muscle memory or they'll find us a SLT specialising in eating.

My gut screams this isn't the way.
But as far as I can see this is what they would do in hospital - and they reckon they'd get him ready for a meal and snack at home after about 2 weeks in hospital.
And so I have another 2 to see if it'd actually work.
This is the only thing we HAVEN'T tried so far.
And still my gut screams no.
But, like dealing with child tantrums, if you cave in after a bit then next time you come to crack it it will only be harder still - so we must continue.

Please send me wishes this works, strength to continue - and resilience for both N and I that the collateral damage, of which there has already been some, won't significantly damage our relationship.
But most of all, hope with me that my pretty well tuned parental gut instinct is wrong this time!