The ephemeral nature of internet communities

Bear with me here as I wax philosophical for a moment.
Life can be hard when you are a square peg in a round hole.
Everyone needs to feel a sense of community, to feel connected, even at the risk of sounding corny - to have a place where everyone knows your name.

Everyone has moments, time periods in their lives when they don't fit where they expected to, where they feel isolated, a sense of no community - perhaps even when no one actually understands.

In reality no one CAN understand exactly what someone is going through, even if they have been through the same or a similar experience. No one has the same life experience, baggage, strengths, weaknesses to bring to bear on the situation and so no one handles the same life experiences in the same way.

But total isolation, not fitting anywhere, isn't good for someone. You can become too insular, too closed in on yourself, issues can rapidly appear insurmountable. An imperfect fit is better than no fit. That's where multiple groups can come in.

I'm part of an on-line community for those affected by prematurity, I'm part of an on-line community for parents of children with feeding difficulties, I'm part of the local homeschooling association. We have been part of a local support group for families affected by autistic spectrum disorders. And I'm part of an on-line community brought together by either health needs or parenting interests. This on-line community also has an interesting overlap in that those locally meet up in real life as well.

But all of these groups have pluses and minuses - ways in which you do but don't belong.

The prematurity groups are perennially affected by the 'preemier than thou' syndrome. It's controlled but always there. When you have late prem children then often it is hard to fit in, people feel 'it's not really premature, this is' etc.

The feeding difficulties group is interesting - things are well kept under wraps but there is a demarcation between those with tube fed kids and those who are not. I straddle both camps with N and T - although perhaps not for much longer. There is also the issue that both of these groups are largely US based - medications, interventions available, support, supplies are all very different. You can post frustrated that your child won't drink x formula and how on earth do you flavour the repulsive stuff and discover that the 2 formulas you have to choose from are part of around 6-8 options they have there and flavouring modules are easy to make it palatable - only New Zealand doesn't fund them any more so they simply aren't available. Sympathy is available but suggestions for medications, foods and therapies are not.

So we home school - immediately that makes a gulf between us and others. One of the stock questions any adult asks a child is - what school do you go to? That community of parents is no longer available.
The home school group organises events for home schooled children. But due to T's fatigue levels (needed afternoon naps until nearly 5) our participation was severely limited to almost non-existant. I had hoped that, after getting through the winter, we could take a larger part. However the group has mostly moved to events which carry costs, an afternoon when the boys have swimming - and T is no longer up to doing much at all.

The ASD group was very helpful in coming to grips with W's situation. Anyone who knows me I like to be able to help those I can with what we've learnt along our journey and so that was good too. But, a bit like the prematurity forums - life comes down to tin tacks and how affected your child is. P and I used to come out being intensely grateful that W is as good as he is. But that didn't help with the areas he - and so we - needed support in. Once we started home schooling he improved - and the vast majority of the time at the meetings was taken up with school issues which were now a non-event for us.

As P and I learnt as W's issues became more and more obvious - friends don't know how to cope with a child who clearly has issues, how to cope with worn and embattled parents, parents who have to focus on their child/children and constantly fight for what they need, spend hours researching, booked up with specialist appointments, limited in their socialising ability by their child's needs.

Those friends who do not yet have children often cannot comprehend this world and those who are coming up to having children are often subconsciously afraid, afraid to see what could go wrong, afraid that somehow they could have their chances contaminated by our bad luck. Friends often drift away.

P and I can count on one hand the friends who have stayed around despite the differences, the gulf of tiredness and child obstacles in the way to being there for others - socially as well as emotionally. It is hard to be there emotionally for others when you are constantly juggling intense demands for your own children - and let's face it - if you, as the parent aren't there for them then who is going to be?

And so our 'normal' friends, with 'normal' kids are few and far between. The 'normal parenting world' is behind a curtain somewhere. I can see it in a shadowy form, I get to use aspects of it in my daily life too but it's like a hazy mirror.

On-line groups, especially international ones are good for the embattled 'special needs parent'. There's always someone who can support the person in need so it's not always up to you, you can be there when you get the moment - regardless of the hour.
Some may say that that support isn't real, can't make a difference - but trust me, when it feels like you are the only one in the world to ever face this particular challenge - just having someone say 'Yes, I've heard of this, I've dealt with this or know someone who has', to have an email in your box saying 'Yep, you are right, that really does suck' really does help, give you a lift and make you realise that yes, you can and will keep on keeping on - even if it is two steps forwards, one step back.

My on-line 'normal' parents group was a life line. Because it was mostly on-line it had all the benefits of that and the real life meet ups gave a fairly safe place where aspects of the kids were understood because they were forewarned - but the kids could also just be kids.

So where do I fit? Where do I sit least uneasily? Where will be the fewest blisters and friction burns? Because, let's face it, no one gets on all the time and as email is a very blunt medium misunderstandings, disagreements and eventually fights inevitably break out.

Because you aren't speaking face to face people say things they wouldn't otherwise dream of saying, take implications that could not have been taken if you could see facial expressions, and because they are in written form you can come back to time and time again to be re-hurt, fester, cogitate over.

On-line groups also have the benefit and drawback of being easy to join and leave.

It's surprising how you come to depend on these groups in my situation - how these internet friends become your community, your support, your net.
Just as any parent - or person for that matter - have days when they just need somewhere to say they have had enough, they just want something to go right for once, to blow off some steam - so do I. However because I don't fit anywhere completely, comfortably - and because my options are limited, these groups become more significant. Precisely because you aren't face to face you open more, share more, feel like you are friends more - a bond.

And so when the inevitable happens in an on-line community and people fight, people leave it hurts - perhaps more intensely for those in my situation because it feels like a big door has shut, there's another aspect you are cut off from, just another group which exists that you don't fit into.

Sometimes, in an on-line community you get the major event, the implosion, you get a mass exodus - and you get left with a big sense of nothing left, of grieving although it feels silly to grieve for it. But it's another place you don't fit, you can't belong, where you are too different.

But maybe this is the nature of friendship today? What is friendship and how is it changing in today's world? It can't be unaffected by modern technology - everything else is after all! How many of us have people we barely connect to as friends on Facebook? If it really came to total crunch time how many of your 'friends' would stand up and be counted with and for you? Or how many have crossed your life path for varying lengths of time and moved on again but still we cling to that shell of momentary shared history?

For many people, this ephemeral nature of 'friendship', of community is easily managed, coped with. They have other opportunities and groups available to them. Perhaps when the group does the, all too frequently experienced, implosion, they are able to pick and choose who they maintain contacts with, with whom they can meet up.

For the 'special needs parent', the one with limited options, groups, time and energy this isn't so. The loss is bigger, magnified by the fact that it's not easily replaced.

As I said at the start - everyone needs a community, a place to belong, at the very least a place with the least friction burns.

Specific needs communities have their own drawbacks, internal competitions - and often the parents are embattled enough that they can't support anyone more at particular times as they are already paddling frantically to keep their own emotional boats afloat.

Normal needs communities have the major drawback that often you are speaking another language, you are an alien from another planet, the extent of what you manage on a day to day basis leaves them feeling like they have nothing they ought to complain about - losing them THEIR community and THEIR support base which they need too. You worry that your experiences, needs for support, simple venting are actually too much, too foreign, too needy in a normal world way for their group.

I have found, in my life, that while everyone needs somewhere to belong, when you straddle areas as I do, that it is a reality that groups come and go, your involvement waxes and wanes and that there are regular intervals in your life when it is simply you and your little bubble afloat on the ocean of day to day challenges and that right now you don't have anywhere to belong, nowhere is a fit.
You have to have the resources, strengths and experiences to draw on to keep on going and do it by yourself. And sometimes you have enough challenges on your plate that the loss of an imploding group is a grief and a challenge that stretches you to the max - one that maybe makes you realise the ephemeral nature of the friendships you thought you had, or at least wonder if the current attempts at community are worth it.

So long as you have some kind of fit somewhere, and keep reaching out at times when you do have the reserves - and recognise the fact that for some of us - you will never really, truly fit.

As the sand moves through the hourglass so are the Days of Our Lives

And so - where were we last?
W broke his arm and it healed - easy.
P's grandfather died - not so easy.
T saw the surgeon, GP multiple times and the dietician - not so easy.

GP's monitoring weight - T dropped 1 kg but has very slowly inched back up again but we're still playing around with fortnightly weigh ins.
Dietician decided T was best restricted to purees and soft foods only and to have his night feeds/formula intake increased back up to 1000ml/24 hrs. The vast majority of this is being tubed.
Surgeon decided he wanted a barium swallow done to see what's going on in there.

The barium swallow was a saga of epic proportions and one which was broken into two attempts - the first attempt went like this -
He was all happy and smiles until they laid him on the bed - then the screaming started and continued to the point of retching. Funny really they were all running for bowls etc but the kid can't puke...

I have not seen so much barium on the ...floor, in a kid's hair, all over their face, down their neck, soaking a gown since W's nerve shattering one aged 18 months. The older two were fine aged 5 and 6ish so I assumed T would be too. I guess he's had more medical intervention than the other two.

So they put some barium down his tube and checked out the fundoplication that way. The wrap is definitely intact. Absolutely no sign of reflux whatsoever despite screaming fit to burst so if there was any chance of reflux he would have done it.
So we have half the results - and it's the half I was confident about. You could have knocked me over with a feather if they'd found the wrap had undone or that he was refluxing again.

However all his symptoms are upper oesophgeal and so getting him to drink some barium was essential and that's when he really lost the plot - spitting it out even when they were holding his nose to make him swallow.
They only need about 5 good swallows but could we get it? No way!

So we waited for him to calm, got nowhere, and then discussed possibilities.
The radiographer said that either - we get Mr B to scope him - which he has said he doesn't want to do (although I can see that coming as the next step anyway), we come back in 3-4 weeks, or they put down an ng tube and get the barium down that way.

T would have TOTALLY freaked and been horribly traumatised if we had to ng tube him - anything in his nose sends him off the deep end - it obviously brings back memories of his ng feeds as a baby. Honestly I'm not sure I could keep it together watching them do it either as having to put the tube down him at home was one of the worst things I have EVER had to do to my kids and something I actually still have nightmares about periodically.

I explained about how he's really struggling to eat, lost weight, doing 10 hours of feeds overnight and that I really didn't feel he could wait another month and then 2 weeks beyond that to see Mr B and then waiting to fix whatever.

So she checked it out and found she has a slot next Friday at 9am when we can give it another go - and results will be back in time for our 6 Sept appt. We have agreed that if he won't drink next time then we will have to do the ng tube option.

And so we returned the following Friday and it went like this -

Got there, all fine and dandy, even hopped on the table fine - then they produced the barium and the screaming started again.
Bright red face, screaming, shaking with fear etc - and nothing drunk - spitting it out left right and centre.

So then it was all on. She gave us 3 choices - get everyone involved to hold him down to put the ng tube down - not fun at all and unlikely to work, wrap him in a big sheet firmly, hold him down and try to get it down him - again problematic esp as they know from last week that he's actually very strong. Or use a contraption she'd designed to pin him down while they put the tube down, add the barium and take the pics. She warned us it looked like a torture instrument but assured us that it would be certain to be quick this way and he wouldn't be able to move at all.

So you opt for the most successful option when nothing's going to be nice anyway - don't you?

She pulled out this thing - a plank of wood with 2 plastic rings - one at the head and one at the foot.
Then produced various velcro and fabric straps, a towel to pad the plank etc.

T kept screaming and clinging to me all the way through this and wouldn't calm at all despite my efforts to get him to look away or distract him. So I placed him on the plank and the fight was all on again.

They strapped his legs from the ankles to almost top of his thighs to the plank - he kept pulling it off in the fight so they wound up tying knots in the velcro and in the end his bottom half looked like a mummy. They then got more velcro straps and tied his arms above his head to the ring around his head. Again they had to knot it really firmly as he kept wriggling loose. He's got nasty red marks on his arms from where the ring was digging into his arms. It still took 3 people to hold him down despite this.
She shovelled the ng down - he was screaming all the time - and sort of gurgling and choking as she put it down.

He continued to scream all the time she put the barium down and took the pictures - struggling, shuddering and fighting all the way.

She says they got a few good pictures - and there appears to be nothing wrong.

So in effect we did this to T for nothing.

We still have no answers - no blockage, wrap in the right place and functioning etc.

I'm devastated needless to say.
It doesn't explain a sodding thing and why the kid's in pain, makes glooping noises, can't eat much and says food gets stuck on the way down.

I'm hoping that, since they had to put the ng down - and it appeared a fair way down his chest (being able to see the ribs helps) that maybe they missed a blockage higher up - he complains of pain higher in his chest. Maybe if it's only a very slight blockage - which explains the lack of regurgitation, that all the screaming forced things past? The ng was very very thin - looked like the gauge they used on him when he was 3 months old.

Maybe it is an allergic oesophagitis thing - in which case a scope and biopsy again will tell us that.
I'm sure a scope would give more detailed info - Mr B can look at the tissues, see colour, health, any changes, see in much more detail than simply shadows on a screen with a child screaming his lungs out. Biopsies may give more info too.

So now we have to persuade Mr B into it and further investigations. SOMETHING is not RIGHT.
He looked sore yesterday and I asked if he was okay - he said he was sore but it was okay - it was ordinary sore not really sore.
He can't and shouldn't have to live with that.
He has to be able to eat.

If I have to accept that oral feeding is for fun only and he is going to be permanently tube dependent I can and will but NOT until after every possibility, however remote has been checked first. This kid WANTS to eat but it hurts and we have to find out why.

Since then I've had an informal conversation with the surgeon, we ran into each other, and he has said that if there was nothing obvious on the barium pictures then he would scope T. He did say that they would get to the bottom of the problem for us.

We see the surgeon on the 6th so hopefully I'll have a date for the scope to report back then.

In the meantime I have a T who, rather than being a train full of steam, keeps running out of puff. He rests regularly throughout the day and today was complaining of enough pain that he wanted pain relief - as well as to go and see Mr B right now so he could stop him hurting.
The newest development is that he was retching and saying he felt like being sick this morning - whether it was pain related or something gastro-intestinal I don't know.

And so we get sucked back down into the medical quagmire which seems to swirl round us, sometimes loosening it's grip but never letting us escape completely.

Never rains but it pours

This one's hard, really hard.
I'm actually really really annoyed, angry, sad, devastated - take your pick.
I think I've found the feeling of heart sick.

We've run into problems with T.

Again.
It's not fair and I just want to go around and kick things.
Hasn't the kid been through enough already?

Cosmic karma/chaos whatever - go pick on someone else and their family.

T has been finding it more and more difficult to eat - complaining of the sensation of food getting stuck - 'traffic jams' he calls it.
It was a patchy problem at first but become more and more frequent and he's been reducing what he's prepared to eat and how much he's prepared to eat.

He'd been making good progress and we had him down to around 450mls feed overnight, increasing his range of foods and quantity.
Now if he eats much at all then he's hiccupping, complaining of 'traffic jams' and burping.
So he's just not eating much and only soft foods now.

I took him back to the GP who said he definitely needs to go back to the surgeon.
So we're doing that on Tuesday - and I'll update after that.
The guesses are it's a motility issue or a stricture of some kind.

I'll review his early barium swallow results but from my reading a motility problem would also result in constipation, pain later after meals and more pain on sleeping with a full tummy.
He'd also be complaining after all foods not just hard ones.

A stricture could be either scarring as he healed from his reflux which wasn't such a problem as he used to eat fibre by fibre and in small amounts.
Now he's eating in bigger bites and larger quantities it can't squeeze down the space in his oesophagus, or what could be happening is a problem with the new valve between the oesophagus and tummy - formed by the fundoplication. It has to relax to let the food through and if it doesn't, or not for very long or until there's enough weight of food on it then you'll get the backing up problem.

From my reading a stricture or the achalasia (the valve issue) cause problems with hard foods or chewy foods but not soft foods until the problem is well advanced, and no problems with liquids - pretty much what T is doing. It also causes problems of feeling full after only a few bites - like he is complaining of (rather than part way through a meal and tummy pain later - the motility issues and not what he's doing).
The other hint is that he's not complaining of tummy pain but high chest, bottom of throat pain - which would tally with a stricture.

So I'm sure the surgeon will need testing done - certainly a barium swallow and study and quite possibly another gastroscopy. A stricture and achalasia can both be treated surgically quite effectively and simply. A motility issue now would mean life long meds with the potential for it to worsen - or improve.

Either way this has put us a long way off decreasing tube feeds, getting his eating well on track and saying goodbye to the pump and all the interventions.
As he's eating so little we've had to increase his feeds again - giving 700mls over the past two nights which in turn means very late nights for me waiting to turn off the pump so back to all that treadmill.
It's like we've suddenly shot back to at least January if not to last year.

I've always said I don't go backwards - look backwards to see where we've come from and learn from this yes, but actually go into reverse? No way!
I guess this, plus N now being back on 4 Fortisips a day as we're going nowhere with his eating either is to totally prove me wrong.

And to add to the totally snowed under feeling P's grandfather was involved in a serious accident this week and is essentially paralysed totally - some minimal movement in hands and feet but that's about it. He's in the specialised Spinal Unit and awaiting surgery on Friday but he's 90 so it's not going to be easy.

So there we have it - never rains but it pours and right now it feels like it's the middle of a thunderstorm!

12 Years On - what the kids have taught me!

Today is the day 12 years ago that I started this magical, amazing, exhausting, invigorating and all over mind-blowing adventure we call parenting.

I got catapulted into in with an absolute shattering of what my dreams and ideals of what my first child’s birth day would be like.

Not a gentle nudge, “Honey it’s time”, not quiet cuddles and a getting to know you time as a family with a newborn.

No – not for me – it was a full blown, bells and whistles high tech birth, emergency calls, emergency caesarean, baby whisked away as soon as it could be.

Such a high tech and modern birth P only made it thanks to someone in his choir having a cell phone in 1998, thanks to the unknown person who volunteered to be bumped off a plane so he could take their seat and fly back – W’s birth notice includes thanks to the airline!


But over the past 12 years I have learnt so much, grown and developed skills I’m sure I’d never have otherwise and learnt to look at life and appreciate life from a whole different angle.


I have learnt a whole new language and alphabetic acronyms – and how to exist in a whole parallel world of first the NICU and all the medical bits and then the world of children with special needs, therapists and so on.


I have developed my mathematical skills well beyond any of mine (or my teachers’ expectations!) going from working out timing of 4 hourly feeds on my fingers to now calculating mg per kg medication dosages, converting it to how many mls of the particular strength and when checking my figures with a GP discovering the only error was HIS.


I have learnt patience to a whole new level – from waiting 4 months to see W’s first smile, to waiting 4 years to finally hear T belly laugh after finally being free from reflux pain.


I have learnt persistence – from wearing out a pair of jeans teaching W how to co-ordinate himself sufficiently to learn to crawl to teaching N not to stand on and jump from the kitchen bench – timeout up to 20 times a day for well over a month!


I have learnt the value of time – from the lifetime that seems to pass in seconds as W’s apnoea monitor alarms again and you gently re-stimulate his breathing hoping and praying that you won’t have to put your CPR theory to a practical test to the trying to carve out time for each kid in a busy day filled with appointments, housework, therapies which need to be done and supposedly also doing paid work.


I have learnt comprehensive organisational skills – from organising and keeping up to date medical files on all the kids, keeping all scripts and repeats up to date, to making sure we don’t run out of coffee!


I have learnt how to write concise medical summaries for a doctor or specialist that will get across the journey so far, in a format they can absorb quickly but won’t put anyone’s back up.

I have also learnt that doctors, far from being gods, can make mistakes like anyone else and need to be pulled up on that occasionally – or fired from my child’s team of which I am the leader.


I have learnt to admire the face of courage in the many forms my children have shown me – from the on-going, everyday pain caused by severe reflux suffered relatively uncomplainingly by all of them, to simply continuing every day knowing they will be confronted with tasks they struggle with but doing it anyway – be it understanding a demanding and exhausting world for W, struggling to focus and concentrate on less than attention grabbing tasks for N, to developing language skills for T. They have persisted, courageously, to achieve what others may do without thinking.


While the children have struggled greatly in many areas it is a privilege to watch them change, develop and fight to grow. I will never take the smallest achievement for granted again – be it W finally figuring out how to co-ordinate the ‘suck, swallow, breathe’ routine for feeding aged around 10 days old, those first staggery steps from both W and N when N was so far behind at 10 months old that he was assessed at a 3 month level, to T figuring out how to sign for sweets and immediately doing it with two fingers to indicate he wanted more than one sweet!


I won’t complain about children moaning about being hungry – the words “Mummy, I’m hungry, I need food” from a 4 ½ year old T were magic indeed.

The joy of the family seated round the table all happily eating and completing their meals without dramas is not yet something I’ve been blessed with but I still plan for that in our future.


These are just some of the many skills and experiences which my children have given me on this journey of motherhood.

I can’t say I haven’t shed tears – and not just ones of pride.

I can’t say I haven’t ever lost my patience, been extremely frustrated and angry – or wondered why me and why all the kids.

I can’t say they have achieved all I’ve set out for them and I will continue to steer, direct, guide and ensure they get whatever services and help they need to get them to achieve to the absolute best of their abilities for as long as I can.

There are definitely times where the “Welcome To Holland” outlook is much more a “Welcome To Beirut” outlook.

But I have also learnt to treasure those rare, quiet, peaceful oases where no one is in crisis mode, we are not in the build up to some fight for therapies or trying to push a doctor along, and in fact things are ticking over and everyone is healthy.


These are just a few of the things my children have taught me over the past 12 years.

When is the light at the end of the tunnel supposed to appear?

Yup, feels like a never-ending tunnel of gloom right now.

I posted on N and his eating recently and how we aren't getting anywhere and he desperately needs the nutrition.
We got the letter from the paed yesterday and for the first time it has it in print - food aversion and Nicholas.
There is was, black and white.

I know that's what we're fighting against, I've known it really for some time. But it's different when it's stated in print by a professional. When it's not just spoken of as a possibility but as a firm diagnosis.
It makes it real.
It blows away the forlorn thought whispering in the back of your head that maybe, really this is just a phase, if I do this or that he'll just snap out of it.
Nope - it's the real deal, the big black monster pushing you against the wall and the war is on - who is going to win the kid - you or the monster?

It means it's going to be a long battle, a hard battle - and that this feeding nightmare which started nearly 12 years ago when W was first learning to feed and then reflux derailed everything - is not going to end any time soon. It is and will stretch out for years ahead of us.

Why and how did we get into this mess - again? What could I have done or should have done differently? Was the surgery a bad idea since the eating mess was kicked off post op?

I don't know.

I don't believe the surgery was a bad idea. I suspect if he'd continued refluxing and vomiting we'd have wound up in this precise spot anyway. So that's one never-ending question answered.

I think the one thing which I could have done which might have changed the outcome was the lack of medical backup post op as the eating difficulties emerged.
The surgeon saw him about 4 times post op because of the eating issue but there wasn't much he could do except saying go back to the GP. GP was a locum and leaving shortly and really simply didn't want to know.
I was left in the cold with a kid who was starving himself.
If I could jump back in time I'd do the surgery with him under a paed - someone to take an overview. The only person who had the overview was me and no one was listening.

N WAS eating well before his surgery - but only had about a 3 year history of eating well and considering he was 6 1/2 that not much of his life span.

So under pressure and in pain he reverted to former eating patterns. They worked for him before so it made sense for him. Self preservation instinct and all that.
But now we have a nearly 3 year history of further eating problems.
At nearly 9 1/2 he has only 3 years experience of eating suitable amounts for good health and growth.

We have to re-train all that experience and change all those habits and thoughts, as well as get his body used to actually having a larger amount of food in his tummy without negative responses like feeling sick or hurting.

And in the meantime we have a nearly 9 1/2 year old who is formula dependant - and with a food aversion.

I don't expect the kids to be raging foodies - although that'd be lovely - but I do need them to be able to be trusted to eat enough to thrive. What's it going to be like as a teenager or early univ student? What if he winds up living away from home? Who's going to make him eat, watch the patterns, make sure he's not slipping backwards?
He has to get this sorted and new behaviours entrenched before then.
I'd like meals to not be a succession of reminders to eat and failed, rejected meals.

Actually I'd love it if just for once both N and T actually finished a meal - the same meal at the same sitting! I've never had that - ever.

And the brutal reality of what we're facing comes close on the heels of doing paperwork for T. Once again FTT holds top billing for him.
I had so hoped, wished, dreamed that he'd have lost that by now.
When I objected on the grounds that FTT is weight, growth or both below either the 3rd or 5th centile - AND HE'S NOT!! - the doctor pointed out that without his tube he would be so technically he still is FTT.

I'm sure parenting wasn't meant to be this hard. There's supposed to be a warm rosy glow around family meals - healthy food, happy talk and togetherness. Families bonding, coming together, celebrating. From the happy baby glugging away at bottle or breast, to the food play of beginning solids - it's all about growth, nurturing and love. Successful parenting.

I ponder this as I mix formula for my 9 year old, wash syringes and attach and detach tubing from a plastic tube implanted in my 5 year old's stomach.

And so the food war rages onwards, getting deeper into the trenches and mud.

And a general update!

Well, it’s freezing cold outside, pouring with rain for the 5th straight day, the boys are eating lunch and I’ve been thinking over this update for quite some time!
So time to actually write it!

We’re in that birthday season run – T is now 5 and so started home school! That decision was made easily – in part because the local school aren’t very good, in part because he’s still working with his eating – and still has feeding tube in his tummy, in part because we’re still discovering new aspects to his food allergies but majorly because if he went to school he’d join the waiting list for the minimal in school speech therapy service whereas he could continue with his current therapist who comes to us once a week until he’s 6 when he has to be handed to the school service!
No brainer really!


As it turns out, they have just done a speech assessment and he seems to be within parameters for functional speech and so will probably finish speech therapy in about 10 weeks time. He actually isn’t anywhere near as understandable or as proficient as the older two were at the same age but they are only funded to achieve functional speech not to bring him up to potential. Very infuriating but you can’t fight the funding format – and I’ve already fought and won to keep him in speech therapy once.

In terms of his eating T is making some real progress. He’s actually eating more than N – not difficult as you’ll see further down.

He’s now 103cm and 16 kg – 16 months ago before his surgery he was only 11.5kg. This time last year he was getting a total of 900mls of formula over a 24 hour period but he’s now getting 650mls – of which he’s drinking around 200mls a day. So we’re heading in the right direction to getting rid of the tube and pump. Overnight feeds are nowhere near as tiring as they were since he’s also tolerated a gradual increase in flow rate – now up to a whopping 130ml/hr! These increases have had the benefit of making his tummy more comfortable with larger volumes in it which makes it easier to eat larger meals. So every month he gains I weight I decrease his feed – keep it the same if he hasn’t gained so I know that any gains he’s making are under his own steam.

Healthwise he’s doing well with loads of energy and vigour for getting into and out of the usual kid scrapes. His allergies are still being untangled with the development of eczema this year and trying to track down what sets that off. So far he clearly reacts to dairy products, soy, strawberries and apples! The strawberry reaction was quite rapid and a bit concerning when he was last exposed as it was only eating off a plate that had had strawberries on it and he rapidly came out in an itchy rash all over. So we won’t be doing THAT again!

He’s happy, cheerful, cheeky and fun, learning the alphabet and rote counting, and still into Wot-wots, Thomas the Tank Engine, Chuggington, puzzles and ‘reading’ books.

N – nearly 9 and a half – keeps us on our toes as usual. The biggest and longest standing concern is his eating – he eats very little, tries to avoid eating to the extent of moving things round his plate to make it look like he’s eaten and more recently throwing and flushing away food and claiming he’s eaten it.

The paediatrician tried him totally off his high cal drinks (of which he’d been getting 4 a day) in October last year to try and freeze him into eating. Playing chicken with this kid is NOT a good idea because he lost 1.4kg in 10 days before he started eating fractionally more food. The paed blinked first and she put him back on two drinks a day.

Since then he hasn’t gained really or grown at all in the past 7-8 months (21kg and 120cm) and he is now being followed by a dietician and a psychologist. We got involved with the psych initially as an adjunct to help for W with Asperger’s related issues but she is now focussing entirely on N’s eating instead of ADHD issues.

The psychologist’s opinion, formed after around 6 weeks of working with him, is that N has absolutely no internal motivation to eat and our attempts at external motivation has pretty much failed because one of the joys of ADHD is you live in the moment. Oh, I can’t have that reward? Oh well, I’ll find something else then.

So we saw the paed again this week who has said he has to grow and we have to do something to preserve his health. So she has put him back onto 4 drinks a day. This means that although he’s getting 1200 cal a day – good for growing, he is having to consume 800mls of thick liquid a day. Just over this week we’ve seen his solid intake plummet to virtually nothing which is heartbreaking. On the other hand he’s happier, concentrating, being creative again, doing his schoolwork better and much less impulsive. Amazing what extra calories can do!

Other than his eating, things are going well for N. He’s enjoying his guitar lessons and apparently there will be a little recital in a few months time that he will take part in! It’s very hard to sum up N's interests in the way I have for T because he is into anything and everything going – anything is worth a try! Could make for interesting teenage years…


W – is just about to turn 12! He’s shooting up – I had to measure him for his passport recently and he was 160cm then. He’s wearing a 14-16 yr old size now. He has simply gone from strength to strength after his surgery last year – we’re just about at the 6 month point and the longest ever that we have gone without someone on reflux medication in 12 yrs! He’s growing into a young man I am extremely proud to call my son – and often class as a gentle smart alec.

He came back this week from a 4 day trip with my parents to Melbourne in Australia as an early birthday present and was able to attend the All Whites v Socceroos soccer game while there. His birthday is 14 June so not long away now.

He’s doing very well with his piano and will sit Trinity College Grade 1 in Sept. His teacher had thought about leaving it until November but believes he will be ready by Sept instead. Not bad for a kid who was still in OT aged 4 because he seems to have a very mild form of CP – arm tucked right up when he was much younger and took years of therapy to get it uncurled and functional!

Life continues on as usual for P and I – he with lots of singing and trips away scattered through and me with the kids, homeschool and all their extraneous appointment – there’s always at least one once a week and usually two.
So that's us really!
Til next time!

Life Mountain!

Things just keep piling up here and I wonder when we will ever reach the summit of it all - then we can look forward to the slide down the other side to that wonderful utopia called 'easy life'.

N's eating has gone from bad to worse after an appointment with a dietician. She's approached it from the viewpoint of medication affecting his eating and added a supper to our food battle ground.
And so now the war rages onwards 6 times a day.

We tried the supper idea for a while but the end result was a sharp escalation in N's food avoidance behaviour - he resorted to throwing supper out in the toilet, covering it with paper and lying vehemently that he had in fact eaten. So we had to amp it up by only allowing him to eat supervised - end result - me nagging him to eat for over 4 hours a day every day. Not increased intake, just increased stress.

We were talking to his psychologist today who is of the opinion that N has absolutely no internal motivation to eat and external motivation is extremely hard to create. We will continue with a behavioural approach but there is not much hope for any dramatic kind of change. So it'll be back to the paed to see what she says medically. We're pretty much going to have to try a fairly heavy duty medication for epilepsy to see if we can generate a side effect of increased appetite but the big question at that point is how far the behaviour has become entrenched that he just won't respond to the signals.

If he doesn't I guess we simply have to push for the surgical approach and we'll have two on tubes.
I don't want to go there, the sense of failure is huge. But we also can't stand by and watch this happen to N. He's got too much to offer to let him throw it away. We also have to find an end to this incredible stress.

Speaking of stress - one really nice thing which has happened recently is my getting accepted into a trial program for the Aveeno products. I've recently been trialing 2 products and the really stand out one for me has been their Stress Relief Moisturiser - nice stuff and really helping through some of this nonsense with N!
It also makes a difference to W and his stress levels - and the scent and well as texture have to be just right for him to tolerate it so that's a big positive!!