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!!

Oh Baby - watch him grow!

So T is now 5!
He was born at 36 weeks gestation - exactly 36 weeks - and 5lb 11 oz or 2.580kg.

As of his height and weight check on Friday (actual birthday on Thurs) he was 102cm and 15kg.
In the past year since his surgery his speech and development have come on so far it's been an incredible journey and one which would never have happened if he hadn't had the surgery and the tube placed.
He's blossoming and flourishing now.
He excitedly tells you what we're having for dinner, he hassles his grandmother to bring back chippies on a Friday after swimming and he clearly enjoys his food.

He's not eating enough yet to achieve his 'holy grail' - a "Bye Bye Purple Pump Party" or a "I can now eat enough to grow and thrive all on my own" party. But we're walking in the right direction.
He did lose this month (500g) after about 3 months of consistent 500g gains but that in part was due to trialing him on reduced feeds and also because I split my focus too heavily in N's direction with his eating.

Last night W was asking me questions about his birth, things he hadn't asked before - what did we think, what did we worry about, and what was he like in the NICU. So I was going through his photo album with him but also read him snippets from the journal I kept during that time. Lovely, special but emotional.
I was reading him bits of emails I'd printed and saved from his first year and was actually horrified as I read the ups and downs of his weight and the battles we had. Doctors saying he had to be a certain weight by a certain time but never really following through with helping us get there, the hours and efforts I spent to feed him and the elation of weight gains and the despair of losses.

That was nearly 12 years ago. The more time goes on the more things stay the same.
We may have the same agony and esctacy - it's just different doctors and a different child. We still have the same responses from the docs though.
No wonder I'm tired - and tired of it all.

Technological challenges!

I'm hoping I've done this correctly and that my blog has transferred properly!

Got to love that technology...