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...

Does parental expertise get recognition by professionals?

Well, I wonder...

This wee musing has been sparked off by a combination of life events and discussions elsewhere in my universe.

 I was talking to someone recently who described a child well settled in good routines and the book the mother had used to help this along. I commented she was really lucky she had a child which actually came with a manual! Certainly none of mine ever followed ANY kind of child wrangling manual.
Then I was watching Super Nanny last night - something I rarely do as I wind up yelling at the tv and wishing they'd put together a programme of all the out-takes and the families who were rejected from the program because they were too hard...
Anyway - it struck me that there was obvious (this is a tv program after all) recognition of where the parents' skills were at, what caused them to get there and what the kids' histories and needs were - just a 'one-size-fits-all naughty chair approach'.

We've had some interesting discussions lately with N's psych about his eating and how to tackle it - she and W's therapist who has been helping were heading off on a track which we didn't feel was appropriate for the child, family or the actual issues in the situation, and so had to write a careful letter saying so and re-directing the track. We finished up the letter stressing the need for teamwork, that we need her psych training and skills but we need to combine it with our specialist knowledge of our particular flavour of child, their history and factors coming into play, and also our prior experience of having dealt with feeding problems for nearly 12 years over 3 kids, 2 of whom are now eaters.

She is happy to work with us and has dropped the path she was going down but still, there is no overt recognition that we've actually managed to 'fix' two kids ourselves and so actually know a thing or two about approaches to feeding issues. Of course, whether you actually count T as a success yet is probably a moot point as he is still using the tube to a significant degree and the results of a recent trial off were a spectacular flop - but it's a night and day experience with him now compared to even 6 months ago so we are making continual progress.

One of the things that the first psych did that really made an impression on me was telling us how well we'd managed with all the situations we've been thrown into. T's Speech therapist said the last time he was here that he never underestimates parental assessment and knowledge because the parents know the kid best.

I've had my ingenuity in problemsolving recognised from time to time by a professional but really it's usually a kids of 'All kids do...' from specialists and no acknowledgment when I say been there, done that, y happened not x. No one knows the true flavour of your kid like the parent, not even a teacher when they are off at school - because we see the tears, tantrums and stresses resulting from the school day that they don't - home is safe to do that, school isn't! The spelling test mark often doesn't show the true picture of the struggles to get there.

I knew the latest experiment with T was going to crash and burn but we did it anyway. I know from experience that you can starve any of my kids into eating and you have been able to. Apart from that T seems to have this weird situation where he has to eat a certain amount first otherwise he just can't/won't eat at all. Like if there isn't quite enough fuel in the engine then the whole engine seizes and stops. Just won't go any more. Not even for something so 'instinctive' as eating. The specialist's response was along the lines of 'you want him off the tube don't you?'

That response ignores not only past parental experience and knowledge of my flavour of child but also of the path we have travelled so far. Yes, absolutely we want him off the tube - so does he. But we have had such a long, hard and nerve shattering journey to get to this point that we are also happy to be guided by the child and take our time rather than rush, push, possibly create negatives which needn't have been there - and go back to the same old fight we've left behind - all to keep a specialist happy.
And again - you can't tell me that upping the emotional stress around food, going back to counting each bite and all that coaxing, encouraging and later yelling and drama doesn't cause problems - because W and N have been and are travelling that particular route.

People talk of a team of specialists and usually list several '-ologists' or '-ian' as part of that team. We have a team of a GP and a therapist of some branch for W.
We have a GP, paediatrician, dietician and psychologist for N.
We have a GP, paediatrician, dietician and Speech therapist for T.
Where are the parents in the list? What standing do they get given in all the considerations? What about their 'years' for training in this specific child?
When I do a contact list for one of the kids and list all the people involved in that kid's care and their contact details I always put OUR contact details at the top.
Parents get left out of the loop, their input and experience disregarded, yet when it really comes down to it - the doctors and specialists left, the kid ages out of their care, the specific problem is 'fixed' and the kid is discharged. Where is the line where the parent gets to sign off?
We carry the consequences for the child and for ourselves for ever. Our role is one that changes but the child never 'ages out' of our specialist care.

I regard myself as a professional mother.
That IS my job.
I have the skills, experience and ability to fulfill my part of the team.
Can the team let me in as a full professional too?

Just can't escape that treadmill...

Ah yes, it feels like a treadmill constantly running just too fast to be comfortable, that you are always just that little bit out of breath more than feels okay, and that you always feel like you just might trip suddenly and then it's all over rover.

Today was a typical example - N was a nightmare - among other things does anyone know how to get black felt tip pen out of towels and flannels? He's soaked a pen in water - 4 containers to be precise - and then got them all over the bathroom - all while actively not doing his schoolwork all morning. Trust me, this is something he's got down to a fine art - and is what will get him sent back to school one day, any old school, some days I feel like I just don't care any more, can't care any more.

He indulged in some antics today as well which literally reduced W to rocking in a corner and still had him so stressed this evening he was in tears.

So later today I drop various kids off to various destinations and take T to see the Wiggles live in concert (a children's entertainment group). I have just one kid with me, one who can sit still and behave and isn't freaked by the darkness, loud sound or proximity of lots of people - and I can pretend to be an ordinary mum doing a fun thing with her ordinary kid.
Such fun - and actually quite relaxing. He even complained of being hungry so I took him to McDonalds for some fries - and he ate the lot! So far so good - not even the eating bogeyman hanging over me!

But the treadmill starts again as soon as I get home. No more pretending normalacy, not from the second I walk in the door.


There are 2 messages on the answerphone - one from T's speech therapist setting up his next appointment, and one from W's therapist checking details about bringing in someone else who is doing work on emotion control. I check the emails and there's one from N's paed giving a list of blood tests she wants done.
Clean sweep - all three in one blow. Bang goes pretending a normal life.
Normality is a total sham, trick of lights and mirrors round here. People marvel when they are told of the kids' issues "Oh but they all look typical". That's credit to the kids' hard work - and my constant jogging on the treadmill, the one we can never seem to escape.

And then I pick up the Little Treasures Magazine (parenting mag here in NZ) and see there's an article on the stress of giving birth prematurely. It's as good as far as it goes, and goes into PTSD as well and the difference between that and PND. But then it totally blows it for me - the parents quoted have all 'recovered' and their kids are all fine. A grand old age of 3 yrs and another at 3 months.

We thought N was fine at 3 years too, W wasn't diagnosed with AS until 4. Problems with learning and higher congnative and executive function often don't show up until as late as 8.

When these problems hit, the whole seige hits again too. This is as relevant for parents of micro-prem and more severely prem babies as it is for the moderate to late prem kids. In someways it's worse for the moderate to late prem parents because we really are told to take them home and expect a normal baby - and when they aren't, and so often they aren't because of their prematurity - it is thrown back to us as our fault because they were prem or because you didn't see the warning signs and do something, or nurture them enough in the NICU - or no one listens to you when you do see the warning signs because 'nah, they are just a normal baby now.' Extremely prem parents had much bigger worries about keeping their child alive and over much more deeply engraved special needs. That extended roller coaster of the NICU sets you up for unimaginable fears and drives deeper into the PTSD grounds I'm sure.

But after having done 3 years of instantly responding to apnoea alarms and not feeding pump alarms - I'm a true pavlov dog too - at least the end of a feed doesn't trigger fear of death, that's true but the apnoeas sure do.

I also worry about what kind of a life W will lead and how truly independent it will actually be - having had to remind and re-teach him how to apply shampoo to his hair - aged nearly 12.
I don't even know if N's madcap ideas and impulse control free life will actually cut his life short - there have been a couple of close runs already in his 9 years.
I don't even know yet if T's amazing intellect will be freed enough by inteligible speech and how that's going to affect reading, writing and comprehension in the years to come. Today was a lovely example - a couple of the characters were performing in big plastic balls - he was wowed - and wanted to know if they had breathing holes in there and if there was a zip to get out. He also asked for confirmation that they were people in costumes - because dinosaurs are extinct, the octopus couldn't live outside water, and are there really dogs THAT big? But he also asked quietly in case the other kids thought they were real.

If people want to write about the stress of having a premature baby, they really need to follow it through with the on-going stresses of having a premature child. So many parents of 32 - 36 weekers in NZ will be looking at yet another article tonight and wondering why and where they have gone wrong because their child isn't 'normal' now.

Another day, another med...

Sums it up really.
N saw the paed yesterday due to his eating etc.
She's happy enough with the static weight - at least he hasn't lost anything - one of my least favourite phrases around!

I have, however, got a bit of an answer to one of my concerns - that he was on the 20th centile pre nissen and is now hanging, just to the 1st - 3rd for both height and weight. She says he's seen a number of kids do this and they do a rapid growth and catch up around the age of 10 and keep growing until 19 or so instead of the standard 17. Looking at W's recent and continuing metoric surge in height which started about a year ago, he'd fit that pattern.
BUT - you do have to put in the calories to do that growth with.

We discussed the possibility of going back to 4 high cal drinks a day but I really feel that'd be a backwards step. He'll never feel hungry enough to eat if he's filling up on 800mls of high cal formula a day. So we're staying on the 2 drinks a day and adding meds instead.

As he's taking for ever to kick infections, developing mouth ulcers which take for ever to heal, hair thinning and becoming brittle, she's put him on a multi vitamin to help with that. He will also start taking an old school antihistamine called Periactin. This isn't because of allergies but because it has a side effect of increasing appetite so we'll see if we can force him into eating. It may or may not work, there are other appetite inducing meds we can try but this one's been around for a large number of years so has a good safety profile.
It may work for a bit and then wear off - we'll just have to wait and see.

In my research on the med last night I did discover that it is going to be dropped from our drug funding schedule in September so even if it works we'll have to find a substitute by then.
I also took in his script for his high cal drink and it dawned on me last night that if the drug funding body does as it has announced it wants to do, then this will be his last script. They want to reduce the funding which will mean we can't afford it any more and they want to do that from 1 July. Each of N's scripts for it last for 3 month's worth so we're about to collect a March - April lot, then an April - May lot, then a May - June lot.
Then he's got to go onto a powdered version which I'll have to mix up and give him. We've tried that one before and I know he hates the taste of the re-constituted drink.
So one support will be kicked out then and then in 2 months after that the appetite stimulant will be unfunded too.

Going to be interesting times in the next 5 months...

And in the mean time I have a child on 5 separate prescription items - a pill for every season...