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.