As the years roll by...

Yes, I know I said there were a number of things I wanted to post about - and then never got back to it!
January is a busy time in this household - I turned mmmfffht recently, we have our wedding anniversary and N a birthday too. That's in amongst various other family dates in Jan, catching up with friends and then before you know it I've realised it's almost 'Back To School' time and I haven't even started lesson planning!

But today is a good one - it's our 16th wedding anniversary.
We were engaged for two years while I finished studying and went out for 2 years before we got engaged so all up we've been together for 20 years. I've now reached the tipping point where I've actually spent more of my life with P than without him.

There have been a few people who have said - who wished the other a Happy Anniversary first, who dropped the ball, oohh better have a good evening planned to make up etc.
In actual fact it was a mutual "Happy Anniversary" around 2:30am this morning as we dealt with a petrified T who thought he'd seen lightning!

P gets up before me so he got to FaceBook first - he also braved the severe weather warnings and went out to get some nice muffins for breakfast. I've got a nice dinner planned.

But, it doesn't matter who wishes who a Happy Anniversary first, what we have planned or how we mark it to a certain extent. We often look back on the anniversary we spent in the children's ward with W who had managed to open a bottle and take some of my arthritis meds. How he did it I still don't know because he was 18 months old and by age 4 he was still learning how to open screw top bottles in OT!

Instead of a nice dinner, maybe some wine and a relaxed evening together we wound up eating fish and chips and watching our kid closely in a hospital cot. He went home and I stayed in with W. Then when we got home he took over and I got a rest.

And that's how we work.
It's not a competition - who does something first, remembers the best, provides the best present (although not galvanizing the kids to make me a birthday card this year was a disappointment I have to admit!).
We work as a team.
We back each other up. Often the division seems arbitrary and traditional - I do the house and kid stuff and he earns the money, he worries about the business and I do the health research.

But we keep each other informed, we make decisions together. Usually emails/letters to doctors are written together. When dealing with screaming refluxing babies we tag-teamed - one taking one feed and the 4 hour stint on the couch while the other slept and then switching over.
When trying to ignore the kids' difficult eating as small children we'd tag-team, recognising when it was driving the other to distraction and letting them just leave the room while the other stayed - cool, calm and collected.
When one kid is blowing a gasket we will tag-team dealing with the tantrum and ensuing calm down period.
The team work is such that the kids have never managed to play one off against the other - no mean feat over 3 kids and 13.5 years!
Sadly - these days we can anticipate each others' response to a kid's request and we will often reply in exactly the same words at exactly the same time!

Over the 20 years we have grown and worked together as a team more and more deeply. We regard ourselves as a team and I'm sure that's why things have worked so well despite the curve balls thrown at us along the way.

Communication has been and is the vital key for us - even if we do sometimes resort to sending each other emails despite P working from home!

Even from early on we had some battles to come to grips with - my arthritis diagnosis 3 months into the marriage, the conflicts thrown at us by our differing churches - but we've worked together, talked together, celebrated and cried together.

The stats for marriage break-up in Special Needs families are incredibly high, as are those for families touched by prematurity. Combine the two and you get a rate of around 75 - 80%. Rates for families with an ADHD kids are also high as they are so high maintenance and draining. Much of that comes from one of the partnership being left to do most of the work - or the flip side - one partner being left out of the picture.
P might not be able to remember the kids' birthdates but he can clean a gastrostomy tube, hook T up to a feed, remember which meds belong to which child (without checking the label to cheat! but he knows to check too). He knows the names of the specialists and comes to the appointments.

Yes, we've had our moments, times when things haven't worked, our fights (although few and far between) but those have been pushed through because of our well established communication. There are no taboo subjects although plenty of 'in jokes'.

We are a team, a unit and together our skills complement each other.
It's hard work but good work.
I'm so grateful to be walking this road with P beside me - it'd be incredibly hard otherwise!
I'm actually grateful for the skills and benefits we've gained through necessity too - because they give other benefits to us as a couple.
Together, as a couple, we can conquer anything!

So - the past 20 years have been a roller-coaster but one I wouldn't have missed for the world - so roll on the next 20!

From the ridiculous to the sublime!

There has actually been a lot happening lately and I've written this post many times over in my head already!

I had intended to blog about our latest achievement individually - and so much has happened which has superseded it in many way but I think W's latest achievement does deserve space all of it's own and so I will simply write posts over a few days instead :-)

W learns the piano. He has done for about 4 years now. He enjoys it and finds it very relaxing and, like many things in his life - he's very single-minded about it, often practicing 3 times a day.
I do wonder if part of this impressive practice schedule is also an escape thing - the sound of the piano, in a quiet corner of downstairs, cancels out the ructions of N and T!

W recently sat his Grade 1 Trinity Hall piano exam (having done preliminary Grade last year) and so we were expecting his results a bit before Christmas.

He did very well last year - getting a Merit award with 86%. This was exceptional considering he was really sick that day - he got out of bed to go to the exam and went straight back to bed as soon as he got home! Added to that he'd only been out of plaster for about 3 weeks having broken his arm at his birthday party earlier.
So I'd quietly wondered how he'd done if so much hadn't been against him that day while celebrating his magnificent result!

This year he announced he was going to get a Distinction pass as he'd already got a Merit.
Okay - good to have aims and I knew he'd do the work but wondered how he'd do and what would happen if he didn't get that result.

He suddenly stopped practicing anywhere near so much in the few weeks before the exam and I got a little concerned. His view was he had the pieces perfectly and so once a day/every few days was all he needed.
So I talked to his teacher, figuring that she'd know where he was actually at and maybe I was fretting for naught. Her advice was that, yes, his set pieces and scales etc were great but that he could just play through old books to work on sight reading. So I passed this on to W - who disregarded the advice as children do. He knew his pieces were fine and he was going to get a Distinction - okaaayyy.

The day came to sit the exam and W went silent and sweaty and whitish. I'd have worried except I know that's his 'I'm petrified' thing and actually the best thing to do is leave him alone so he and I travelled in with the radio on for mild distraction and to stop my urge to talk, reassure and sympathise.

He came out from the exam and I knew from the way he was moving something was wrong.
My heart plummeted - I knew I should have got on him to practice more, knew I should have tried to mitigate his aims and maybe set his target lower, should have been more supportive.

He was devastated, convinced he'd totally thrown the exam. He said his fingers had slipped on some keys and run a few notes together in one of his set pieces, didn't think he'd done well in another and had panicked during another set piece and struggled to keep himself under control because the examiner had told him off for not waiting for her to say go because she did exactly what she had at the start of the first piece so he thought she'd meant start. He was also convinced he had totally messed up all the sight reading.

All the way home he conducted a grim post mortem of all his possible errors, speculating on his potential marks and telling me how hopeless it all was. I kept telling him the time for a post mortem was when you had the report in your hand, there was nothing which could be done now and to try and put it out of his head until he knew how it had really gone.
He was miserable for 3 or 4 days and barely touched the piano.
He slowly worked his way out of his funk and thankfully he didn't have too long to wait to get his results.

The day they were due I briefly contemplated commenting that this was results day - and decided not to!
Then that morning the phone rang - it was his teacher who couldn't wait until his lesson that day to give him his results which had just arrived in that morning's mail.

W had got 95% and achieved a High Distinction pass grade!
He got full marks on all 3 of his set pieces and only lost 1 mark for scales and 4 marks on the sight reading - which he had clearly struggled with as per his gloomy immediately post exam report - but only struggled a little.

Sheer joy beamed from W's face - not something we see that often!
So excited he jumped in the air and kept dancing around - and then ran downstairs to tell his father.
A huge beam was over his face all the rest of the day and well into the next - as it was for all of us.

This is a fantastic achievement for any child - and as W pointed out, to improve his marks by 9 again next year he will need to get 104% - a little difficult I think my dear!

After his lesson we stopped off at the supermarket and bought items for a special celebration dinner to mark his wonderful result.

A couple of days later he and I were chatting and he brought up some concerns about muscle weakness and pain on his right side - arm and leg. I was explaining to him that it's something to watch and be aware of but not unexpected due to his very mild right sided probable CP. I reminded him of all the stretching and exercise we had to do for him when he was little and how he barely used his right arm aged 2 1/2 but kept it curled up to his chest. He talked about what he remembered of the physio and OT sessions he had for over 2 years and I told him he was still learning how to use that hand better in OT aged 4 years.
His comment then was to express his own surprise at how well he can play the piano now then.

That's right sweetheart - it's hard work that's got you there, first off mostly ours but later mostly and then all yours.

And that's why the grin of pride in his success is all the brighter. 95% is fantastic for any kid but for W it is simply awesome - in the full sense of the word!

You put your child in, you put your child out...

Yup, all I can think of how we are expected to dance with our kids' futures, education and health.

It seems to be a total hokey tokey dance with the education system here in NZ.
Policy, disability rights, actual needs, schools, options within the system and internal procedure seems to entwine itself into a never ending and contradicting maze.

We 'fell into' homeschooling by necessity.

W's needs were such he was probably clinically depressed and certainly seriously contemplating suicide as an 8 year old because of the stresses and difficulties of coping in a mainstream school without supports - supports we had requested and the school had declined to supply - or even use supports we supplied ourselves.

Not prepared to be the mother of an 8 year old suicide victim, and having hit a brick wall with the school, I did the only option left to us and pulled him from school. Because he'd improved with a trial run at home the GP at the time didn't want to refer him to any mental health services - clearly the root cause was school and so it was an education issue.

The education system and the health system here are like cogs grinding in opposite directions even though children and their families need a clean and simple meshing for the best outcomes for the children.

I was aware at the time that pulling W from school and homeschooling him meant that he wasn't entitled to any supports from Special Education, therapies etc. At the time it was the least of our worries - and these had been denied by the school anyway so really seemed a moot point. This was his second school letting him down like this and as we had already discovered, if a school refuses to apply for funding there is nothing anyone can do about it - even for a kid with a diagnosed disability.

However - 5 1/2 years down the track we now discover that just because he hasn't improved as we had hoped, that testing points that his best educational setting is not compatible with a mainstream schooling setting, schools' autonomy continues to run rife and funding for children with mixed needs simply isn't sufficient W's options are surrounded with brick walls.

The policy - both that of Special Education and that of the National Disability Framework - states that people with disabilities should have equal rights to basics as compared to those without and this includes education. Special Education policy states that those needing special education supports have the right to the most appropriate educational setting for them to be successful.

And so, armed with the testing showing that mainstream school will not be the setting for W to be most successful we asked for an assessment for him to be enrolled into Correspondence for his secondary schooling. I can't teach him the range of subjects he needs at this level and he's entitled to an adequate education.

The first assessment was a total fiasco with relevant people not contacted, irrelevant people contacted, a report riddled with errors including a mis-representation of W's official diagnosis of Asperger's Syndrome. It resulted in a formal complaint from us which has not been upheld - despite their decision letter not addressing 3/4 of our concerns and the section regarding the mis-quote doesn't even make sense!
However they did concede to giving W a fresh assessment.

This assessment was yesterday - and very thorough - even including meeting with and assessing W which never happened before!
However we don't expect to get the approvals he needs as apparently, once you opt out of the system you stay out. It is apparently against policy to go to Correspondence from homeschooling. You can only go to it from school and on a school's recommendation.

W would not attract any funding help other than what a school decides to give from their discretionary funds and as already experienced there are many other demands on that money and a child who does not create difficulties in class is unlikely to get it and when a school decides not to help then no one can make them.

So we have no good choices here - we either make up his secondary schooling as we go along, pay for a curriculum which won't lead to a national qualification (although apparently NZ Universities do recognise it currently) or throw him back into school. As the first assessment also included significant time delays he would not be able to go to the most appropriate school for him as we live out of zone next year anyway.
Even if we could get him into the most appropriate school supports are dependent on the school's willingness to supply them and even then testing says this won't be the way for W to actually achieve to his potential. He will be spending all his energies coping rather than learning.

Once he is exhausted by coping he will deteriorate. W, being the kind of kid he is, will turn that in on himself rather becoming a problem for the school.
He already has a tendency to saying he is useless and worthless, he previously engaged in mild self-harming behaviour and is at risk for depression anyway. But none of that will be enough for a school to say they aren't managing him and that he needs to go to Correspondence. That will take some major problem.

The system is saying we actually have to leave him to sustain significant damage to his mental health, self-esteem and educational progress before they will help him - great point to be able to say 'told you so'!

Quite apart from the impossible situation this leaves W in it leaves me wondering - everyone says we have a world class education system here - really??
No wonder that we have around 20% of people leaving school with no qualifications, have such a high dis-engagement with education rate or why home-schooling is increasing these days. The rise is mostly made up of those with kids with mild or mixed special needs.
The problem is, while the issue is 'fixed' from the education system's view-point when these kids leave, our situation is going to become a persistent one as these children reach secondary and parents want the best for their children.

There is also no wonder that the employment rate for those with diagnosed Asperger's Syndrome apparently sits around 8 - 12% - and we're talking part time not full time employment!

Considering we have our 20% non-achieving tail, the rate of those diagnosed with ASD is increasing, as people saw from my post on World Prematurity Day the numbers of prem children with moderate learning differences is rising - what are the actual numbers of children not being well served by our 'world class' system?

The latest Government document on Special Education was entitled "Success for every Child"
                                         - it'd be nice wouldn't it?

Like a Curate's Egg...

I don't know how many people are familiar with this expression - like a curate's egg - good in parts...
Basically it means a situation or item which is good in some parts but rotten in others.

That's pretty much where I feel we're at with the younger two boys.

After the total devastation of the other week we saw the paed for N. There's not a heck of a lot anyone can really say or do now. We're switching N to a different ADHD med - Strattera - which according to all the doctors doesn't have any effect on appetite. However on my reading from Medsafe and later the actual packet insert decreased appetite is second on the list, second only to constipation which is a significant, existing problem for N - and which can have it's own negative effects on appetite...

His ADHD is actually under pretty good control with the dexamphetamine so we didn't need to do this and the risk profile for the Strattera is much higher so if it doesn't work then I, for one, would be happy to move him back.
That said though it's not a controlled substance, we can get repeats without needing a new script and it's once a day dosing instead of 3 times a day so there are some bonuses there too.

I have done more and more reading and research on N's situation, plotted the last two years weights and so can marginally see where the surgeon is coming from. The anger isn't white hot any more although I'm exceedingly disappointed in the lack of communication. The yo-yo act is one I ought to be used to really since he went back and forth for about a year with T as well. The frustration is still there though but largely directed at the agonising situation we find ourselves in. Even the paed said if the med change doesn't work and one more med added doesn't help then she'll certainly look at the correspondence through Health School situation.
N narrowly missed being admitted to the hospital for who knows how long when we saw the paed on Monday but we explained our reasoning for strongly not believing that was the best approach and she agreed. If we need to go to the drastic steps of the next med then I really want to push to get other supports to increase the chances of success as much as possible.

It would appear that N's situation most closely matches the diagnostic criteria for either "Feeding Disorder comorbid with a medical condition" - which can continue to exist after the medical condition (reflux and later food getting stuck in his nissen) is resolved, or "Post Traumatic Feeding Disorder". While the PTFD (google it - they really do call it that!)  often  has a one off event triggering it, it can be triggered by repeated GI insults as well and I'm really beginning to think that's where he sits. I've said for a long time he's scared to eat and afraid it'll hurt.
It might not get us anywhere but it's good to have a new term to search and I'm still doing heavy duty reading on treatments as that way I can have studies behind me to counter the surgeon's "studies say might help but might not" stance.
One of the vital and significant things to come from either of those diagnoses is that it is not an eating disorder and treating it like anorexia et al can actually make things worse.

And so that's the rotten part of the curate's egg.

The light, fresh and enjoyable part is to do with T and his eating!

Ever since he started burping a lot more a few months back and we felt the icy clutch of fear that the 'gloopies' were on the way back I've worked harder to get him to drink more of his formula. He seems more comfortable with fewer tube feeds and the burping levels seem to have largely decreased to more normal 6 year old boy 'because I can' levels!
Before he'd do strings of burps and then wind up groaning. Now he's full of grins and "Sorry, I can't help it!"

So I was slowly coaxing up the volumes with his Neocate during the afternoons as his programs on tv run longer then. He'd been drinking at least some of his Neocate every afternoon for about the past month and by increasing 10 ml every few days so I'm not pushing him too hard - and he's not freaking at an ever increasing glassful, which he was doing.

Anyone who has or had had a child with food allergies, especially dairy allergies, knows that while Neocate is a fantastic gift to mankind in terms of covering nutritional bases, it tastes vile.
Even the powder smells vile.

And so T's afternoon drink has been a bit of a performance - I measure out the formula, lace it with enough vanilla essence to turn it slightly brown and keep it really really cold. When it's time to drink we measure out the required amount into his special penguin cup and supply him with a straw. He also says that it only tastes good with chippies so he gets a small handful in a bowl. He has this process where he measures the chip against the formula levels and that determines how big a sip he's going to take - I think, I've never quite got the rationale behind this ritual. But whatever it takes to get the revolting stuff down him!

I've been slowly increasing the afternoon drinks and taking it from the morning tube feed volumes. I'd planned that once I got him down to only 100mls it wasn't worth tubing so I'd add it to his night feed. He was down to 140mls...

Monday morning and we were off to the paed for N. None of the grandparents have managed to come to grips with the tube feeds so I persuaded T into drinking his morning lot and promised him I'd tube the afternoon one then. He agreed and all was fine. Come afternoon and T announces there's no milk for him. I looked in the fridge knowing there was plenty of formula made up and light dawned...he meant pre-mixed with vanilla essence to drink.
He'd forgotten I was going to tube it.
I wasn't about to remind him but fully prepared to trot out the 'Oh I forgot' line if he baulked at any point.
And he drank the lot.

At that point I reminded him and told him how clever he was and wasn't it wonderful not being tied up to his pump!

And since Monday he has drunk both 'feeds' everyday. We've agreed they are 'drinks' now not feeds because he's not being fed them.

This is a massive break through because he's had two tube feeds a day since that dark dark day in Oct '10 when we realised just how badly we were losing the fight and he needed extra regular nutrition because he just wasn't getting enough to cope.

I'm still working towards swinging it all to the afternoon, up to a 200ml max, because we're hoping to be able to send him to school! We've found a school, class and approach which we think will work well for him. There are still a lot of hurdles to jump to get him there but one of the biggest was getting him off tube feeds in the day and we've done it! We do need to get rid of the morning drink totally due to needing it to stay cold but we had a huge boost in that direction this week with a massive 500g gained in 11 days!

So not content with losing the day tube feeds (and saving me a good hour each day in feed supervision and clean up) he's also scored a total volume decrease as well. He's only needing 90ml in the morning thanks to the decrease and is up to 160ml in the afternoon - so it's all within reach.

His total solid foods are still a long way short of normal for his age but increasing as well and considering he's grown 5cm in the past 8 months as well as gained 3kg in that time he's making really good progress!

In T's case the light at the end of the tunnel really does seem to be the end of the tunnel. We may even have to start thinking about his "Bye bye Pump party"!

We're thrilled, he's thrilled and so was the dietitian today.

It would have been an altogether fabulous appointment today if I hadn't asked how many calories per day N should be getting. Quite apart from the fact that it sounds like a totally unattainable 2300 cal a day when she plotted his current weight on her chart her immediate response was "sh*t!"
Um, yeah, I guess it's nice to know I'm not being paranoid after all - and maybe a re-referral at least for a one off assessment of where N's at might be a good idea...

And so life is definitely like a curate's egg...

As hope fades

I'd thought of a post on being stuck in medical limbo - again - waiting for doctors to finally do something.
That's what I've been writing in my head for the last month anyway.

But just yesterday all hopes were dashed.

P has been saying for some time that he'd given up hope N will ever eat properly again.
He'd also been saying that the surgeon won't do anything when it came to the crunch.
I'd stayed optimistic - if I give up on N then there's no one believing in him, no one pushing forwards, trying, hoping, praying it'll work out in the end.
I'd also believed in the surgeon - he said he'd try a naso-gastric tube trial in September when we saw him, he'd called me at home twice to discuss where things were at, the hospital teacher had called me as well on his request, when N was in hospital for suspected appendicitis early in November we saw him then and as recently as 4 November he said he'd admit N.

We happen to see him socially as well and he'd chatted informally with us, happy and smiling.
I said to P that he's a straightforward, honest guy and he simply wouldn't behave like that if nothing was going to happen for N.

So we put our lives semi on hold. P pulled out of a Christmas concert with the prospect of N's hospital admission, I juggled round the kids' schoolwork and sorted out ways for the household and school work to run with several days out of action.

And nothing happened.
And nothing happened.
And nothing happened.
The paed asked us what was happening as he'd said to her he'd do this trial - we said we didn't know.

Finally I asked the GP to write a clinical account of how N was during his last retching/headache/vomiting/nausea episode since it was the first time she'd seen one and definitely there was no other cause for it other than his not eating and drinking. She said she'd do one better and ring the surgeon.

Our hopes raised.

And were dashed.

She called me back and said the surgeon has categorically told her he will not even do a trial never mind put a tube in. If N was on the 3rd centile and lethargic all the time then he'd consider it but the international studies said that while it might help it might make things worse and the risks of the surgery outweigh the benefits. He recommends seeing an educational psychologist. We also got the tired old story of time and puberty will make him want to eat.

And so there is no more hope.

N is on the 3rd centile for weight - and static so will naturally travel further away with time.
He doesn't have the stamina to do a full 3/4 hour swimming lesson.
He can't drink large volumes at a time - the surgeon says this is because of his nissen (the reflux surgery) working properly - and so needs smaller volumes frequently.
He has these episodes around once every 3-4 weeks. By my count of events recorded in his food diary he's had 39 acute days between January and end of November. That's not including the day each time it takes to claw him back from it, or the times it started late in the day or in the morning and I managed to get him to drink enough to ward it off. So it'd be easily 80 days a year affected by ill-health due to his eating.
Days he'd be unable to attend school.
The kid's bright but not that bright that he can do a year's school on only 3 out of 4 terms.
The paed has already agreed that the way things are he is unable to go to school anyway.

Puberty is largely affected by weight (see fact weight is static!) and he's showing no signs at nearly 11. It's quite likely he'd be late going into puberty anyway so by the time he's 14 or so the non-eating habit will have been going for 7 years. Real likely that a habit that well formed will just change miraculously by itself.

I'd love to see international studies dealing with N's unique cluster of issues - ADHD affected eating, appetite suppressant meds at the same time as eating causing pain, extensive reflux history impacting on eating when younger - and what they say about the use of any kind of supplementary feeding.

I have no concerns about his academic ability, never have had.
Only the impacts of not eating has on his behaviour and ability to learn.
Telling us to see an ed psych is about as much use as telling the parents of a child failing to learn because they are hungry and parents can't afford the food to see an ed psych.


We often smell ketones on his breath due to lack of calories and he's complaining he feels his heart skipping beats at times when he's not eating/drinking much. I hate to think what the long term health consequences are of this for N.


And so, we'll have to increase his Ensure volumes. He roughly needs 2000 cal a day and we've been supplementing to 1500 but his weight is static and everything else also says he needs more.
We haven't increased until now because drinking 2 litres of 'milkshake' a day will totally kill his residual desire to eat.


But we have no choices left now.
There is no hope now.

The surgeon said he would only consider a tube as a last resort - what else is there for us to do?

I still remain of the opinion that I can get him eating again if I have the right tools.
But I have just been denied that.


And so we have made a paed appointment for N.
Not to discuss what progress he's made or where to from here
No, the time for planning to get out of this mess has gone.
We are simply going to have to tell her where we are at - and give her the forms for N to do Correspondence School funded through Health.

All that hope, those dreams, the planning are gone.


There is no way forward, ladder out of the hole - just deeper into the abyss.




I feel betrayed - betrayed by the surgeon who didn't even have the courage to tell us to our faces, explain how his decisions can change so radically in 24 days when the clinical picture hasn't.
We did everything he asked - bloods, x-rays, endocrinologists, adolescent health specialist (total waste of time) and above all waited for things to improve.
He took a risk in T's care - and wrought something which was nothing short of a miracle - but won't even try for N.


Paeds, paed surgeons, GPs - they all get to sign off on the kid's care. We never get to sign off on the duty of care for the kids.


My beautiful, bright, bubbling boy, so social and engaging, who would thrive at school given the right supports and tools - cast to one side for what are incomprehensible reasons.


The fight is over and hope has gone.

All you need is....follow through!

Here in New Zealand we have our General Election tomorrow.
There are a lot of issues on the table for us all to consider and, of course, a lot of promises have been made by politicians.

But one thing which, it strikes me as having been a problem here for a very long time, is nowhere to be seen.
It stands at the heart of so many of the issues affecting the country, the systems, us all.
And that is - follow through.

There largely seems to be none at all and where it does chance to happen it's usually due to other factors forcing it to occur.

On a nationwide scale - it doesn't matter what side of the argument you are on with regard to National Standards (a new assessment tool here). The major, underpinning flaw is they funded the implementation so finally we (as parents) have a clearer picture of our children's achievement but not any remedial help for those identified as failing.
Follow through people??


They introduced a 'developmental' check for 4 and a bit year olds to try and identify issues before they started school. But the vast majority of 'assessors' are simply Plunket nurses picking up an extra string to their bow but, in my and anecdotal experience, many have very little knowledge on which to base their assessments eg the Plunket nurse who told me - and wrote in W's book - that he was meeting all milestones even though she also wrote down he was getting Early Intervention help at the time. He'd qualified for OT and physio help because he wasn't meeting milestones!
This system has been put into place as a crude screening tool and then concerns are referred on to experts - but the experts are under-funded anyway and thanks to the surge in possible referrals the wait is now around 18 months in our town. Since that'd take a kid to nearly 6 years old the whole 'before school' thing sort of gets lost...      Where's the follow through?

We have a horrible record for child abuse in this country. I'm not sure of the current stats but we'd have over 100 kids die each year due to child abuse.
There was a case recently where our Child Protection people knew of issues with a family and were actually trying to remove a child from the family's 'care'. However, somewhere along the way they 'lost' the family and couldn't find the kid. They couldn't find it, until it turned up in a hospital with brain injuries and later died.
Where's the follow through on that?

Some people will know my vehement view that if we are going to have good neonatal care in this country then we also have to have extra funding for Early Intervention, special education, extra health needs and so on. If we are going to spend the money on the babies then we have to follow through and spend the money on the children they grow into. Hopefully if we spend the money on the children they grow into then we won't need to follow through and spend so much money on the adults he children grow into.
This is particularly so for those moderately and mildly premature children who, with a smaller, less intenvsive or at least less prolonged hand can streak on past or round their roadblocks. These are the kids where there is never a debate about giving them the NICU care in the first place and so they, and their parents, always have to carry the can.

We had a discussion with the kids' surgeon about N and how his eating and formula volumes are a large part of what's holding him back from school. One of the things that was thrown about was that it's unethical to do something for the child just because another system won't be flexible enough for him.
Actually, I feel what's unethical is the fact that so much money was spent keeping his brain in a good state in the NICU, supporting him as a baby, keeping him alive when he wound up in the ICU at 6 months old, giving him some Early Intervention when he needed it and now we run into roadblocks trying to get him to school and a suitable education for that brain to use, grow, develop and actually do something with!
Again - follow through?

And on a much smaller scale - T was getting SLT when he was littler. Due to the vagaries of the system he had to have a hearing test, then go on a waiting list to be assessed to see if he'd qualify for SLT and if so then join the next waiting list to actually get therapy. So I duly did the hearing test - quite a mission it was too! Then I got a letter saying we hadn't shown up for the appointment! Since we'd been there for over an hour and seen two audiologists in the end I wrote a strongly worded letter to the hospital and asked for a copy of the results to be sent to me as well as the GP. If  I didn't have the report when the SLT came then they wouldn't do the initial assessment. So I got the report just in the nick of time for T's assessment which I refused to miss because the hospital couldn't organise itself as we'd waited over 6 months to get to that point.
T qualified and 3 months later started therapy. The therapist left but did a good handover to the next one. She was often sick and then disappeared. We later got a letter saying she'd quit and as T had had over 6 months of therapy he would go to the bottom of the waiting list again. We rang and complained that actually he'd been on the books for 6 months but had only had about 6 sessions due to illnesses/cancelled appointments and had already been nearly 2 months without therapy and we didn't want him to go to the bottom of the list again. They checked their records and confirmed what we'd said and as soon as they appointed someone T re-started therapy.

But again it's the lack of follow through. It shouldn't have been up to the parent to keep records, keep on top of things and events and appointments. They have records too and they should have checked before sending out letter dumping kids.

Things are fragmented. I'm sure they are in every system really.
But follow through seems to be hugely lacking here - and would make the systems work so much better with very little extra effort. Those who are employed to keep track of the people ought to do it not just cross their fingers and hope for the best. The funding needs to be there for the systems to actually work - not just put half a process in and hope.

What this country needs - is follow through!

"Just a cold"

I dream of that day arriving - the day when a cold is 'just a cold'.
It's been about 13 years since I didn't regard the onset of a cold for one of the kids with dread.

My last post was all about long term fall out of being a late pre-term child. That was developmental stuff which has such a far reaching effect through their lives.
But there's another spanner my guys, and many other prem kids like to throw into the works, especially when they are working hard to thrive.

When they get sick they fall fast and hard.

When the boys were all younger a cold meant not just a nasty case of snuffles but usually croup, chest and ear infections, antibiotics, reflux flare up and the resulting weight loss which usually meant about 3 months hard work to get them back to where they were pre-cold.
Things aren't quite so bad these days - for a starter thanks to the wonders of surgery none of them reflux any more!

Whenever N gets sick his eating goes to hell in a handcart and if he's already going through one of his extreme non-eating binges then it happens really fast. Last time T got sick we were lucky to keep him out of hospital and it was really only thanks to his gastrostomy tube and feeding pump that we were able to keep it running really slowly and almost constantly and so kept him hydrated. Big achievement that time as I kept the weight loss contained to only half a kg!

T's doing really well lately and so you can imagine my dismay when he started to sound snuffly recently.
Normally I immediately swing in supportive measures - increase feeds, decongestant meds, pain relief, coaxing tempting titbits of food etc to try and head off the worst.
But this time I wanted to see what his body could do for itself. We're making progress towards weaning off the tube and a major factor in that is being able to cope with bugs without needing extra tube feeds.

So the first day he seemed okay, just congested but happy enough but by that night we were up with him retching due to all the mucus in his system.
Even though none of the kids can actually vomit properly any more after their reflux surgery there's nothing quite like that distinctive retch in the dark of the night to get a parent running a sub whatever second sprint to a kid's room!

T's lucky in a warped way, with his tube we can vent the air out of his tummy which is making him feel horrible - and along with it a certain amount of the mucus he's swallowed can be removed.
So we fairly quickly settled him and went back to bed.

The next night we were up again - to the dreaded sounds of croup. The poor kid was working reasonably hard to catch his breath between coughing and crouping and wouldn't lie down. But the good old trick of extra pillows and lots of calming reassurance worked and he eventually settled and went back to sleep after a round of cold meds and some ibuprophen. I was thrown back into the "Does he need help? What supportive measures do I put in now since he's not holding his own? Why can't this be 'just a cold' for once?" dilemma.

Apart from the fact that W complained he could hear T coming down the hallway that morning as his breathing was so loud he did seem to be managing that day.

The biggest problem with croup in a tubie is that all the pressure from the tummy muscles being used in breathing can actually send the feed backwards - and on occasion with T he's been bad enough to be triggering alarms on the pump because it reads the backwards flow as a blockage!
But he was still eating and drinking reasonably so I decided it was time to play chicken with the cold bug.

4 days into the 'cold' he was still running temps, sleeping at times and propped up on cold and other meds but nothing prescribed, no trip to a doctor and no increased feeds.

He saw his paed on day 6 for a routine check and she declared his chest clear so all the gunk has to be restricted to his nose. His weight was also static but he had been weighed only 2 weeks prior.

We're now around the 9 day mark on this cold. He's still really congested, mood's a bit fragile but through all of this we've scored some firsts -
 - He didn't need to see a doc specifically for any effects of this bug.
 - He hasn't needed antibiotics at all - he often gets a secondary infection round his tube site when he gets sick but that hasn't happened either!
 - He hasn't significantly dropped off in his eating or drinking - this is a major first!
 - and because of the continued drinking and eating we haven't had to increase his feeds at all.
 - while he hasn't gained weight he hasn't lost any during this bug either - a major major first!!

So while he's still sick, got sicker than you'd expect from a 6 1/2 year old with 'just a cold' he's come a long way and made some major strides - one day, maybe, we really will have 'just a cold' in the household!

But in the meantime, this is another example of why people sharing bugs drive me crazy. It may well be just a cold to your kid but we're at day 10 and counting with a kid who is still unwell. People blow off the effects of a common illness but to kids already struggling it can really tip them over the edge.

So spare a thought next time you are coughing away - do others really need that bug - and do you know exactly who you might be spreading it to?
It won't be just the kid who gets it either - kids are generous...I 'm coming out the end of it too!