Just a mum?

Thoughts which percolate frequently round my head and have come to the forefront as I vacuumed the floor - amazing when you find a moment to think!

I had a slightly flippant conversation with someone recently about the amount of exercise you should have each day. We all know the 30 mins a day thing but some new research came out saying that in fact that does nothing for most in terms of weight loss and you'd be better off just watching what you eat. Anyway his comment was "You spend too much time reading the internet, don't believe everything you see on Wikipaedia." The implication, not stated, but implied and stated in the past from this person is along the line of mums at home = brain atrophy. Exaggeration but we all know the public perception.

Just as a starting point I DON'T use Wikipaedia -I'm fully aware that anyone can add anything to that and it's NOT a reliable source of information. I won't even let the kids use it.

But I've been thinking again (see, got to be sure that brain doesn't atrophy after all!) and the perception that mothers in general, but mothers at home in particular, loose some edge, some brain power and certainly loose regard and aren't taken as seriously really bugs.
Rather than getting mad - and vacuuming harder to get the playdoh out - I was wondering why and where this perception has come from.

Is it in part a social overhang, from the days when women did fairly minor jobs, marking time until they got married, had kids and dropped out of the working world?
Yes, probably.

But I wonder how much of it is because of the perceived lack of importance of raising children. See, I don't say child care or even caring for children. I, we, are raising the next generation of citizens. These kids, a perceived waste of our time are actually going to pay your superannuation people, with their work and taxes. There is an economic value to these little units - if you have to reduce it down to that. And so raising them well, so they produce returns not cost (health, prisons etc) should be valued.

So why isn't it?
Maybe people feel uncomfortable about regarding actual human beings as economic units.
But aren't we doing that already in health (deciding who gets what care when) , in education (EFTS), social welfare (deciding on amounts that someone can manage on in terms of a benefit)?
Why not put a value on parenting, on what good, hands on parenting can add to our little units?
If we can contemplate performance pay for teachers why not at least say - to be an available parent to your child it costs you $x on average. So in recognition of that we'll contribute $y.

But we, as mothers (and fathers who stay at home with their children) put ourselves down and don't value ourselves either.
Oh, I'm just a mother, Mummybrain, I'm barely functioning etc.

Caring for children and most often doing it in conjunction with running a household is an intricate dance with many many skills required. Often, especially in the early days of a child's life we are expected to do it on very little sleep - hence the Mummybrain and so on.
In fact most people would NEVER be expected to do any of these complicated tasks on so few hours sleep - and we put ourselves down for forgetting 2 out of 20 items at the supermarket.

On my own case, and what's sparked this off really, was considering what I actually do do within each day and each week. Do I use my brain? Am I just sheltering from the world and vegetating?
Do I actually deserve the scorn which is so often poured down - and like many stay at home mothers - some of that scorn is poured from working mothers who are regarded as more productive economic units than those of us at home.

So - I do use my critical thinking skills - evaluating not only the day to day nutrition of my household, but also in my own particular case - evaluating advice, information and plotting the path forwards for each of my little units.
We all do this with our kids but with kids like mine it's a more involved path.

My conversation partner at the top of this suggested I was reading the most easily accessible information available without evaluating where it had come from.
Those of us with more complicated little units don't find the information easily at hand to help them. Depending on what's going on at the time I spend a certain amount of time each week reading, evaluating and researching. I consider where information has come from and how reliable it is. Recent extensive research has centred around long term outcomes for the kids' surgery, long term side effects of some of their medication and the outcomes from the kind of speech therapy T is currently receiving.
Always on-going research is on the topics of Asperger's, ADHD and feeding programs and approaches for feeding difficulties. I get brief updates from the NEJM, medscape is a web link in my bookmarks. If I google a specific topic it's usually through Google Scholar.

And why do we have to put these kinds of hours in? In part because we're regarded as 'just mums at home'. We get patted on the head and told this is the best way to approach our child's issue, or told (as I was about 6 months ago) that there are no long term side effects for children on a particular medication, only for adults. Um, yeah, my brain's not that far gone that I believe that one!

I co-ordinate appointments with at least 2 different professionals on a weekly basis, I keep records of where we're at and who said they'd do what for which kid. I monitor medical supplies (as well as coffee) and ensure we don't run out. I continue to ward off issues related to Asperger's, I try and mitigate the effects and interpret the world to W. Most importantly I try to teach him how I know these things so that one day I might do myself mostly out of a job.
I do speech therapy sessions - not just in set moments - but also monitoring and re-directing speech on a constant basis. I monitor, re-direct and teach compensatory tactics for the effects of ADHD. This is in addition to all the normal, intricate balances of running a household and raising my children.

I am a professional mother.

It's time being a mother was regarded as a profession not 'just a mother'.

Let's ask - and expect - to be treated in the same way as another professional would be.
Next time you are asked what do you do let's be proud of our occupations. We are professional mothers nurturing, raising and adding infinate amounts of 'added value' our the next generation.

A Reflux-free household?

Does such a thing exist?
I've not lived in one for over 11 years. Can this mythical being be true? Do I dare hope?

We are counting down to W's surgery - 14 days to go.
I'm both looking forward and dreading it in the same moment. I loathe loathe loathe taking the kids in for this kind of thing. It's the total antithesis of parenting, to take your child somewhere and allow them to inflict pain on them - but it's short term and when you see W in the midst of a reflux episode you know it just absolutely has to be done.

I hate the fact that all 3 kids have suffered so badly from the demon reflux that all 3 have needed surgery. Why us? Why them?
I am actually going to ask the surgeon at W's follow up appointment if he has any idea why - he's seen more of the kids than I have, is there something under developed, some muscle which is smaller, weaker whatever than expected.
There must be a reason other than total crap luck, possibly genetics and the effects of prematurity for 100% of our kids to need surgery to stop the reflux.

I have total confidence in our wonderful and caring surgeon - I certainly wouldn't have brought T to him after N's surgery, or W if I had any concerns, this guy's manner is fantastic.

I have confidence in MY ability to guide W'S recovery and know what's normal and what's not - I wouldn't be doing this so close to Christmas and our summer holidays otherwise.

I know W's in a much better position healthwise than T was before his surgery and that it'll be much easier than T with his tube etc.

But I also know W is going to need more TLC and alert watchfulness than N did. W is going to find this very hard emotionally going into it all and he doesn't have the skills to be aware of it let alone express it and ask for help. He doesn't show pain like other people do and it's going to take a fair bit of watchfulness and persuasion on my part to ensure things aren't unrecognised on that front.
So there are other challenges involved in this surgery.

I'm also extremely hopeful that this surgery will be the end of W's cardiac issues and his snoring. If not we're back on the treadmill - an ENT for the snoring and back to the drawing board for the cardiologist. I'm 99% sure myself that that's the root cause but that 1% just keeps niggling - can it be that simple? I know that reflux is the square root of all evil - but this is my family we're talking about - things are never simple!

8 Quick and Easy Lesson on how to Melt Down an Asperger's Child!

Quick Lessons on how to Melt Down An Aspie -

Lesson One -
Unpredictable reflux episodes - happening any time anywhere with varying degrees of pain ranging from a quick ow to full on taste blood and have dizzy spells because of a nerve irritation causing cardiac changes.

Lesson 2 -
Give them medication which needs to be taken 30 mins before eating each morning and watch them stress when you suggest 1 min before the time is up that they could have some weetbix now - repeat each morning for months on end.

Lesson 3 -
Do various medical investigations - stressful in it's own right and decide that surgery is the best option to deal with the reflux but wait for a couple of weeks for test results.

Lesson 4 -
Get test results and possibly query doing another test which will really set off your sensory issues - and set surgery indefinitely but that it will happen.

Lesson 5 -
Decide the next test is too much and we just want to get on and book the surgery as the surgeon said we could do - but be unable to raise the surgeon...for 3 weeks.

Lesson 6 -
Chase up the surgeon's nurse only to get a call the next day saying surgery's in a week and a half - watch the child completely fall to pieces.

Lesson 7 -
Pull the kid together and tell them it can't happen then because their father is going to be away so there's no childcare for a hospital stay.

Lesson 7 -
Call the nurse, who calls the surgeon and then calls you and we finally get a date set for 1 December.
Fall to pieces a little yourself as you realise that you are about to put another child through major surgery and instead of just thinking and talking about it it's really going to happen.
Child falls to pieces all over again.

Been a while...

Well, it's been a while and life keeps on moving.
Last month was hectic with 16 medical or related appointments - this month it's a much more manageable projected 10 planned appointments. Of course that's barring disasters but still, touch wood it'll all be fine!

I can't remember where I was up to with kid updates but things keep changing there too.
T's speech was improving and has recently gone down the tubes again too. The SLT did say to expect that so I'm not too concerned - and T has another session on Tues or Wed next week anyway.

On the W front we're still waiting to talk to the surgeon. He's said that W does need surgery at some point for his reflux and our view is, since it's having an effect on his quality of life etc that sooner is better than later. There are reactive cell changes going on in response to the reflux - basically that means he has some but not all the markers of oesophagitis - my guess would be that he has some but not all because he's on medication so it's helping but not stopping the reflux.
The surgeon was suggesting possibly doing a pH probe before going to surgery but was prepared to do the surgery without doing a probe. Now - anyone who has read their way through this blog knows what I think of probes and their reliability and reproducibility (69% reproducibility rate in paeds use) so I'm not going to do another anti probe rant here but needless to say it didn't take us too long to decide against doing a probe!
We should be in contact with the surgeon tis or next week and can hopefully get the surgery booked for December. Otherwise he'll probably have to wait until Feb.

I hate the idea of doing it - at all. But I also know it's the best option for him now and if we have to do it then let's just do it already! It's just over 2 years since N kicked this all off with his fundoplication and in the past two years I have taken a kid to theatre 4 times. I'm really sick of it, the stress and the trauma of it all. It never gets any easier, it doesn't matter how often you do it or how old the kid is. Let's just do it and start 2010 as a good health and no surgery year!

We're working with N on his abysmal eating at the moment too - the paed has pulled the Fortisips for 2 weeks to see if his eating kicks in. Neither of us are holding our breath - it's been 5 days now and while he's eating a bit faster and so less stressful he's not eating any more than he was without them - and currently 500g down. At his current rate, when we go back in 2 weeks he'll be 1.4kg down. He didn't even eat his lunch after spending all morning at the park yesterday.

Other than the kids there have been a lot of other thoughts whirling round in my head lately - mostly prematurity related.
A number of months ago now my father said that we shouldn't count W as a 33 weeker any more because he's 11 now and too old for that.
There has been discussion in the papers here about how early is too early to save, and a couple of cases of 21-23 weekers left without NICU care - and of course if we save these babies then where are the abortion marker dates etc.

So - who is a prem? What does being a prem mean? When are you 'too old to be a prem any more'? As well as the more complex and ethical debate on viability, what's 'too disabled' and who is going to help care for these kids as they grow anyway?

Here in the Catholic Church we have what's known as Respect Life Sunday this Sunday. The monthly paper said on the front page that as part of that they had an article about the difficulties of getting care and support for disabled children.
I got quite excited and eagerly flicked to that section...only to discover it was a mother talking about what it was like 30 odd years ago with her severely autistic son.
Why could they not have got a parent going through it all NOW? Why could they have not got kids on the more marginal aspects - like mine? Everyone knows that basically it's incredibly hard and funding is near non-existent for those severely impacted. What people congratulate themselves on is tht at least we're serving the minorly impacted kids out there in our community. BUT WE'RE NOT!

That's the dirty dark secret, that while resources are scarce for the severely disabled, they are virtually non existent for the less impacted, the multiple 'minor' impacted kids are struggling by with nothing - unless the parents make it their full time job to find out how the system works and scream until their child gets some help, which is often so fragmented that they wind up with input from multiple agencies individually and on seperate waiting lists.

So you tackle one aspect of a problem by finally getting to the top of a list (if you are allowed on it in the first place - if you are disabled enough!) start work on it and either get to the end of the problem or discover there's another facet which actually needs a different therapist so you join a different waiting list.
In the intervening 12-18 months while you wait, the old problem has reverted to the way it was because the first therapist couldn't quite help with it fully because there was this other aspect you needed to deal with. So you re-join your first waiting list and hope madly that they'll both come up together!

So many people think that arriving 4, 6, 8 weeks early really isn't that significant, isn't really prem, is something you grow out of - magically get 'too old to be a prem'.

But life's not like that for many of these late prems, the invisable prems, the 'not really prem'.

The stats are showing that even 36 weekers have a 5 fold increase in ADHD, significantly more 32 to 36 weekers need extra help in school with their reading, writing and maths than their full term peers. You are meant to float around, cushioned from touch, light and sound for 40 weeks and when that gets cut short it has affects on their wiring.
The late premature children even have a rate of feeding problems comparable to that of much more significantly premature babies to to the age of around 2 years old. It is now being acknowledged that when feeding problems start to occur in the late pre-term cohort they actually need as much specilised input as a 28 or so weeker. They don't get it because their prematurity risk is ignored and so the problems compound.

So in answer to one of the questions posed at the start of this - how old is 'too old to be a prem any more' in my book the answer is never. While it is a risk factor which needs to be added in developmentally, educationally and, as he ages, medically then it always has to be in mind.

Some 36 weekers come out fine or the impacts are so minor that you wouldn't know it unless you did a detailed MRI of their brain and found the 'premmy brain'. That's wonderful and fantastic for them and their families - they've got to the "can't pick them out on the playground, what were they wearing this morning?" stage. W, thanks to his Asperger's (due to prematurity) will never get to that indistinguishable point. N, with his ADHD (due to prematurity) won't reliably get to that point. Who knows with T but if, as is suspected there is some kind of language processing problem going on, then he won't either.

They have to live with the marks and affects of their prematurity every day of their lives, it has marked, affected and changed the kids from who they might have been. Some changes may well be positive ones but they are changes none the less. Their prematurity and struggles have also marked and changed me - as a person but particularly as a mother. Again, some of the changes may well be positives, but they are changes.
Prematurity will always be with us - and they will always be premature, among other things.
But first and foremost they will always be my W, N and T - my wonderful, amazing beings of whom I am intensely, crazily proud!

It never stops and I want it to!

So, not a quippy title but pretty much sums up where I'm at right now.

W had his scope yesterday to check on his reflux and any damage, biopsies to double check for allergic disease ect.

This was his first anaesthetic and he was very scared beforehand. Thankfully having been through all of this about a year ago with T I was able to tell him pretty much exactly what was going to happen when. Turns out he's like his mother and vomits on anaesthetics - sigh.

The surgeon has said that his oesophagus was quite red in the middle portion - had more to see than with either of the other two! He took biopsies from top, middle and bottom - pink at top and bottom.

Anyway we get the results and schedule yet another nissen fundoplication on the 22nd of Sept. At this point the probable surgery date is 6 Oct.

I was even recognised by a Recovery Room nurse yesterday - this is 4th time I've taken a kid to theatre in less than 2 years. N kicked this all off with his nissen on 2 Oct 2007 and if W gets the 6 Oct date then all 3 will have had this major operation in the space of just over 2 years.

I'm so tired. Tired of kids in pain, tired of kids with health concerns, tired giving meds, monitoring weight, trying to get them to eat, tired of hospitals and doctors - just plain tired.

I just want it to end, I do NOT want to be looking down the barrel of just starting the treadmill all over again.

But we need to, William needs it to happen. 30mg of omeprazole wasn't stopping the reflux, it's causing the cardiac stuff - the reflux has to be stopped and this is the way to do it.

But I want to curl up somewhere or throw a full scale 2 year old tantrum!
IT'S NOT FAIR!

N still isn't eating properly and I've just made an appointment for him for the paed. I don't know what the next step is there - gee maybe we could throw the surgical option at him and put in a tube - yeah whatever. Doubt it but my kids seem to be surgery magnets at the moment so what's another one...I just don't want to ever take a kid to theatre EVER again!
I hate it, hate handing them over, hate collecting them afterwards, hate waiting - just hate it!

Ah well, vent over!
Until next time,
Eleanor.

W catch up!

And so we come to W's grand update!

It's all been rather busy round here so I haven't had a chance to update after I said I would on FaceBook - but now here it is!

I came home from my sister's wedding to W having a few problems with his skin and so have spent time picking out cleansers to just help keep this increasing oil under control and showing him how to clean his face carefully. Phad problems with his skin in his teenage years and although I didn’t really and W takes after me generally with dry skin and sensitivity to soaps, he’s clearly changing and if you can control it before there’s a problem his teens should be much easier on that front.

What a contrast – toilet training T and skin care for W!!!

W couldn’t possibly let N have all the limelight with injuries and so needled T to the point of total frustration who threw the closest thing to hand – some car track with really sharp metal points where they join. These hit W in the top of the foot and punctured the blood vessel there. And so, only the day after N’s accident I was dealing with more blood, again on the carpet and tiles! W, naturally, had to hop in circles to show me how sore it was so we had nice circles of blood on the floor.

While I’m putting pressure on W’s foot and trying to mop up a little of the blood T decides he needs the toilet – and as typical for kids just toilet training, suddenly loses control – and adds urine to the blood on the tiles! Just in case Mummy hasn’t enough to do!!

So the kids were successfully banned from any more bloody incidents for the next few weeks!!!

W’s doing well in most areas at the moment but has decided to continue the family reflux saga. He’s complained of problems for the past year, which I’ve sort of pushed to the background, dealing with T etc. I shouldn’t have done that because now he’s in a bit of a mess.

He’s back on medication, still having problems, occasionally having some blood come up from oesophageal irritation – and just to add to the fun his mystery cardiac thing which we never really got to the bottom of last year – seems to be linked with his reflux episodes. For those who are medically minded it seems to be irritating the vagus nerve as it washes around, causing a SVT episode – so the racing heart is actually a response to the slowing heartbeat first off. It’s now causing a tight chest and shortness of breath, like an asthma attack. So, with a big sigh and a heavy heart, he got referred to the surgeon the younger two have seen and had an initial appointment on the 18^th of August.

We’re not necessarily anticipating surgery, just looking at an endoscopic examination to see what’s going on in there so we have more info to decide where to from here. It may be that medication will control it – but I’m not holding my breath as the younger two had damage despite meds, meds have never fully controlled it for W, and high doses over long periods also carry risks – and a standard type dose isn’t working for him at this stage. Of course, even if meds control damage but don’t stop the cardiac things then they will need further investigation – and if it is purely reflux then that’s a good reason in their own right for further steps to be taken.

After 11 years of reflux and all it’s miseries I am heartily sick of it and wish it’d just go away and leave me and my kids alone!!!

But I am constantly proud and amazed at the wonderful young man W is growing into – although his favourite game at the moment is brother baiting – but he’s learning that new and improved T fights back! I’ve had to put T in time out for punching W lately! W will happily go the extra mile for T on a regular basis – including helping with toilet training and even wiping…how many almost teenaged boys can you say that about?!

Addition to all of this - the surgeon seemed to think with W's history and the length it's all been going on for that he will need a nissen fundoplication just like the other two.

He's booked W in for an oesophagoscopy under general anaesthetic on the 10th of September to take a look and to take biopsies, checking for the very remote possibility that allergic oesophagitis instead of reflux oesophagitis - apparently about 20 % of supposed reflux cases are actually allergic in origin and so he needs to check this instead of going straight to surgery.

It's a quick procedure - T did it a bit before he turned 3 and I blogged about it then - and I'm not too concerned about that part of it.

W brought up fresh bright blood in his reflux this morning, an effortless 'spill' so the bleeding is clearly not from vomiting straining something but from reflux burning and damaging his oesophagus lining.4-5 times in as many weeks - not good! The big concern with this is that over time that burn can cause changes on a cellular level in the oesophagus which can lead to cancer later on. In the case of children with long standing reflux this cancer risk could come home to roost in their 30's.

The guess with T's persistently low iron levels was that he would have been bleeding due to his reflux - it was ulcerated inside after all, but we never saw it. W says when he brings up blood he often feels like something's being stripped off with it and that it really stings. It's rare to have pre-cancerous cell changes in a child's oeophagus but it does happen and if that's the case with W then the biopsies will tell us that too. He has been refluxing for 11 years now so anything is possible.

This morning was the first time P saw the blood and realised how bad this actually is for W - all a bit sobering.

So wish us luck for the 10th of Sept when he goes in for his scope. Only 16 days to go!

N catch up post!

I said I'd try an catch up on where the kids are at right now!
W sees the paed surgeon tomorrow so once I've had some thinking time after that appointment I'll do a W update.

So N's turn today!

We took him to see T's paed a few months back as she deals with a number of kids with ADHD and with N's growth issues, eating problems and the fact that these medications are strong, we thought an over all paediatric view wouldn’t go astray. So she’s scored another patient – and changed everything round on him. He switched from Ritalin to dexamphetamine which seems to control things better for him over the day with fewer peaks and troughs which were hard for everyone. It also doesn’t suppress his appetite anything like the Ritalin did! She also couldn’t believe no one had helped us with his sleep problems – often still awake at midnight and throwing tired little child tantrums around 3pm! So he is now on something to help control the hyperactivity in the evening too – and usually asleep around 9pm so we actually have our evenings back as he now stays in his room when he is awake!

As a result of all these changes he has gained around 500g a month for the past 3 or so months whereas before he’d gain a little, lose it, lose again, gain again, lose but be further ahead just etc – so it’d take him around 3 months to cement any kind of weight gain. He’s also grown a fair bit in height although he’s still small for his age but he is now in 5 year old sized clothes now! Just as well as T is in 3’s and growing…

His eating has improved but still slow and difficult and he’s still on all his supportive high calorie supplements so that’s another issue to bring up again with the paed.

N, of course, is still a total live wire and gives us a run for our money! His most recent highjinks was a quite serious fall – from a pile of cushions, inside, hitting part of the lounge suite…he’d piled them up on the arms of the chair and they’d toppled over and he managed to hit the back of his head, not too far from the end of his skull – any lower and it could have been really serious.

Heads bleed…a lot…and he was on carpet – but we got him onto the tiles quickly. When I stopped the bleeding and checked it out it looked to me like it was going to need medical attention – if for no other reason than he was very shaken and I was concerned about concussion. Of course it was a totally foul, wet, gale force winds, Wellington day and the police were warning that driving was dangerous.

I called the GP who said to take him to the local, small hospital offshoot – basically accidents are an After Hours attended by GPs. So we went…and waited…and waited…and waited – for 3 hours! When the nurse cleaned up the cut I was shocked – it’s over 2 cm long and almost the full thickness of his scalp. When she moved hair out of the cut, the sight was such I felt sick – and people who know me know that doesn’t happen easily!

So the doctor had to staple N’s head shut – 8 staples in all and we had the joy of having them removed a week later. The poor kid was clearly concussed – he barely moved or talked during our 3 hour weight, not even to fidget in his chair and trying to get through to the medical people how out of character this was for N was virtually impossible. He was still very pale, shaken and his concentration span was clearly affected the next day as well – but he was dynamite 2 days after the accident so we figured he was feeling much better!

New Zealand is in the grips of the Swine Flu pandemic, like much of the world. Some genius at the hospital has obviously never heard of infection control as they decided that the best place to seat those with flu-like symptoms was right next to the children’s play area. I cleaned their hands regularly with anti-microbial stuff and we seem to have dodged that bullet again despite there being 3 people come in while we were there, wearing masks but at least one discarded it on the floor!

So that’s been N’s latest event! As T wisely pointed out the next day “Mummy say no climb cushions. N do it. N hurt.” Maybe, just maybe, somewhere in their brains they might realise that Mummy knows a thing or two…nah, don’t delude yourself!

While we dodged the H1N1 virus risk at the hospital the kids have all been pretty sick in the last week and I suspect that we've finally fallen foul of the dreaded bug!

N was an absolute trooper when the doctor took the staples out - and earned a lunch at BK as a reward. He also got given his staples - and the staple remover to add to his collection of medical paraphernalia. He got given the staple gun, minus any extra staples, after they closed his head, and he's still got a lot of stuff after his reflux surgery.

So that's my fireball N updated! I'll be back in the days to come to update the other two.

Long Time no write...

Ah dear,
All my good intentions come to naught - again!
Such a long time since my last update, people will have given up checking here!

I have been busy, if that's any excuse!
I've been off overseas to my sister's wedding in the UK - 13 days of no kids, sleep ins and being able to be a grown up - I even got upgrades to Premium Economy for 3 of the 4 long haul flights...now THAT'S a way to travel!
Granted while I was away various problems happened at home including a surreal experience of talking to P in NZ while I was in Oxford, UK and he was on the floor fiddling with the dishwasher which had broken down!

Then I was home for a week before P headed off to the US for 17 days for work - both his company and my company Little Tom.
So I was solo parenting for a while, as well as picking up the threads and dealing with all the behavioural fall out of so many disruptions to the kids. Now P's been back for a few days things are calming down - but all the kids are sick, possibly with the dreaded H1N1 flu.

I suspect H1N1, despite true flu symptoms, largely because they all have deep hacking coughs, very heavy colds but the bug has totally wiped them out and hit incredibly fast.
W, our toughest nut and healthiest, started getting sick on Wed evening, cheerfully sick on Thurs and in bed all day by Friday! He still looks like death but his energy is returning.

N, who was also going through another major non-eating fad, is about a day behind W - but is still very wiped out. We actually forgot to give him his ADHD meds 2 afternoons in a row and only realised when he started to get on everyone's nerves around 5:30 - 6pm! So that's how lethargic he is!

T only started to come down with it last night and has been coughing so hard he's been retching. I was up 5 times between 12:30 - 6:30am last night. Thankfully because of his tube we know we can keep him hydrated and fed, although with last night's retching I slowed his feed right down to 50mls/hr from his 80ms/hr.

But they don't usually get sick all at once, they like to play bug tag! And they've all got sick fast and heavily so it feels to me like something they haven't had before.

Anyway I'll try an update on all the kids indiviually as I can. W has an appointment with the paed surgeon on Tuesday as his reflux has kicked into hyperdrive again - to the extent he's been bringing up blood on occasion so I'll do a full update on him after that!

Anyway - will be back later as time and sick kids allow!

So much to do...so little time...

I haven't been back here in a while - so what's happened?
T is 4!! Good Lord how did THAT happen??
N's gained weight, lost it and gained it again - and so the yo yo continues
W just keeps on trucking! The soccer season has started with a vengeance - won several games lost one big time and this weekend's one was a beautiful illustration why artificial turf and Wellington wind really don't mix! The wind would get to the ball before they did and blow it in the other direction...still, they won!

This week is appointment roundup - we did the GP for my preferred, controlled weights last week - so Tuesday is the community nurse, Wednesday N gets his new glasses (finally), Thursday is the Dietician for T and Friday is the Speech Therapist for T!

So I'm sure I'll update at some stage in all that.

T isn't doing so well any more. His eating hasn't really improved - I went back over his old food diary entries pre-op and his 'bad' days were worse than his 'bad' days now, but his 'good' days pre-op were better than his 'good' days now.
To add to it all he hasn't gained any weight or grown over the past month, after all his meteoric rises post op!
So I can't see the tube feeds being weaned down any lower, nor would we want to as he's been sickish repeatedly, tired, out of sorts etc and as it's winter I can't see that improving too much.
Just in the last 6 weeks he's had a bout of croup, a cold, an infection round his tube site and then another cold - so it's not been the easiest for him to gain either.

Anyway - I need to change his feed over and get to bed so I'll update later.

New month, new centile...

Yes, you read that right!
T is moving on up...
He got weighed again on Friday and according to the doc's scales and measurements he is now 13.5kg and 95.5cm tall.
That places him on the 5th centile for height and weight and gains of 500g and 0.5cm in the last month - doesn't sound like much and it's not the meteoric rises we had before but over the past nearly 3 months since his op he has gained 1.5kg and grown 1.5cm so that's significant.

Add in the fact that he's been quite sick and we've decreased his overnight feeds a little and it's all a good trend!

He's not really eating any more than he was pre op and I was in a bit of a funk about that in the last week or so but then I sat and thought a bit.

Amazing what can happen when you actually calm down and think...
He had 6 weeks on purees and in fact he had more like 8 as he slowly weaned off them.
He's only in the last 3 weeks or so managed to go most of the time without his solids getting stuck on the way down at least twice a day. When things got stuck it caused him a lot of pain so not really helping to learn that it's safe to eat now.
So he's really only had about 3 weeks where there hasn't been a frequent risk or experience of pain when he eats.

So we're in the food is fun mode and that's the most important lesson for him right now.

The dietician wanted us to decrease feeds from 1 litre overnight down to 800 mls overnight but as I said in my last posting he wound up washed out, exhausted and teary at 800 mls. He's not so bad at 850mls so I'm working on a total of 850mls in 24 hours. Some days he drinks 150 of that in 50 mls bits, some days he only drinks 50 mls. So I just deduct what he's drunk from his overnight total and feed him accordingly.
I'm not completely happy with his energy levels on 850mls - he spends a fair amount of his time "laxing" - his word for relaxing, which consists of cuddling down with a blanket, cuddly and dummy on the couch - but he's got to have the opportunity to try to get hungry and eat.

When the nurse weighed T he said that normally they like to see a gain of 1 kg over a month and T has only gained 450g in a month, but that he'd be happy with T's gains as he's such a busy kid.
I think it shows how there is a gap between the feed levels and his eating levels and required calorie levels but we've got to try and see what he can do on his own too.

But he's a changed child from pre-op and it was all so worth it!

In other news N is not doing so well - he's down a kg in the same month although he has grown - so not looking the best!
However we're hopeful that'll pick up a bit as we've seen T's paed for N and his growth and ADHD medication. She's changed everything around and he's now got something to help slow him down a bit at night as well as a total change of medication for during the day. This doesn't seem to supress his appetite anywhere near as much as the other did - he even ate breakfast 30 mins after taking it whereas on the other you had about 15 mins to try and cram something in!

So improved sleep (he's now out each night well before 10pm when it used to often be midnight) and better compliance - like actually stays IN BED, never mind in his room, and less appetite supression will hopefully result in better growth and weight gains for N!

T just had his birthday party this weekend but I'll post about that later in the week when I do a birthday update on that one just for him.

W just keeps on keeping on :-) He's growing like a weed and eating us out of house and home! I had to buy him new clothes recently as he was looking stupid in his ones - he's really shot up again in the last couple of weeks! He's doing a bit of the snotty pre-teens mixed with Asperger's makes life interesting, but he's doing nicely over all. Gives me hope for the other two that's for sure!

I'll post again later in the week for T's birthday!
Eleanor.

And the wheels keep turning...or is that spinning...

This is soooo frustrating!

We saw the dietician 2 weeks ago and she wanted to reduce T's overnight feeds to get him to eat more. We weren't keen and gave him a few more days on real foods rather than purees to stabilise.
Then we had a night where he point blank refused to eat and just screamed to be put to bed and hooked up to his pump!

We aren't keen on him getting 'lazy' about eating so since then I've reduced his overnight feeds - first by 100mls, then 150 then 200 mls.

He's really not increasing his meal intake though and what he does eat is still tiny - today was a big whoo whoo day - he ate an entire weetbix for breakfast! That gives you some idea of where we're at!
He ate a great dinner last night - but has only had the weetbix all day today.

T has been getting tireder and tireder lately and eating less and less. His weight is down by 300g since we started reducing overnight feeds - and he's not eating any more than he was. We've tried for 2 weeks but he's just declining again.

We even had a couple of nights where his tubing came apart and the bed got fed and not him - and he still wouldn't eat breakfast or morning tea when he should have been famished!

Thursday we had a total meltdown, I'm exhausted tantrum from him in the car while W was at music.
This morning we were back to non eating, lying on the couch or playing quietly. When N nicked some of his toys he went and hid behind a curtain and cried. He spent most of the morning crying at the drop of a hat. It was like some kind of totally awful flashback to the way life was pre-surgery.

I gave him a bottle of formula to drink and after 75 mls he was happy, chatty, stopped crying and semi bouncing again so he's clearly just not getting enough nutrition.

So this weekend we have a lunch with my family on Sunday and a lunch with DH's family on Monday - and church on Sat night or Sun morn. I've had to re-organise everything because he's got so tired - and my family have changed to Sunday lunch instead of Sunday dinner. He can't manage church followed by lunch the way he is right now.

I think we'll have to go back to full overnight feeds, at least for this weekend - all these lunches stuff up his afternoon sleep and if he's low in energy then he can't cope without his sleep.

I hate to go backwards, I'm really not happy about this. But I also can't take an upset, overtired kid to family lunches to spoil it for his siblings and everyone else.
I'm fed up!

Then to add to it we have a mystery...he's had these persistently low iron levels for well over a year now, despite ever increasing the iron dose he's on.

The paed's theory was it was bleeding from the reflux and so should be all good now. In fact she told me that unless he was okay about blood tests not to bother with re-testing. I did it anyway and just got told that his iron levels are half what they should be! He's now taking more than the usual daily dose of iron supplement for his age - and that's age not weight!

What's causing the low iron? Is the low iron causing some of the difficulties in his feeding? Is the cause of the low iron causing problems?

This was supposed to be simple - do the surgery, build him up, teach him eating doesn't hurt (and because he's always been interested in food that wasn't supposed to be taking too long) and then we're home and hosed. Nah, T has to be T I guess.

But I'm just about ready to tear my hair out here!

And The Fun Continues...

And it gets even more fun!
I went to check on T last night, make sure his tubing was together, see how much milk was left in the container - how much longer til I can go to bed etc. He sat up and started retching!! Full blown, hard retching! It was 11:45pm so not dinner causing the problem.

Stopped the pump, tried venting his tummy - thinking maybe lots of air making him feel sick but no, checked what was left in his tummy - thinking maybe for some reason he wasn't processing it fast enough and was getting over full - very little in there.

So we settled him back down - and reduced the pump flow from 90ml/hr to 80ml/hr.

Thinking about it this morning the other times he's been at 90ml/hr the tubing's come apart at some point in the night. We'd reduced him a little and been increasing by 5ml/hr for the last few nights to see if the pressure was causing the problems. So maybe his tummy can't handle that flow rate?

The trouble is, he needs to get 900-1000 mls over night. It's supposed to be given over 10 hours. You simply can't do it in 10 hours if you go below 90 ml/hr. If it runs too long in the morning then he's fuller and won't eat breakfast. Trying to start it earlier is a mission since we're already starting about 15 mins late usually.

He hates having his tummy cleaned at the moment which has to be done daily so I'm just chucking him the bath every night. But he screams yells and fights! So dinner tends to be late and so it goes on...P's had a lot of rehearsals lately so it's been just me doing the whole bath, dinner, bed routine for all 3 - and N always creates every inch of the way!

The volume at a slower rate means I have to stay up later to change the containers over. The dietician says the formula can only be hung for 8 hours at a stretch, the Nutricia people say 4 hours at a stretch for Neocate/Pepti Junior. Someone has to get up which ever way you cut it with a 10 hour feed and max 8 hour hang time.
What we're doing is a 4 hour hang, ending around midnight and then a 6 hour hang - with freshly made formula to up the ante.
So I'm not getting to bed before midnight, often 12:30 - 1am and then having to be up at 6:30 - 7. But I don't want less sleep!

If I get up in the middle of the night I always have big trouble going back to sleep - P's always done the 2am feeds when the kids were babies. But he's out with lots of late rehearsals at the moment so it's not like he has the option of going to bed early to compensate for the broken night - and he's got some on going health issues right now so he doesn't need to chuck sleep deprivation into the mix to confuse everything. If I got to bed early to make up for it, then N, who often doesn't go to sleep until 10:30 or so, will have run of the house when P's out and he WILL create trouble.

So we're sort of stuffed right now. If I complain about how tired I am then that just pushes them along with the 'see, be tough, he has to eat more, then we can reduce the volume overnight' theme. I'm determined he needs to be given his own time - so I guess I just suck it up right now.
But this is just sooo tiring and frustrating.

We'll give him the weekend and then try 90ml/hr again - hopefully it'll work this time!

Quick Update on T

So, here's where we're at - it's a bumpy old ride...
I spent yesterday feeling pretty down - according to the nurse T has lost 600g in the last week. I got him checked by the GP (we've been doing serial weights there since about April last year) and his last weight there was pre-op and he's lost nearly a kg in that time.

But...over that week in between weights from the nurse he had a really bad time with eating. I contacted the dietician and she was busy and so there was about 4 day delay in getting back to me - that'd account for some of it.

The nurse weighed him with a dirty nappy, jeans, singlet and long sleeved shirt on the first time and the second time with a fresh nappy and t-shirt and shorts. I've now weighed clothes, nappies etc - truely anal I know but I'm NOT going to be blamed for all of this! And those differences account for 300g of the 600g difference!

300g is still 300g and he didn't have it to lose so I'm really not happy. But we've also had a number of times when his tubing has come apart and we've fed the bed instead of the boy so if he's not getting his 'rescue calories' then that's not going to help the situation either.

The hard line approach of the dietician resulted in T just playing with his food, taking a few teaspoonfuls and lots of crying to the point of almost being sick, or doing a kind of choke thing on his food and then spitting out everything in his mouth.
So I'm now going to pretty much totally ditch her management technique. It's not the way I want to operate, nor is it doing T any good.

Yesterday evening and this morning T wanted formula, I wanted him to eat a couple of mouthfuls. He refused so I refused. He opted out entirely at that point.

Lunchtime today he ate well and then asked for formula. So I gave it to him. He said to me "See, eat, finish then milk. No eat, spit out, no milk." That's right buster!!

But he's got this real fear of being sick and on a number of occasions has backed away clearly scared "No, no might be sick". I just give him tastes on the tip of the spoon then, he can see it's only a very small amount, to reassure him. Sometimes then he eats the lot once he's be reassured, other times he doesn't.

I don't know and can't know how his tummy and he are feeling so I have to respect and trust him. If we push and push and he knows there's no escape and he's trapped into doing something that feels bad then we're going to wind up with a kid who is scared of food. We don't have that at the moment - and I don't want to go to that particular circle of hell. Been there before with W, not going back again.

The whole situation drives me crazy - but not so much on T's part but more on the expectation he's just going to be magically better now he's had the surgery. Monday will be 3 weeks post op - he had nearly 4 years of feeding pain and difficulties. It's not going happen overnight but it will happen - on his timetable. So long as his health and development are secure, as measured by his gaining and growing, I'm prepared to take his time on this one. Why others don't want to I don't know.

We see the surgeon on the 10th and the paed the week after and the dietician the week after that so hopefully in that time we can muster information and support for a plan to go forwards WITH T.

I knew it wasn't going to be easy but really, the reflux fallout is just so far-reaching, stretches as far as the eye can see...

Reflux is GONE from our house!

The reflux surgery has finally been done!!
T was excited to be finally going to the hospital on our ‘adventure’ – he was sitting in the car 30 mins before we needed to leave!!

While we were doing all the admission stuff he suddenly realised that this was really going to happen and got scared and started to cry. We wound up doing puzzles on the floor for quite some time to keep him happy…

They were late taking him into theatre which really didn’t help matters and when they came to take him away he totally flipped. He did his ‘go red in the face, rigid and scream’ thing that he does with such skill and style! So I wound up holding him for a while and then they put us both on the bed to go to theatre so I cuddled him close. He calmed a little but then flipped again when they put the mask on his face. The anaesthetist and the nurses were amazed at how strong he was, despite his size.

But he went to sleep quite quickly and it wasn’t as difficult emotionally as it was with N. Maybe that’s because this is T's second anaesthetic, maybe because it’s my 3^rd time to theatre with a kid I don’t know.

Anyway, the anaesthetist and the surgeon both commented on how stable T was during the surgery so it seems they weren’t expecting it. The surgeon’s comment of “Oh boy, did he need that surgery!” shows all was not well in there – no wonder the poor kid wouldn’t eat! Gross reflux and crusting on his oesophagus apparently!

It's wonderfully vindicating that the surgeon said he clearly needed the surgery and that there was absolutely no doubt about the diagnosis. He'd been unsure that the reflux was really bad enough to warrant the surgery but we'd tried everything else and the impacts on T's eating and health were just too great to not do this. But it's also vindicating because one doctor we'd seen very early on in T's life suggested his eating problems were our fault and that there wasn't actually reflux at all. Horribly stressful and made things difficult for a long time to actually push hard enough to get what T needed - so yah boo and sucks to that doctor!

The surgeon did say he thought for a split second about not putting the tube in but decided to go ahead. I'd have been spitting tacks if he hadn't! This is the guy who said in retrospect he should have put one in N!!

But we did have problems getting him off morphine after the surgery. He was actually discharged while he was still receiving iv fluids and 0.2ml/hour of morphine. So I'm keeping on top of the pain meds at home and giving him either pamol or ibuprophen before he starts crying with pain, more when he gets even quieter.
He’s improving on the pain front – today he’s only had 2 lots of paracetamol and 1 of ibuprophen so he’s definitely on the up!

We got home on the Thursday afternoon. T was pretty sad, sore - and frustrated with only purees etc - he's told me I'M NOT HIS FRIEND ANY MORE!! But we're not going to charge onward without dietician approval. We had problems with nausea after eating in hospital and I'm not keen to continue that at home! I stuffed up with N after his surgery and panicked with his weight loss and started to really push him with food. End result he was getting things 'stuck' in his wrap and we're STILL fighting the food war with him 15 months down the track.
T has the tube and so food is for fun now - we'll get him there in tiny baby steps. He has NEVER eaten enough all his life and it's going to take time, lots of it.

But T is managing about 5 teaspoons of puree 3 times a day and drinking his 5 lots of 50 mls during the day rather than having to tube it as the dietician suggested. I figure that the final aim is oral feeding so giving those bolus feeds in a bottle is okay - we're making sure he does complete it in his 15 min time period. We told T that the purees are 'special tummy food' rather than baby food, bit insulting for a nearly 4 year old! I've got a whole array of flavours so HE gets to choose what he wants for each meal. T is normally so accepting of foods he can't eat "T friendly?" is his routine question. But he just wants a bit of brownie and a full bottle. Poor T "hates" me because I can't fill his bottle to the top, he can't have the bread we bake fresh each morning, or his beloved choc brownies which are essentially his life support system! The kids really didn't help the other day - tucking into the brownies in front of him - so I read them the riot act on that one!!

I've hunted out the tiny 120ml bottles I used when the kids were newborns. I used them then to make ME feel better about how little they were able to drink at a time so I figure it might help T too - 50mls looks so pathetic in a 250 ml bottle!

He’s also managing 70mls an hour with the feeding pump overnight feeds now - as I wrote up my feeding notes for the dietician, after lunch yesterday I noticed that he's getting 1 litre of formula a day now. His normal before the op was 500-600. The Friday before the op he drank 900 mls (a hot day!) and I was up for a couple of hours in the night with him crying in reflux pain. Yet now, other than us having to stay up to change over the feed container at the 4 hour point, he's sleeping well.
Clearly a surgical success!

We managed our first overnight pump feed last night without too much of a problem - he was full of air and had to do an emergency venting of his tummy as the feeding pump tube kept popping off his tummy tube! Would have been funny if it wasn't midnight at the time!

The second night wasn’t such a good night - seems we may be missing a bit of tubing - the tube from the pump went into his feeding tube no probs the first time - but not since then!
We really struggled to get it in the second night and I wasn't confident about the connection so went and checked around 10pm. The tubes had parted company - milk flowing in one direction and tummy contents in the other...
Poor kid was asleep so we woke him, changed everything, noticed his tummy was really puffed up so tried to let some air out - and had a tummy volcano - not much in the way of tummy stuff but boy the pressure in there!

Then we just couldn't get the tubes to stay connected at all - so we pushed it in and put tape around it to hold it firm!!
Then in our sleep deprived haze Peter gave T a pamol sized dose of ibuprophen - 3.6mls instead of the 6! Would have been bad if he'd got it the other way round with the other drug - so I'll go back to measuring things in syringes in the evening and putting it in his room ready for use in the night so we're not bumbling round half asleep. But poor T was in a lot of pain quickly because he hadn't had the proper dose.

It is so sad to see him pale, hunched over and so sore and sad. But I keep thinking back to a few days before the surgery when I was up in the middle of the night with a refluxing, sad and sore T. This pain is temporary and a major step on the way to a happy, healthy, painfree T and I have to hang on to that!

But T is such a good, patient, accepting and adapting kid - he makes it easy. We saw the nurse after the second night's fiasco and she's given us long tubing to vent him. But she took off the dressing, cleaned everything out, fiddled with his tube - it all took a long time and he just lay there, whimpered occasionally but stayed still and let her do it.

I think it is the tube pulling that's hunching him over - it's quite long compared to the rest of him and quite heavy to tape up so it's often flopping out below his t-shirt. The surgeon did say the tube was going to be the bane of our life - and so it is! Roll on changing to a button!!
He's said 4 weeks - and I'll make sure it is! He said the dietician can change it for us so I'll confirm that with her or if the nurses can do it for us. We don't see her until nearly 8 weeks post op, but we see the surgeon at 4 weeks so if all else fails I'll get the button from the nurses and take it with us to that appointment and get HIM to change it over!

Despite being a little hunched still T has figured out how to "hurry" slowly when he needs to - like being asked to leave W's room so he grabbed a few of W's toys and scurried away! I figure he's doing okay if he can be naughty!

He goes to the doctor on Tuesday to have the nissen stitches out and then has to go back again on Friday to have the stitch holding the tube plate out - and then we enter the wonderful world of cleaning, turning etc. At the moment all you have to do is lift his shirt and he starts screaming "Don't touch it, don't touch it!"

But we're getting there! I think it's easier with T because we've already got N through the same surgery, just not a tube, so we know how to run that recovery. And T was ng tube fed at home for about 3 weeks when he was 3 months old so some of the equipment, terms etc are the same. I thought the pump would be the hard bit but in fact that's easy, it's all the air in his tummy that's complicating things. Some bits are just reverting to our "normal" - sterilizing bits, constantly washing hands etc - we've had 3 prem babies who were all bottle fed from the start so it's funny how fast you just slip back into it!

We’re learning more about the wind issues anyway – last night W read a story to T while I vented the tube so he’d lie there quietly, so we’re working out systems.

Anyway, that’s where he and we are at! If anyone wants pictures – I did take them, I haven’t transferred them to the computer yet but I will later – so let me know….

Thanks for all your well wishes, thoughts, prayers and everything else. Tuesday will be his first trip out since he got home, and Thursday will be our first attempt to transport him with the pump as we’re having dinner with my parents. If we have to start his overnight feeds late or they get interrupted then that will stuff up breakfast, his morning feeds, then lunch etc. So we really need this to work. Once we’re not blundering around with T and his pump (probably all be much much easier when we get his button) then we can start to think about leaving him and going out somewhere – but we have to be sure enough we know what to expect before we try training grandparents on how to do things! So P and I won’t be out and about socially for a bit, or at least not together. But T has travelled a long road and we’re not mucking it up now!

Just to add to all the fun W got bitten by the neighbour’s pitbull cross a couple of days before T’s surgery so it’s been all go round here! He’s healing up quite well though – lots of dressing changes and medical stuff happening!

Thanks,

Eleanor.

Still here - very busy!

Just a quick post - hopefully more tomorrow!
We started back on schoolwork last week so I have a little less free time, W got bitten by the neighbour's dog, and T had his surgery on Tuesday 3 Feb!
So all go and as usual there's the odd bump in the road...
Will try and post tomorrow.
Eleanor

And it's birthday time again!

So my main mischief maker is turning 8 today!

8 years ago today – 22 Jan – it was a public holiday here in Wellington in New Zealand. I should probably be thankful because I got the registrar on call instead of the OB who was determined, whatever the cost, to prolong the pg – even though I was clearly becoming sicker and sicker.

In the end the on-call specialist decided that with markedly hyperactive, a big BP jump despite the fact it wasn’t high high, the swelling I had and other signs – that in fact I did have pre-e, that my kidneys and liver were starting to fail despite the standard blood tests still being okay – and that I needed another emergency c-section.

N arrived at 8:29pm at 36 + 3 days and weighing 5lb 12 oz and wound up doing 3 ½ days in the NICU and most of that on CPAP.

He did battle with reflux, eating problems, failure to thrive and some developmental delay.

He’s had at least 2 good dices with death – when he was 6 months old and had a really bad bout of croup and chest infection. He was in the ICU and nearly had to be vented. They said when we brought him in he was indrawing so badly that his breastbone was touching his spine. He was so exhausted but would not give in, relax or sleep – he was totally focussed on breathing and staying alive! He had 8 days in hospital and 6 of them on oxygen.

Then when he was 3 he slipped off a rail he’d been swinging on and fell about 4 ft – head first onto concrete. When I rolled him over there was a dent in his forehead but that soon rose into a massive egg! Despite getting the all clear from the GP that afternoon he slipped into a delayed concussion that night and was so unconscious that even the ambulance officers couldn’t wake him. He came round in the ambulance and stunned the docs at the hospital by announcing that his name was N (full name) and his birthday was in January!

He had a lucky escape that time – although suffered double vision, headaches and forgetting well known words (like colours) for about 3 months after the fall.

These days – he is an amazing kid, amazing great and amazing frustrating!

Reflux was finally resolved when he was nearly 7 with a nissen although we still struggle greatly with eating and weight gain.

His ADHD was diagnosed at about 6 ½ and medication has made a big difference to him and all our daily lives although we still struggle with behavioural aspects.

As I said to P a few weeks ago N is one of those people with the strength, energy, drive, determination, intelligence, inquiry – and impulsivity – to change the world we live in. He is going to be a mastermind evil genius or one of those figures who stride across the world stage in some form or other. We unleashed him on the world so it’s our job now to leash him in just enough to keep him on the good side! It’s going to be a bumpy ride – but boy, you can never say life with N is boring!!

Wheeeee woooooo

Yes, that's right! T has loved emergency vehicles since he was tiny (alright then, tinier!)

As the day of his operation is coming closer and we're all suddenly realising what he won't be able to do for a while afterwards - eat his beloved brownies, eat his hehe ray ray (- what he calls cornflakes because of course it's not a kangaroo on the packet but a DOG silly!), jump on the new trampoline, play in his sandpit (sand in healing incisions...don't think so!) or even be too easily transportable - we decided to try and pack in some fun things for him now.

P sings with someone who is also a volunteer fire fighter and had said a number of times that we should organise a time for us to bring the boys down to the station - so we did it this Saturday.

He showed them round all the different compartments and what all the things do. Unsurprisingly N was taken with the tool called a Hoolahan (named after the man who invented it) but they all call it a Hooligan tool - axe/crowbar/metal rod/whatever other wrecking tool you can name! N's eyes lit up at the idea of being ALLOWED to wreck things - a career plan change might be happening for him, especially when he discovered that so long as you are strong enough to carry the gear there is no height or weight restriction for entry into the Fire Brigade here.

They got to get the hoses out and even spray a little. W got really into that...T did the typical thing you see with little kids and garden hoses, right up to the face and then started to fiddle with the triggewr part - that was before he flicked the switches and let them play...

They saw the gear they'd need to use if our hillside went up in flames as well.

Then they got to go inside and try on some of the gear - W had a ball in a helmet and coat carrying round a hose to show that he could take the weight. N nearly dropped an oxygen cylinder!
T looked fantastic in a proper helmet (he'd insisted on wearing his toy one to the station) but declared the boots "too big Mummy!"

Due to N's interest we learnt how the radio works and the different stations called out for different events.

Then we went for a ride! Sadly he wasn't allowed to use lights or sirens because he wasn't on an official job but did let off a whoop as we pulled up outside the station.

He showed us how sprinkler systems work and the benefits and negatives of smoke detectors.

We were there for about 90mins and the boys all had a fantastic time!

I managed to take a number of good photos and have edited and printed them already and put them in T's photo album of current or important events to show people as a talking springboard. He'll thrust them under the nose of anyone prepared to stand still for a minute!

So hopefully when all the post op restrictions come into play he'll have some cool things to look back on - it's only 21 days away now!

Welcome 2009!

And a Happy New Year to you all!

Wishing health, happiness, wealth and gee - let's go all out and wish for world peace while we're at it too :-)

As I went to bed on New Year's Eve I pondered what the new year will bring us.

As I said to P - we know some of the challenges ahead - and we know some of the joys too - one of my sisters is getting married this year and the way it's worked out only I will be going as it's in England but it'll be only my 3rd break on my own since having W. The first was accompanying my mother for moral support while my father had surgery, the second was a Parent to Parent break weekend which was unfortunately the day after I dislocated my shoulder so I didn't really appreciate it as much as I could have done!

T's surgery and learning to eat are a big challenge, like many these days we're facing some big financial challenges.

P's still having random rashes, foot pains etc after the nail incident last year - and we really need to get to the bottom of that one too.

We are working on behaviour modification for N, and scarily I'm going to have to start reading up on Asperger's teens as W is clearly heading that way and already struggling a bit.
Hopefully Tau Toko (an organisation which helped us so very much when the AS was first diagnosed) will be able to help us out soon again - been on that waiting list for nearly a year now.

Anyway, since we have officially ended the holiday period - or what I called the "No number days" when I was little, I want to wish people a good new year with as few big surprises as possible!

Explaination - No number days were the days between Christmas Day (which everyone knows is the 25th!) and my birthday on the 4th of Jan. Those days were always so laid back and relaxed and no one ever seemed to look at the calender that for a while I actually thought those days didn't have dates to them, we just floated seamlessly along in summer relaxation.
Of course it all ended on the 4th because we can't lose track of a birthday now can we??!! :-)