Reflecting on...

Today is 22 February 2012.

To many it is just an ordinary day - especially to those who read this blog from overseas.
But today marks an incredible day in New Zealand's growing up, growing into itself.
22 February 2011 was the day yet another earthquake hit Christchurch, our second largest city - or it was.
But this time, unlike Sept 4 2010 or the Boxing Day quakes of 2010 or the June 2011 quake or Christmas Eve 2011 quakes, this time people died.
185 people died during or as a result of the 22 February 2011 6.3 earthquake.
'Only' a 6.3 in some ways, but the g force involved was apparently unparalleled in previous records.
Buildings crumbled, people's lives ebbed away and others lives crumbled.

Pictures of the buildings and streets look like nothing I expected or thought to see in this country. They look war-torn, and feel like they belong somewhere else.

Over the past 18 months those brave, hardy, incredible people of Christchurch have endured over 10,000 earthquakes. Thankfully today, it seems, Mother Nature has been a tiny bit sensitive and left them alone.

Today I had to explain to my youngest why flags were flying at half mast (sadly it was again as they did for the anniversary of the Pike River mining disaster which NZ also endured in 2010) and the surreal images of people standing stock still in public places, as if in frozen animation, for 2 minutes silence at 12:51pm - the moment when the quake struck.

We all say Kia Kaha Christchurch, we all stand with you, thinking of you, caring about you.

But what does that mean and how can it actually help?
I know I can't imagine the heartache, disruption, distress, tears and at times abject misery of those who have lived through this. The reality of swarms of earthquakes through the night waking the household and distressing children, the patchy power and water, the roads like a ski run with all the things to avoid can only be known to me through the pictures and accounts of those living it.

It has been a hellish year for those living there - and very definitely the country's thoughts, prayers and hopes are with you all. I can only hope that that does mean something, does support in some way.

But what good if any can come from this?
Christchurch will rise, phoenix-like from the ruins, the dust and the pain. But the gaps - in people's lives and also in the nation's history with the loss of so many many heritage buildings and churches - will be huge and far reaching.

I think the country has learnt and is developing on and through this experience.
We are a more mature and supportive country. There may be compassion fatigue - but not when it comes to our own. I know people have grumbled in the past about the costs of sending teams of people to assist other countries in their disasters - but not now. Not after we had hundreds of Australian police sworn in to help Christchurch, teams of fire-fighters from Australia to help in the aftermath and particularly the very rapid response of trained and ready international USAR teams. USAR are Urban Search And Rescue - and that rapid response of both our own around the country and those around the world are responsible for the fact the death toll wasn't higher.

As a country we are learning that, in fact, nowhere can consider themselves safe from seismic disasters and so we had better plan.

In addition to a new, strong, beautiful Christchurch which will rise, there will be a change in the way we build all around the country. This all on it's own will save lives and give some meaning to the horrors Christchurch have lived through.

But on a much smaller, local scale, we can stand with Christchurch by learning their lessons and being prepared. Here in Wellington the reality of a major earthquake is a fact of life, like LA or San Francisco. People are supposed to be prepared. Most of us are complacent - but not any more.
We personally have our basic earthquake supplies anyway.
But it is talking to Cantabrians which lead to a lot more practical thinking on my part.

Now everyone has a torch by their bedside in case of emergency - earthquakes throw a lot of things around and injuries can occur in the dark as you rush to panicked kids.
After post earthquake discussions we now have the key to the back garage door taped to the underside of a shelve in the kitchen. The earthquake supplies are in the garage - and the main door is electric.
People found that electric doors wouldn't open without power. Ours at least has a manual override - so long as you can get in there. People found roller doors got warped and wouldn't open - but we can hand crank it with great effort from inside and so should hopefully be able to get the car out.
In the aftermath of the February earthquake people found petrol stations had power for pumping petrol but no eftpos as the phones were out. So cash was needed to fill the car - which you needed to get more water supplies than you could carry a fair distance. So we have a small store.
Parents I know commented on difficulty in getting medication and specialist formulas for their children after the quake. The roads were difficult and the supplies coming through were those needed urgently for everyone. I know people were pooling resources of things like hypo-allergenic formulas to keep everyone going until supplies could return to some semblence of normal. So I have 5-6 cans of T's Neocate Advance in our supplies. That's several weeks worth for him.
I also have a small supply of N's ADHD medication.
Not only does the idea of a hyped, panicked and unmedicated child fill me with horror, I can't imagine how I'd stop him running through the broken glass, crockery and contents of the pantry!
This supply was very hard to build up as there is no dispensation apparently to get extra supplies of a restricted drug so I only hope I have enough to get him through. Many parents commented that prescriptions were difficult for a good few weeks - doctors' offices might have been closed due to damage, the roads closed or the doctors busy helping the injured. If you don't get to see your usual doctor you can have problems getting a script if they can't access some kind of computer system.
But a photocopy of a script for your regular medications is a good idea.

And so these are ways as well that we can stand with Christchurch, make their suffering not be totally in vain. Learn the lessons so that when, as is inevitable in this beautiful but moving country of ours, it happens again - it isn't so agonisingly catastrophic.
There are aspects of a disaster we cannot alter - but let us be prepared in the ways we can be.
Let us learn from the examples of Christchurch - and may they and those who died last year be always in our thoughts.
We can't change it but we can learn from it.

Kia Kaha Christchurch. Your path in the past 18 months is simply unimaginable but we are with you and bolstering the Cantabrian spirit.

Rest in Peace all the souls who perished - 22 February 2011.

Inch worm, Inch worm, measuring the marigolds...

Inch worm, inch worm,
Measuring the marigolds,
Seems to me you'd stop and see,
How beautiful they are!

I have to apologise I have no idea where that song comes from - vague memories of school singing but it being a poem or story by Hans Christian Andersen somewhere along the line.

But it's relevant on two levels - firstly centimeter worm really doesn't work and we're talking height and weight gains here!
But secondly so often our life is bogged in stress, fire-fighting and major battles and so it's important to stop and see the marigolds every so often.

Also anyone who knows me and my death-ray fingers when it comes to gardening will be impressed to know about the only flower I can successfully grow is a marigold! This is coming from someone who managed to kill a cactus by dehydrating it...

So this post is definitely about appreciating the small things - and especially when they are cause for big celebration.
T was weighed and measured again today and he's gained and grown.
The growing's not so unusual - he's actually been clocking up a centimeter or just under a centimeter each month for a while now. But he's gained a kilo in the last month and this combination means he's now above the 10th centile line and in fact between the 10th and the 25th centile lines!
The doctor today even uttered the unimaginable words - "tracking nicely towards the 50th centile"!

This time last year he was clinging to just under the third centile and even then only holding there by his fingernails. His surgery in April last year was like an absolute miracle - going from considerable pain and dry retching causing further pain with any food or even tube feeds. He was restricted to purees and only managing very small amounts before he felt full. I was pureeing real food and freezing it in icecube trays like you do for babies and he'd only have 1-2 icecubes at a time. Food really was just to keep his mouth in practice and he was at least 90% dependent on his tube feeds just to survive.

Fast-forward to now - only 10 months later and he's gained 4 - 5kg in that time and grown in height hugely.
He's now only drinking his formula once a day and the next decreases in total volumes will come off his night feeds!
He's eating ever increasing quantities to such an extent we've finally ditched the plastic baby plates for his meal - because it won't fit on there!

He had an absolute first the other day when he decided he hated dinner (not that unusual really) and had a small snack instead. Normally the morning after no dinner he'll only eat his normal breakfast and there's not sign of compensating for a missed meal. This time he ate his usual breakfast - and came back for more complaining he was still hungry! This is a huge step forwards.
He also ate a bigger than usual dinner after swimming this week so he's starting to respond more rapidly to strenuous events with a larger appetite. These are, of course, things the rest of us take for granted but for T, are eating behaviours which needed time to develop.

And so the light is really starting to shine at the end of this awfully long tunnel for T. I'm almost starting to think we may have a tube-free existence around Christmas/early next year.
I'm projecting that far out because there are known factors which will slow down progress. The winter always slows things down. He gets sick, stops eating or doesn't eat much and so the gains aren't there so we can't decrease the feeds.
But the other factor is school.

Yes school!
T would have gone to school at 5 except staying at home meant he continued to get speech therapy which he wouldn't have got through the Schools Team but did through Early Intervention. Even if he had met the Schools criteria, which his SLT didn't believe he would as it's sooo much higher, he'd have to go onto the waiting list for therapy and so lost valuable time. So he stayed at home.
And then 'the gloopies' hit and his health simply would not have allowed school attendance.
I tried to teach him but he was using everything he had simply surviving and learning much was very difficult and slow.

Once he recovered from his surgery in April last year he was finally in a state where learning was possible but we were largely starting off with Kindy type activities as he'd never had the chance for that. He really has only had a max of 6 months of 'school' time so far.
I know I can't send a kid that far behind to an ordinary classroom - he'd be age matched with children in their third year of school and he's really not even reading. But I have some possibilities to investigate but my primary target is a semi-local Montessori class if we can swing it.

I have been really concerned with how slow his learning progress has been and wondering if he can cut it in a classroom any time soon.
But this week my writing-averse child suddenly started voluntarily writing.
No longer happy with asking for dots first and then joining them up and calling it writing he is spontaneously writing his own name with no model or even something to copy from.
Just in case I wasn't impressed with that he has taken that a step further!
He decided to make a card and I wrote the words he wanted in dots on the front cover. He dutifully joined the dots and decorated the front. He then decided he wanted to write the same thing on the inside.
So he carefully copied the letters from the front cover of the car to the inside of it.
This required him to remember the letters in his head, how they were written, the order they came in and where he was up to without an immediate visual prompt.

In terms of language development, visual memory and academic skills this is a massive jump forwards.
He missed 1 letter in his transferring of information and got his 'p' round the wrong way. He'd wanted to use a capital D but realised his letter looked more like a circle. Once he'd got over his initial "the card is ruined!" freak-out, he decided to just make it a small d instead as he could just put a stick on the side.
And so we have letter recognition and problem solving with it all.

And rapidly I'm not quite so concerned.

This has been a long time in coming - hard fought and tiring for both T and us.
Many are the hours I have spend worrying about him, his development, his health and his future.
I have trusted and hoped that I was right, that his intelligence would catch him up once the other road blocks were clearing - and it seems my gut hope was right.

And so we celebrate!
We appreciate the small weight gains, the 50ml decreases in feed volume and the wonder that is the effect of 'feed the child, feed the brain'.

There is still a long way to go, but the end is appearing on the horizon line.
Now is a good time to stop and see how beautiful the marigolds are.

Who cares HOW you get it in?

There are many things going on in our lives - and I haven't blogged in ages but this issue is very dear to my heart and is raging through various groups I'm involved with.

Here in New Zealand, once again something has hit the news in a very sensational (and what would appear an unprofessional reporting) way. The issue really ought to be looking at the method of reporting but instead it has once again split the community on breast versus bottle feeding.
Now I've blogged on all of that before so I'm not going there again right now. But the timing strikes hard because it's also International Tube Feeding Awareness Week.

While others are going on about the rights and wrongs of breast or bottle (and who is saying what's actually IN the bottle - this particular catalyst was showing a father bottle feeding and I wasn't aware a father had any other feeding options available!) and the sense of isolation and lack of community support for bottle feeders - let's spare a thought for those who would love to even have those options.

As I say at the top - who cares HOW you actually get it in - really the situation you find yourself in when you can't get it in, when you can't feed your baby or child is thousand times worse.

The looks you get when you whip out a bottle (and I've been there a million times before) is nothing compared with taking a kid with an NG tube round the supermarket, when you have your 6 yr old in a pushchair and you kneel beside them as you clean your hands, prepare tubing and hook lengths of tubing directly to your child's stomach. People don't just give you dirty looks - they look as if you just might kill them if you so much as breathe in heir direction.

Tube feeding is not necessarily an end of life decision (although I have had one person suggest it would have been kinder to let my 6 yr old die as he runs to the car, carrying his feeding pump over his arm) but can in fact be a life-giving, life-restoring decision.

In our case, for T, it has meant the difference between a 3 3/4 yr old who got so tired with ordinary minimal play he put himself to bed each day to a 6 3/4 yr old kid who is within a few months of being able to go to school. If you couldn't find him you'd usually find him curled up asleep somewhere, worn out by simple everyday efforts. His development was falling behind. We couldn't go anywhere requiring him to walk longer than about 15 mins or else we'd have to take the pushchair.

When you bottle feed people will say to you that - you should have tried harder, longer, taken this or that, you could have done it if you had wanted to and so on. But that's nowhere near as soul-destroying as the comments you collect when your child won't eat - I can make him eat, you just have to show them who the boss is, if you feed him x, don't feed him y, have you tried p, q and w. You collect the you just aren't trying comments too - and when you have just had your child weighed and they've lost weight AGAIN and just rejected AGAIN a meal you've cooked of their favourite something, presented the best way you can to tempt them along those comments will cut you to the quick more than any of the comments I got while bottle feeding.

I don't normally post pictures of the kids on here to protect all of us from internet nasties and
I will remove them in a week or so so don't be surprised if you come back and find them gone.

But in the interests of Tube Feeding Awareness ( and remembering that actually it's getting the nutrition in not the delivery method that's really the most important!) here is just part of T's feeding journey.

Tube feeding in it's various forms has been a central part of T's life. It has been a life-saver as an infant.
It hasn't stopped him doing normal things - his health has done that.
But tube feeding has transformed him, changed him, enabled him to grow, develop and thrive.
Truly, it doesn't matter how you get it into him - surely the bottom line is that you do somehow!

And so I'm going to try and put in this year's Tube Feeding Awareness video. You'd be hard placed to pick which kid or person is the "tubie" in some of these pictures. They look good because they are able to get their nutrition. There are hundreds of reasons why someone might need tube feeding.
As one mother has said - better understanding of tube feeding would mean the end of isolation and exclusion. It would mean acceptance. It would mean support.

Isn't that what we all need in our feeding journeys?

http://www.onetruemedia.com/otm_site/view_shared?p=101882f988234e22444b042&skin_id=0&utm_source=otm&utm_medium=text_url

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!