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.