If Music is the food of love play on...

I sit here, pondering a blank screen, thoughts tumbling, cogitating on how to start this, how to order it.
The sun is shining brightly, cicadas buzzing and W is playing the piano softly in the background.

Beautiful music, yet every time he plays I remember with a pang that I meant to talk to someone about music therapy and help for him. I was talking to the kids about music and asking about the emotions in a particular piece and W was quite incredulous and told me that music doesn't give emotions because it's just a bunch of notes. Certainly going to hold his playing back if that's how he feels - and terribly sad to think that whole world is still a closed door to him.
Ah well, add it to the list of things to tackle for the kids when I get time...

Food - yes well...T saw the dietician a couple of weeks back and she's happy with progress.
We are now sitting between the 5-10th centiles for everything and he's eating more on a regular basis. Over the past few months he's gained around 500g a month and is now sitting at 15kg.
However - just when I thought we'd be making steady progress towards the end of tube feeds (down to 750ml/24 hrs) she has said that he needs a minimum of 600mls a day to get enough calcium and protein for growth and bone strength etc. I'm not planning on compromising that so if he's gained this month then I'll drop him to 700ml but that'll be the final drop.

Our primary focus, as always, is increasing oral intake but the major issue is solid food. At this point, if T drank 600mls of formula over a day, I know he'd reduce his solid intake. 600mls is a lot of liquid!
He needs that volume because of his food allergies so he can't get the easy forms of calcium particularly.

So the dietician's instructions are to continue to focus on solid food and simply tube the formula overnight.
So until he cracks this one we're back into no-man's land, sleep deprived territory. His feed usually takes around 4 hours and then the pump needs to be turned off. We don't have to re-hang another feed at that point thankfully.

When I get woken early in my efforts to go to sleep then I have huge problems going back to sleep again and will spend literally 1 1/2 - 2 hours awake and trying to go to sleep. So I actually get more sleep and definately more connected sleep if I just stay up to turn the pump off around midnight or so.
The first few weeks were awful but my body's adapting again and like this time last year, I'm actually enjoying the quiet darkness of the house when no one will come and interrupt me with other demands.
That doesn't mean my bed doesn't have a strong magnetic pull most of the time though!

But progress is being made on the T and food front.
Unlike on the N and food front. The war still rages there at fever pitch and honestly, there are as many dark, threatening clouds closing in around us on that one as there were before T's surgery.
The child eats the absolute bare minimum and has recently lost 700g without any effort at all.
He eats reasonably (for him) for several days and then goes back onto starvation rations. Today is a typical day - 1 weetbix for breakfast (which took 30 mins of nagging to get down), followed by one of his high cal drinks to wash down his ADHD med.
Morning tea - usually a battle of around 20 mins to eat a sliver of cake, usually uneaten in the end.
Lunch was a slice of bread with peanut butter and marmite. He's licked some of the topping off but that's all.
Dinner - I know, he'll be the last to finish and most of the 'family time' will be spent telling him to stop talking and eat something. In the end he'll eat about half of what T eats!

We have a meeting tomorrow with a psychologist who has been consulting a fellow practitioner on how to handle the eating. I am, by turns, excited that someone's prepared to try and help us, and fully expecting to find all their suggestions are things we have tried previously and failed with.
P's saying if we don't get anywhere this time round then we have to tube him like T.
First stumbling block - getting a medical person to agree...familiar territory anyone?
Wish us luck!

Milestones ticking by...

Here we are, lots of thoughts percolating round in my head, lots of jobs I ought to be doing - all pretty ordinary!

A couple of weeks ago N turned 9. He still has a couple of weeks until his due date 'birthday'.
I commented to the GP when we were there for our monthly weight/height check that it amazes me some times that he's actually survived this long.

This point in the year is full of milestones/anniversaries call them what you will. Events which changed things and quite possibly haunt me with their ripples echoing through the years.

We have N's birthday and due date in Jan/Feb.
We have T's birthday and due date in April/May.
We have W's birthday and due date in June and July.

Thrown in for good measure we have T's first hospitalisation with feeding problems in July and then his second one in August and a bit later where everything went totally pear shaped for us with the docs.
That is definitely a milestone which shaped, changed and haunts me.

In amongst all of this today is exactly 2 months since W's reflux surgery.
Exactly 2 months since we became a totally reflux free household.
W has made so many advances in that time - he is eating completely normally - incl fizzy drink!
He hasn't had a dizzy spell since surgery so that was clearly due to the reflux as he was having a dizzy/cardiac event once ever couple of weeks at the best.
His asthma preventer medication dose has been able to be halved.
The snoring has stopped and he can sleep completely flat.
He has commented with great joy that he can now drink orange juice and fizzy drink without it burning. We were unaware he had been experiencing so much on-going and regular pain with normal activity and that does make me very sad.

On the 3rd of Feb we will mark another milestone.
T will have been reflux free for a full year. The 3rd of Feb 2009 was when he had his fundoplication and g-tube surgery. In many ways it is also another birthday for him.
In this time he has learnt to eat and enjoy eating - although that is still very much a work in progress.
His development has blossomed.
His energy levels and so our freedom as a family have increased dramatically. P and I kept looking at each other over the summer break and marvelling at what events we could get involved with as a family that would have been completely impossible last year.
His growth has gone from under the 1st centile to between the 5th and 10th.

However the 1 year milestone is also cause for reflection.
I had mentally prepared myself for him to have the tube in place for a year. In telling people that I was imagining not using it for around 3 months before removing it a year after it went in.
T is a long way from that magic moment.
He has gained 500g each month for the past two months. Every month he gains I decrease his total volume of formula by 50mls. Maybe not much but he was getting 900mls over a 24 hour period about 4 months ago and he's now getting a total of 750mls over a 24 hour period.
So those weight gains are being sustained by his oral intake and that's the name of the game.
After all he, and we, have been through I am not prepared to compromise his progress - nutritionally or developmentally just because some one else is in a hurry. It will take as long as it takes and in the meantime we will continue as we are - broken nights, tubing to scrub and sterilise, formula to make up and all.

I am still planning on having the tube in place for around 3 months without using it to be sure he's maintaining growth, development and eating - and that he can sustain it all through an illness or two. Pulling the tube and then discovering we weren't quite there yet means either going backwards quite fast - or another surgery to put it back in. I'm not playing either of those games.

So it is a bitter sweet milestone. I am sad we haven't achieved what I had hoped and sad it's another missed milestone. I'm watching T and seeing developmental signs he isn't where he should be either - not just in speech but other areas and wondering where, what impacts and how we're going to work on it all.
I'm still hoping that this time NEXT year we'll be pulling the button. After all it did take us two years to get W eating without supports.
We do talk about life without the pump, T knows about and is desperately keen to have his "I can eat/Bye Bye pump" party. We will get there.

The children's birthdays are always a moment when I reflect on the path prematurity has taken us, what it's given us - and what it's taken away.
I know I have developed strengths and interests I would never have if they had been 'normal', full term and uncomplicated children. But their and our lives have been made much more difficult, and the children will carry the effects all their lives. We don't even really know to what extent T will carry it but can be sure that there are effects - largely in his language difficulties.

I have seen more research today talking about long term health issues in prematurely born children so there are other land mines ticking in our path and I don't know how exactly to step around them.

So many milestones, so many events - in the past and to come. Such a roller coaster ride.
But in a way, to recognise and enjoy the highs, you have to have experienced and understood the lows.
There are so many things I will never take for granted again. So many small rays of sunshine you have to learn how to grasp with both hands and pull towards you to illuminate the way through the next cave.

But the biggest thing I hope I never take for granted is my wonderful, strong, inspiring children.