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!