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!