New month, new centile...

Yes, you read that right!
T is moving on up...
He got weighed again on Friday and according to the doc's scales and measurements he is now 13.5kg and 95.5cm tall.
That places him on the 5th centile for height and weight and gains of 500g and 0.5cm in the last month - doesn't sound like much and it's not the meteoric rises we had before but over the past nearly 3 months since his op he has gained 1.5kg and grown 1.5cm so that's significant.

Add in the fact that he's been quite sick and we've decreased his overnight feeds a little and it's all a good trend!

He's not really eating any more than he was pre op and I was in a bit of a funk about that in the last week or so but then I sat and thought a bit.

Amazing what can happen when you actually calm down and think...
He had 6 weeks on purees and in fact he had more like 8 as he slowly weaned off them.
He's only in the last 3 weeks or so managed to go most of the time without his solids getting stuck on the way down at least twice a day. When things got stuck it caused him a lot of pain so not really helping to learn that it's safe to eat now.
So he's really only had about 3 weeks where there hasn't been a frequent risk or experience of pain when he eats.

So we're in the food is fun mode and that's the most important lesson for him right now.

The dietician wanted us to decrease feeds from 1 litre overnight down to 800 mls overnight but as I said in my last posting he wound up washed out, exhausted and teary at 800 mls. He's not so bad at 850mls so I'm working on a total of 850mls in 24 hours. Some days he drinks 150 of that in 50 mls bits, some days he only drinks 50 mls. So I just deduct what he's drunk from his overnight total and feed him accordingly.
I'm not completely happy with his energy levels on 850mls - he spends a fair amount of his time "laxing" - his word for relaxing, which consists of cuddling down with a blanket, cuddly and dummy on the couch - but he's got to have the opportunity to try to get hungry and eat.

When the nurse weighed T he said that normally they like to see a gain of 1 kg over a month and T has only gained 450g in a month, but that he'd be happy with T's gains as he's such a busy kid.
I think it shows how there is a gap between the feed levels and his eating levels and required calorie levels but we've got to try and see what he can do on his own too.

But he's a changed child from pre-op and it was all so worth it!

In other news N is not doing so well - he's down a kg in the same month although he has grown - so not looking the best!
However we're hopeful that'll pick up a bit as we've seen T's paed for N and his growth and ADHD medication. She's changed everything around and he's now got something to help slow him down a bit at night as well as a total change of medication for during the day. This doesn't seem to supress his appetite anywhere near as much as the other did - he even ate breakfast 30 mins after taking it whereas on the other you had about 15 mins to try and cram something in!

So improved sleep (he's now out each night well before 10pm when it used to often be midnight) and better compliance - like actually stays IN BED, never mind in his room, and less appetite supression will hopefully result in better growth and weight gains for N!

T just had his birthday party this weekend but I'll post about that later in the week when I do a birthday update on that one just for him.

W just keeps on keeping on :-) He's growing like a weed and eating us out of house and home! I had to buy him new clothes recently as he was looking stupid in his ones - he's really shot up again in the last couple of weeks! He's doing a bit of the snotty pre-teens mixed with Asperger's makes life interesting, but he's doing nicely over all. Gives me hope for the other two that's for sure!

I'll post again later in the week for T's birthday!
Eleanor.

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!