And the dance becomes even more 'fun'!

You know how I posted about T being turned down by the feeding team but we were waiting to see the dietician from the team?

This long awaited appointment – been waiting 2 months already? He’s on Polycal which is supposed to be monitored by a dietican…

His feeding therapist, who has said she can’t really do anything for T, but suddenly said once he is seen by the dietician she can work out a plan for him…

The appointment was set for 30 Oct, and on the 24^th we got a letter in the mail saying the appointment had been changed – to 23 DECEMBER!!

No reason, just a form letter.

Now, here in New Zealand, this is a total disaster. We don’t just have 10 days off over the Christmas/New Year period. It’s the summer holidays from schools etc and most people take their 3-4 weeks annual leave over this time. Government departments etc basically shut down over January. The hospitals only really do urgent stuff for about 3 weeks over this time. Outpatient clinics are at a total minimum.

So by deferring to the very end of December NOTHING will happen for T until Feb. He turns 4 at the end of April!!!

As P rightly said, since T isn’t straightforward, he’d expect that December appointment to be cancelled too.

T was referred to the dietician in August! He is basically formula dependent and at 12kg or about 26 lb at 3 ½ is seriously underweight. He jumped from 11.5kg to 12kg thanks to the Polycal but isn’t gaining any more and so is staying static again. He’s tired, tearful and lacking in stamina – which affects everyone in the family. He’s gained 500g all year. And we can’t even see a dietician with experience in specialised formulas/supplements etc!

AAAAARRRRGGGGHHHHH! That's how you spell frustration!

Some people have no idea!

On Fridays the boys have swimming lessons and my mother takes them so I don’t have to restrain T from throwing himself in the water!

After swimming she buys them an icecream each. This Friday I had to do some jobs in town so I met them at the pool afterwards. My mother said to T that if he could find something he wanted to eat she’d buy it for him. So he found himself a packet of chippies (potato chips). If you are lucky, he’ll eat maybe 6 on a good day. Often he hands them back to you if you offer them! But there are plenty of calories, fats – and the salt makes him more likely to drink his formula…all good.

He was very slow walking along so the others got ahead of T and I and didn’t see this exchange – a lady saw us making our way along the street and stopped me and said “You shouldn’t be feeding those to a child!”. I was totally stunned and she walked off before I had a chance to come up with a smart reply – but really!

It’s no business of a stranger anyway, T hardly looks obese after all, and if he eats even 1 it’s a huge achievement!

There’s a lot of publicity here about the obesity epidemic, school now check the kids’ lunch boxes to ensure they are only bringing in healthy food – not even home baking is allowed if it has chocolate etc – I’m soooo glad I’ve got my kids out of school before things went totally mad. They are talking about putting extra taxes on high calorie foods here in New Zealand. And it’s got to the point where total strangers feel able to pass comment on what you feed your child in the street!! Obesity is a serious problem, don't get me wrong. I know a passerby on the street won't know T's history - but that's precisely why you shouldn't pass comment. Chips are a treat food - and kids are entitled to treats every so often, quite apart from the facts of T's eating habits!

I was totally stunned – and really angry! T handed me back the packet and refused to eat any anyway – I tried again later and he ate a grand total of 4! Yay for T!! But considering the day to day battles to get this child to eat and gain it was totally upsetting!

So, please anyone reading this - think first before you pass comment on parenting - that tantruming child and exhausted mother might have had a day of it and so not be coping so well, that tantrum from a much older child could be an autistic meltdown or sensory overload, and that packet of chips could be a crucial part of a child's calorie intake!! Help - don't criticise!

Full Steam Ahead!

We had a fantastic day this past Sunday.
Because W has Asperger's we are in touch with our local AS support group - Cloud 9.
Every so often they organise family outings - and on Sunday they had a train focussed one!

With 3 boys we have done trains to death - but this one included a trip on a real STEAM ENGINE!
That's an opportunity you really can't turn down, and besides T is still in the train phase.

So to make a real day out of it we caught the train from home to town and then met up with the group to catch another train to Silverstream where the steam engines were. Of course, nothing ever goes quite smoothly and so we only got a short ride in the train from home before we had to change to a bus to go to town. So poor T missed his favourite tunnels.

We got to Silverstream and walked a short distance to where we were met by a real, steamed up steam engine! We rode the engine to the Steam Museum and workshop where they restore the trains. We got more rides in the steam engine, toured the Museum and had a guided tour of the workshop where we could hear how they actually got hold of the trains and how they were working on them.

T just loved the steam - until he got a good face full! N really enjoyed the workings and W said he enjoyed but didn't really light up until he got an unexpected treat at the very end - he rode in the cab with the engineer and found out how they actually drive the trains. This wasn't a steam train but one of the ordinary commuter trains and so a concrete, real, everyday thing - just as he likes it!

He got the chance, a rare event, because one of the adults with the group knew the conductor on the train we were travelling home in. So the conductor asked if any of the kids would like to come up the front with the engineer. All the kids were pretty tired and W said all he heard was the word 'engineer' and stuck his hand up because he thought that sounded interesting! I've been working on volunteering in a reasonable time frame - instead of dithering over whether you want to or not, will something better come up, do I dare risk things etc - so it was a great chance to not only use that but also to show what cool things can come from making decisions.
W says it was almost as cool as the time he got a proper flight on the Rescue helicopter at the NICU Christmas Party.
W got to stay in the front all the way back to Wellington.

The boys were happy but tired when we got back and T finally fell asleep in the bus in the way home. This was the bus we had to get out of a short distance from home and transfer to a train. I was concerned T would wake and cry all the way home - but no, he was sooo tired he stayed asleep in my arms even as we got out of the bus, walked across an over bridge and got into a train! He woke coming into the station at home and was totally confused as to where he was!
It was very sweet - and to add to it the bus driver said he'd driven buses in our old suburb when I'd caught buses often and he remembered W sleeping on the bus like that!

But despite eating very little T had lasted well through a long and fairly demanding day, N had kept his behaviour together and after his trip in the front of the train W was aglow! It was a great day - toot toot!

The Feeding Team rejects T

I am soooooo frustrated!

I had an inkling this would happen but it’s just so unbelievable!

T does not qualify for the feeding team.

I just wish instead of this fight I was just banging my head against a brick wall – because then I could stop!

I should be pleased that he doesn’t have enough wrong with him to qualify but I have run out of options here and I can’t stop this slow slide downwards that he’s going through right now. He had 1 ½ mouthfuls of meat for dinner last night and has had 2 bits of brownie and 400 mls of formula all day – it’s 2:30pm.

So now we try to get to see someone through the mental health team (whenever they can fit him in) but I just can’t see a way out of this mess, largely because he’s still in pain despite his meds. He’s waking multiple times a night and Peter and I are exhausted.

I don’t even want to see this dietician later this month – unless someone can give us _real_, _practical_ advice on getting him to eat then it’s all going to be a total waste of time. The GP has said she only wants him weighed once a month – unless he starts to lose!

This is all such an impossible mess and no one seems to want to or be able to help. I just want him to eat properly and be sure he’s getting what he needs. Boosting calories is just a bandaid – but so long as he’s gaining no one seems to care _how_ he gets it.