Quick Update on T

So, here's where we're at - it's a bumpy old ride...
I spent yesterday feeling pretty down - according to the nurse T has lost 600g in the last week. I got him checked by the GP (we've been doing serial weights there since about April last year) and his last weight there was pre-op and he's lost nearly a kg in that time.

But...over that week in between weights from the nurse he had a really bad time with eating. I contacted the dietician and she was busy and so there was about 4 day delay in getting back to me - that'd account for some of it.

The nurse weighed him with a dirty nappy, jeans, singlet and long sleeved shirt on the first time and the second time with a fresh nappy and t-shirt and shorts. I've now weighed clothes, nappies etc - truely anal I know but I'm NOT going to be blamed for all of this! And those differences account for 300g of the 600g difference!

300g is still 300g and he didn't have it to lose so I'm really not happy. But we've also had a number of times when his tubing has come apart and we've fed the bed instead of the boy so if he's not getting his 'rescue calories' then that's not going to help the situation either.

The hard line approach of the dietician resulted in T just playing with his food, taking a few teaspoonfuls and lots of crying to the point of almost being sick, or doing a kind of choke thing on his food and then spitting out everything in his mouth.
So I'm now going to pretty much totally ditch her management technique. It's not the way I want to operate, nor is it doing T any good.

Yesterday evening and this morning T wanted formula, I wanted him to eat a couple of mouthfuls. He refused so I refused. He opted out entirely at that point.

Lunchtime today he ate well and then asked for formula. So I gave it to him. He said to me "See, eat, finish then milk. No eat, spit out, no milk." That's right buster!!

But he's got this real fear of being sick and on a number of occasions has backed away clearly scared "No, no might be sick". I just give him tastes on the tip of the spoon then, he can see it's only a very small amount, to reassure him. Sometimes then he eats the lot once he's be reassured, other times he doesn't.

I don't know and can't know how his tummy and he are feeling so I have to respect and trust him. If we push and push and he knows there's no escape and he's trapped into doing something that feels bad then we're going to wind up with a kid who is scared of food. We don't have that at the moment - and I don't want to go to that particular circle of hell. Been there before with W, not going back again.

The whole situation drives me crazy - but not so much on T's part but more on the expectation he's just going to be magically better now he's had the surgery. Monday will be 3 weeks post op - he had nearly 4 years of feeding pain and difficulties. It's not going happen overnight but it will happen - on his timetable. So long as his health and development are secure, as measured by his gaining and growing, I'm prepared to take his time on this one. Why others don't want to I don't know.

We see the surgeon on the 10th and the paed the week after and the dietician the week after that so hopefully in that time we can muster information and support for a plan to go forwards WITH T.

I knew it wasn't going to be easy but really, the reflux fallout is just so far-reaching, stretches as far as the eye can see...