Day 2

Weight: 10.28 kgs

I had 150ml water by tube, but just before I had a bath I pulled it. So this is it. I’m now tube free! Not sure whether to laugh or cry. We started our day having occupational therapy. All the therapy I have will be geared towards me eating. They concentrated mainly on me retrieving objects from inside containers, but containers where I couldn’t see my hands. She noticed that I don’t spend too much time with one toy. If I find something too challenging I tend to move to the next thing, instead of working out how the challenging toy works. She told mommy and daddy to restrict the number of toys I have out at any one time. Makes sense really. She had a vibrating thing. I loved it, I put my hands on it for ages, then even took my mouth to it. It really ticked so I’d have to scratch my mouth after, but I kept going back for more.

After O/T we went straight to physio. At this point I was a bit tired. Eva asked mommy if she had any food, mommy didn’t! Mommy’s not used to carrying food around for me, she left it all in the fridge at home, looks like she’s also going to need a few lessons here! Eva had a biscuit, I had a bite of it. The physio won’t do anything to do with movement. She will get to know me and what makes me tick. Advise mommy and daddy where to set boundaries etc. She said that I must not be offered food. If mommy or daddy are eating and I seem to want some, they must just put it in front of me and I’ll take it if I want it. It’s all about me being in control. It’s about me learning what food is about. You see, kids who don’t have feeding tubes learn to be independent with regards feeding, when you’re tube fed you totally rely on your care giver to give you the food. The physio (Eva) said that children can go quite a while on very little food. She said I’ll come to a point when I realise that the food makes me feel better, and I’ll want more of it. I’m going to lose weight, but that’s ok. I’ll find my TRUE weight. You see, tube feeding is totally artificial, so, therefore my weight is too. I’ll find my weight, it could take time to get there, but get there I will.

After physio we went to have the picnic. I wasn’t as friendly as last time, I observed a lot today. I even reached for a biscuit and had a bite, all on my own, without being offered it. I found some nutella and sucked lots of that off a dish.


















After the picnic we went to the centre to do some shopping. It’s a holiday here tomorrow so we needed to get food in. Also mommy and daddy bought some plastic dishes (for dolls). They’re light and good things to use for picnics. They also bought me some new bottles. Some light ones. The professor said it’s important that my drinking bottles are light too.



















When we got home I had another picnic. I had a tiny bit of yogurt but mainly spread it all over myself. I’m starting to get a bit irritable now. I’m hungry you see and I don’t really understand why I’m not being fed. Eva did say that I will be very confused. I’ll notice a change in the way mommy and daddy are with me. They won’t be so attentive (like in the picnic), they have to do it, to teach me independence, that I can do this. I know mommy and daddy are always there for me though, whenever I look for them they’re there. That’s all I need really, reassurance.

It’s been a long day now and I’m tired, so I’m off to bed. Gute nacht!