Day 1
Weight: 10.51kgs
This is a picture of the KINDERKLINIK from the back.
We arrived there at 9am to meet the professor. Another doctor called Fritz took us downstairs to do some paperwork, then to the professor’s office. She asked mommy and daddy about my medical history, all the major stuff, like my chromosome abnormality and my heart surgery. Then she asked about my feeding, and what therapy I was receiving for it. She watched me for a bit, she said I was really ‘intelligent’, she could see my interest in the world around me. She said how good it was to meet me cos she can’t tell what children are like over email (of course!). When she’d heard I had a chromosome abnormality she said she wasn’t sure what to expect, but that she was happy with what she saw, that I’m doing extremely well.. especially considering I’d had 2 major surgeries as well ;-) She explained a bit about the KLINIK. That we will be the ones who dictate when we want food, we will not be offered it unless we ask or gesture for some. At this point I’d already missed my 9am feed (but I’d had water), so she suggested not having a feed until after the picnic session at 12. We decided I’d have my 5 o’clock feed, so that would mean missing 2 feeds. She said if I pulled my tube, mommy and daddy weren’t to put it back in.
We met some therapists. I’ll be having physio, O/T and speech and language. The therapy will all be related to my eating though, so quite curious to see what that’s all about. I’ll be having therapy most days.
At 12 we went for the picnic. They wheeled in a trolley full of different foods. There was mash potato, custard, nutella, yoghurt, pretzels, biscuits, juice, puddings… lots and lots of things. Well, I’d never seen so much food at one sitting so I just poured half of it on the floor and made a right mess. There were about 4 other children in the group, 2 of them are from London. They’re older than me though and have been in graz for about 2 weeks. But both the girls are eating!!!! There was another little girl who’d had chemo, she was eating too. Mommy and daddy were instructed to leave me be…. So they watched while I poured all the food on the floor, wiped my hands in it, poured juice all over the place… I had a ball! After I spilled some juice on the floor I stood up in it and slipped and fell. I looked to mommy and daddy for a reaction. The professor said I just needed to know we were there. She was right, cos a minute later I was back into the ‘baby zone’. Watching the others and having fun with the plastic cups and saucers and things. I wanted to say hallo to everyone in the room, so one by one I went around. One lady didn’t really like me though, I think she was scared I’d hurt her baby (I’m much bigger than him!). Mommy could see she was getting worried so she came to take me away. The professor told mommy to leave me alone, but mommy said she was just concerned about the woman. The professor said that people enter the room at their own risk and she must just let me be and if they didn’t like it, then it’s not our problem! Phew, so we could all relax after that. But I got a bit overly friendly with another little girl. See, I want to touch their faces to say hallo, but I was a bit rough with the one girl and she cried. The professor said not to worry, it’s part of life! Alright then!
I found the whole thing really good. There was no pressure at all to eat. I did taste some nutella though… I began to get frustrated and the professor explained to mommy what I was going through. I was moaning a lot. I was hungry and couldn’t quite work out what to do. The professor said I’d either want to be fed by mommy or daddy, or want to feed on my own, it was too soon to tell which one I’d choose though. I began chewing at my tube, mommy came to stop me but the professor said not to… but instead made mommy dip it in chocolate! At one point the professor asked daddy to feed me a bit of food. I had one spoon, then rejected, I didn’t fancy any more. The prof told daddy to move right away from me, to let me have some space cos I was feeling pressured.
It’s all about letting us be. Allowing us the space to explore food, to touch it. The goal in the beginning is not to eat, but to feel the food. The eating will come later. The professor was very happy with me, said it was good that I wasn’t afraid of touching food and being messy. Very important in the weaning programme, it’ll make life easier apparently.
I think my tube will come out in the next couple of days. After that things will get tough. It’s a learning curve for all of us, especially me. The professor said tube fed infants are ‘dependent’ on the tube, like an alcoholic is dependent on alcohol. And it involves the whole family. I have to break that dependency, but if the other kids can do it.. then so can I!
We met some therapists. I’ll be having physio, O/T and speech and language. The therapy will all be related to my eating though, so quite curious to see what that’s all about. I’ll be having therapy most days.
At 12 we went for the picnic. They wheeled in a trolley full of different foods. There was mash potato, custard, nutella, yoghurt, pretzels, biscuits, juice, puddings… lots and lots of things. Well, I’d never seen so much food at one sitting so I just poured half of it on the floor and made a right mess. There were about 4 other children in the group, 2 of them are from London. They’re older than me though and have been in graz for about 2 weeks. But both the girls are eating!!!! There was another little girl who’d had chemo, she was eating too. Mommy and daddy were instructed to leave me be…. So they watched while I poured all the food on the floor, wiped my hands in it, poured juice all over the place… I had a ball! After I spilled some juice on the floor I stood up in it and slipped and fell. I looked to mommy and daddy for a reaction. The professor said I just needed to know we were there. She was right, cos a minute later I was back into the ‘baby zone’. Watching the others and having fun with the plastic cups and saucers and things. I wanted to say hallo to everyone in the room, so one by one I went around. One lady didn’t really like me though, I think she was scared I’d hurt her baby (I’m much bigger than him!). Mommy could see she was getting worried so she came to take me away. The professor told mommy to leave me alone, but mommy said she was just concerned about the woman. The professor said that people enter the room at their own risk and she must just let me be and if they didn’t like it, then it’s not our problem! Phew, so we could all relax after that. But I got a bit overly friendly with another little girl. See, I want to touch their faces to say hallo, but I was a bit rough with the one girl and she cried. The professor said not to worry, it’s part of life! Alright then!
I found the whole thing really good. There was no pressure at all to eat. I did taste some nutella though… I began to get frustrated and the professor explained to mommy what I was going through. I was moaning a lot. I was hungry and couldn’t quite work out what to do. The professor said I’d either want to be fed by mommy or daddy, or want to feed on my own, it was too soon to tell which one I’d choose though. I began chewing at my tube, mommy came to stop me but the professor said not to… but instead made mommy dip it in chocolate! At one point the professor asked daddy to feed me a bit of food. I had one spoon, then rejected, I didn’t fancy any more. The prof told daddy to move right away from me, to let me have some space cos I was feeling pressured.
It’s all about letting us be. Allowing us the space to explore food, to touch it. The goal in the beginning is not to eat, but to feel the food. The eating will come later. The professor was very happy with me, said it was good that I wasn’t afraid of touching food and being messy. Very important in the weaning programme, it’ll make life easier apparently.
I think my tube will come out in the next couple of days. After that things will get tough. It’s a learning curve for all of us, especially me. The professor said tube fed infants are ‘dependent’ on the tube, like an alcoholic is dependent on alcohol. And it involves the whole family. I have to break that dependency, but if the other kids can do it.. then so can I!
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