Tuesday, October 31, 2006

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!

Monday, October 30, 2006

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!

Sunday, October 29, 2006


The flight to Graz was really quick, I slept most of the way. We took a cab to our accommodation. It’s quite rural, but only a 15 minute walk to the KINDERKLINIK, where I’m going to be spending a lot of time over the next 3 weeks.

We went out for dinner on the first night. Mommy and daddy had a schnitzel, I just had my usual tube feed.

Here’s a picture of our apartment and our neighbours.

Saturday, October 28, 2006

One more sleep

I've only got one more sleep until we go to Austria. I'm not really sure what it's going to be like for me. It's anyone's guess. But i tell you what.... daddy put a new tube in yesterday and the thought of that being the last time i have a tube going through my nose, down my throat and into my stomach is too exciting for words!

mommy's bought me a trolley, katherine suggested she get one for me. It's brilliant. I can walk holding onto the bar, but mommy or daddy has to hold the front cos it goes quite fast and my legs can't keep up.

I thought i'd post a couple of pics of me, i could be half the boy i am when i come back. weight-wise i mean. I hope i don't lose too much weight but it's to be expected when moving from a tube to oral feeding. Tube feeding is artificial.

Wish me luck everyone! Will try blog if i'm up to it.

Welcome to the world Kai

Here's a pic of my cousin. He's just been born. Isn't he beautiful? He's a boy, like me! Can't wait to meet you Kai.

Friday, October 27, 2006


Mommy told me there was a really good turnout at my fundraiser. Thanks to Nat and Em for organising it and thanks to everyone who bought tickets and who came last night. Your generosity is overwhelming. Thank you for helping us to pay for Austria. I will try and blog while i'm there so keep checking on my progress.

This is Nat and Em.

Thursday, October 26, 2006


This is Helen from KIDS. We had a fun session today, hopefully next time i see her i'll be tube free!

Tuesday, October 24, 2006


I had my last session with Claire today. She's going back to Australia. She said she's seen a huge difference in me after just 4 sessions. She was really impressed with how i pulled the caterpillar towards me, i used my proper pincer grip. Mommy was equally impressed. She taught me to pull a toy at home a few weeks ago, but i've been doing other stuff lately. But when i saw the string i knew to pull it. I've still got to figure out how to put things into containers, rather than just take them out. But that'll come, like everything else has.

Happy Birthday Erin

Happy birthday Erin. You're 3 today! Sending you big hugs... I miss you and hope to see you soon!

Monday, October 23, 2006

Physio and speech

There was an obstacle course for me to do today. I needed a bit of convincing though, was more interested in the people in the room than doing the course. I loved the mirror a lot. Katherine suggested i stand in front of something when i'm at my mirror at home, to stop me falling backwards. Mommy's going to put my table in front of it.

Tim did some food therapy with me. I was pretty defensive in the beginning but tim was patient and gave me loads of praise so i did take a few spoonfuls of chocolate mousse. By the end of the session i wasn't as defensive which was really good. I said goodbye to Katherine and Tim cos i won't see them until i come back from Austria. I'll miss them both.

Sunday, October 22, 2006

soft play & mates

Had a really fun day today. It was raining cats and dogs so we went to the soft play area and met some friends there. I really enjoyed it, was quite adventurous climbing all over the place. I especially loved the balls!

We went to pizza express for lunch afterwards. Tara and india were there and 2 other guys i've never met, fynn and felix. I had a little sleep but when i woke up we had lost of fun crawling all over the place. India and tara came back to ours afterwards, we all played with my telephone.

.. and i showed tara my mirror. she really liked it!

feet first

I've worked out how to get off the couch, actually.. it's been at least a couple of weeks since i managed this. I turn around and come off the couch feet first. Not bad eh? I'm a bit fearless at the moment, especially when i play in front of my mirror. I want to clap with both hands and watch my reflection, i haven't mastered standing on my own though so luckily mommy's always there to catch me when i fall back.

Saturday, October 21, 2006


Went swimming this morning. Missed last week cos i've had a cold. We had to try and blow bubbles under the water but i didn't really know how to do it. It's getting cold now so the teacher said i should start wearing a little wetsuit. It'll keep me warm... if i get cold in the water i'll get irritable and won't be able to concentrate.

Mommy's going out today with her girlfriends for lunch. I don't mind though cos daddy and i are going to see our new house, we're meeting a builder there who's going to give us a quote on the work that needs doing. It'll be fun hanging out with him for the day, doing 'guy things'.

Thursday, October 19, 2006


Had an interesting session. i played in a tent full of balls... Claire called it the 'washing machine' and she rubbed the balls all over my body, like bubbles. It tickled and i laughed a lot. I also managed to work the 'cause & effect' toy that i couldn't work out last time. How good is that?! The beans that i didn't really fancy touching didn't bother me this time at all. I liked touching them and throwing them all over the place... i made a bit of a mess, but that's what being a child's all about. MESS! i had a go on the swing too, i'm getting used to the sensation and am starting to enjoy it more now. I also had a little bounce on the trampoline.

Tuesday, October 17, 2006


Katherine's been on holiday in cape town (lucky fish), so i haven't seen her for about 10 days. We had a good session. She put the worm out for me to crawl through. Katherine really made me laugh, she was playing peek-a-boo with me. Here's a pic, you can't see me though cos i'm inside.. i LOVE it! i tumble and roll all over the place. I'm also quite nifty at crawling through it, speedy gonzales. I hope mommy buys me one.

here's a pic of me coming out the end. i was so fast.. mommy got a pic of me just in time.

Tim joined us right at the end. he's my SALT.. (remember!). he just came to say hi and do an incey teeny weeny bit of speech therapy.

Saturday, October 14, 2006

Alan & Caroline for dinner

We went to alan and caroline's for dinner last night. Mommy first met alan at ubs. She used to work there and alan was her boss. They're living in a beautiful home. I loved it, there was so much space for me to crawl around and play. I tasted some of daddy's mashed potato, it tasted nice but i spat some out. Not a very polite thing to do at the dinner table but i got away with it cos i'm little.

Friday, October 13, 2006

Are you gonna be a donor?

I know i'm too young to make this decision. But i know if i was to become an angel mommy would donate my organs to give another child a chance at life... it's not like i'd need them in heaven.

Mommy's met some amazing people through Heartline. one of the little girls called lucy was waiting for a heart transplant. The call came, she received her 'new engine'. She's doing really well, she's one of the lucky ones.

Please copy and paste this link into your browser, watch it.. then decide.

Thank you.



Helen came around for another play session. She tried to get me to take things out of a container.. which is easy for me... but i didn't want to put them back into the container. I far prefer flinging them out.. chucking them and watching where they fall! Helen writes notes, i want to write notes too... i want to take her paper away from her but mommy won't let me. We've got a few goals to work on. There's no rush though and no particular order, some i'll need a bit of extra 'push', others may come naturally.

Social skills - i have to learn to let go of a toy when i'm asked to, either with a gesture or by voice. I'll roll a car or a toy to another person, take part in a game.
Self help skills - i have to drink from a cup held by mommy or daddy and hold one of the handles (i do this already!). I must feed myself finger foods (i haven't been eating much lately cos i'm not feeling so great...).

Cognitive and play skills - I have to learn to put objects into containers (tut). I must find an obejct hidden under a container. I must transfer an object to another hand so that i can pick up another object. I must press a button/switch to operate a toy. I must take the stacking rings off the pole (i far prefer pulling the pole out of it's base, it's easier that way!).

Motor skills - i must use my pincer grip to pick up small objects. I must stir dry pasta/beans with a spoon or shovel.

Language - I must look at a familiar object when named or signed e.g. mommy. I must copy vocal play and different mouth shapes eg. blowing raspberries (i do this ALL the time, but on my own), poking tongue out (i copy mommy and daddy when they do this), smacking lips together and making 'b' sounds (i did this really well today!).

so, lots of little goals for me to aim for. but the great thing about KIDS is it's really relaxed. there's no pressure really. i may not do some of the things, and i may do others. I think what's important is i continue to develop as i am.

Helen left me a 'sensory box'. it's full of things made of natural materials and things with different textures. Things like pine cones, wooden sticks, sponges, brushes, paper, fabric etc. When i play with it mommy's to leave me alone. I must explore what i want, when i want.

Wednesday, October 11, 2006

Crusing for a bruising

I'm officially cruising for a bruising. i'm cruising furniture now and bruising myself in the process ;-) . it's far more interesting than just standing there. I cruised from one end of the couch to the other, just like that. easy peesy lemon squeezy.

Tim visits us at home

Tim my speech and language therapist (SALT for future cos speech and language therapist takes me too long to type..) did a home visit today. I'm a bit full up with a cold though so didn't want to eat. i did scrunch up all the wotsits though and made a great mess. Mommy tried giving me nutella with a rubber tube thing. She dips it in on both sides.. see she's thinking that if i bite either side i'll definitely get a taste. well.. i figured that one out ages ago, so i bite the middle of it instead, that's after shaking as much of the chocolate off that i can. i did show tim how i wave when mommy says 'ciao ciao' to me.

Tuesday, October 10, 2006


Had a good session today. I went on a swing! it hung from the roof and had a really big platform to sit on. i didn't fancy sitting on my own so Claire suggested mommy sat with me. I was fine then, but i think mommy thought she'd bring the roof down! i didn't hate it, didn't love it. but.. i loved crawling through the purple 'worm'. it was good fun in there, i felt like a hamster.

I'm not doing what i should be doing with toys that she puts in front of me.. i'm more into throwing things off tables than putting the bits in their little slots, where they belong. I'll get the hang of it, but not just yet. I've got 3 more sessions with Claire before we go to austria, then i'm getting a new O/T cos she's going back to Australia.. her mother-in-law isn't so well. I hope she gets better soon.

Sunday, October 08, 2006

Tara and India's for lunch

I'm sad. Tara and India are going to Goa for 4 months. I'm really going to miss them. We went to theirs for lunch. I was really sick though and spent most of the day sleeping. Here's a pic of Joseph and Tara being fed. I hadn't seen Joseph since he was a newborn, hope to see him again soon. Also hope i didn't make anyone sick.

Saturday, October 07, 2006

Daddy's afraid of pigs!?

We went to kentish town city farm today. mommy had to bribe daddy to stand near the pig, it was so fat i doubt it could even move!

Thursday, October 05, 2006

Soft play & KIDS

Stuart took me to the soft play centre. i had a ball! it had mirrors and everything. it was brilliant being able to explore without hurting myself. there were other kids there too.. i was really curious and wanted to touch their faces. if i could i would've tasted them too cos i just wanna put everything in my mouth at the moment, but they moved away before i could do that.

Helen from KIDS came around this afternoon. She's really great, i like her a lot. we played with teaspoons and pots from the kitchen. she said i've got great concentration. I love studying things, looking at them, tasting them... i was quite hungry while we played. mommy gave me wotsits. yum! i had about 10 of them!! i'm even biting and chewing.. using my teeth. we're going to set goals for me. little targets that they want me to achieve. as long as they make it fun for me i should be ok. we're meant to be moving to islington borough. another example of 'postcode lottery'. islington don't pay for KIDS. mommy's not very happy about that. these play sessions are invaluable. mommy's going to look into it more. i should get the same services no matter where i live?

Wednesday, October 04, 2006

Heart check-up

Daddy took me to great ormond street for my check-up. Last time i saw them was 6 months ago. They just had a look at me and listened to my heart, i didn't even need an echo! They want to see me again in 9 months time so they're clearly pleased. Daddy told them about austria... my heart has to be strong to go through with the programme, the cardiologist said it was. :-)

Tuesday, October 03, 2006


... my mirror has arrived! It's child safe. I LOVE IT! our wall isn't very straight though so if you stand far enough from the mirror you look all funny and distorted. Don't think mommy's going to use it to see what she's looking like, it's my mirror anyway.

Went to the soft play centre with stuart today. He got horribly lost though so we got there too late. But at least we know where it is now so can go on thursday.

Monday, October 02, 2006

Obstacle course

Had first physio session today in 4 weeks. It's been a long break, was only meant to be a 3 week break but i was sick last week. It was really good fun! Katherine had laid out a bit of an obstacle course, lots of different cushions, all lined up in a row. She made me 'chase' a toy and crawl over all the cushions. I managed it really well. She made it harder for me and increased the gradient to climb up.. managed that pretty well too, in fact.. Katherine was impressed! She's suggested going to a 'soft play' area, that way i can explore without the fear of being hurt. The flat we're living in now is so small i'm practically bouncing off the walls so think a soft play area is just what i need. Mommy's looked around and found one. Think she's going to get stuart to take me to it tomorrow.
Mommy's got to encourage 'cruising' around furniture, make me chase toys along the couch. also moving from one place to another, still standing, but just a small distance though. I think i'll get the hang of it really quickly.

Sunday, October 01, 2006

Elisa visits

Aunty Elisa arrived yesterday from Milan. She can't believe the change in me ;-)
I've come on leaps and bounds since she was last here... i love showing her what i can do now.