Sunday, December 31, 2006

Granny Stella

I just thought i'd attach this picture of Granny Stella on Christmas day. I think she looks very pretty. I'm hopefully seeing her next year some time. Thanks for the lovely christmas presents Granny.

Eating for England

I've stopped taking high calorie milk. Even though i lost weight when i was sick mommy and daddy decided to see what would happen if they stopped it. Well, i'm eating much bigger quantities now. I'm having a bowl and a half of porridge for breakfast, i'm having veggies for lunch. I had fish the other night which i loved. I'm eating fruit pots after every meal for dessert and i'm also having sliced banana for snacks. I even had my first pasta dish last night, but they blended it a bit so i could chew it better. I managed fine. I love food! Daddy's gone to buy me some fillet steak to try. I'm on iron supplements but if i like red meat i can come off those. hold thumbs.

Saturday, December 30, 2006

This is for Rebecca

I'd love to tell you all about Austria. If you want to contact me please go to my profile and send me an email.

Friday, December 29, 2006

Happy Heart Day to me!

A year ago today i had my open heart surgery to correct my ASD and VSD. I can't believe a year's gone by, but to be honest with you i don't really remember much about the surgery.

I thought i'd attach a pic of how i was back then, pre-surgery. Just so you can see how far i've come! I didn't have a tube in when the pic was taken though... but my cheeks say it all.

Wednesday, December 27, 2006

Appetite's back

I finally feel like eating again. I had 2 bowls of porridge for lunch, then had carrots and potatoes for dinner followed by 2 fruit pots! I'm sure the weight i lost will be back on in no time.

Tuesday, December 26, 2006

Bo(ck)sing day

Today was a good day. Mommy and i left hospital early... as soon as the birds started singing. We had leftover turkey, roast potatoes and beans for lunch. I ate some soft bread, the doctor said everything i eat should be dry. I chewed it really well, i enjoyed it. everyone got a tad over-excited seeing me eat. but it's been a while, so i guess i can't blame them.

Nonna, nonno and elisa left today for italy. I feel really sad. it's been a funny time. I've just wanted mommy. i think hospital threw me a bit. i'm tired. I had fun with them though.. i just haven't been myself.

Mommy spoke to lizzy today. She's in india with my good friends.. tara and india. They're having a wonderful time in the sun. lucky b*ggers. i miss them. tara and india will be able to tell me all about their adventures when they get back. can't wait!


Hi, well mommy and i spent the night at hospital. They re-hydrated me. I've got a runny tummy cos of the antibiotics i'm on for my pneumonia. Hopefully when that's settled down i'll start eating again. I'm just drinking lots of water with Dioralyte in it. Doc said i mustn't eat anything for the next 24-48 hours and i'm not allowed any milk. I've lost lots of weight but i'll put it on again when i start eating. Silly mommy and daddy trying to get me to drink milk. that was the wrong thing to do!

Now i'm going to go and enjoy all the brilliant presents i got from Father Christmas.

Monday, December 25, 2006

Buon Natale!

Happy Christmas, Buon Natale everyone!

I'm drinking more milk now. Mommy wants me to drink even more though. If i can't manage it today she'll take me to A&E.

Here's a pic of me near the tree. Mommy bought me this santa outfit that's about 10 sizes too small. I feel like a right plonker in it, but mommy insisted i wear it. (tut).

Sunday, December 24, 2006

Kai and Maja's Christening

My cousins Kai and Maja were christened today. Doesn't Maja look pretty in her dress, her granny made it for her. I still haven't met Maja and Kai, hope i get a chance to this year. Kai looks just like his daddy, my uncle Glenn.

Christmas Eve

Everyone had a really nice dinner, except me. I'm not eating. I'm losing a lot of weight. If things don't improve soon mommy's taking me to the hospital. I'm drinking though, so that's good. I've only been wanting to drink water in the day time, milk at night, but i need to drink more milk in the day, to get the calories and nutrition.

Will see how i go.

Friday, December 22, 2006

Going home today!

I'm going home today. I had pneumonia in the end. I had a lot of things apparently which all mean the same thing? I think everyone should try and speak the same language. It can get rather confusing. I hate hospital, glad to be leaving. It's good timing cos nonna and nonno arrive today from Milan. I'm still not eating much. I'm drinking lots of water though. The reason i've had to stay in a bit longer is cos i was still needing a bit of oxygen at night. in the day i was managing fine, but at night my sats (amount of oxygen in my blood) were dropping. They usually do when you sleep, but mine were dropping to 89%, the doctors wanted them to sit at 92% at least.

My old SALT and dietician came to see me. They've given me iron supplements and a multi-vitamin to take. My old SALT didn't ask about Austria at all. Find that really odd. She knew how i struggled to eat, you'd think she'd wanna know how it all worked? Oh well.

Wednesday, December 20, 2006

Arsenal vs. Inter

A few players from Arsenal visited us today at the hospital. They visit every year. They gave me some presents and a scarf. Daddy's made me give the scarf to Jack. He's the other little boy that Stuart looks after, he supports arsenal. I'm an inter milan supporter apparently. I don't know what all the fuss is about. Mommy said i should be allowed to choose which football team i support. Daddy said 'no way!'. Mommy was just winding him up i think. It was nice to meet you guys but that's as far as it goes. sorry.

Mommy was hoping Fredrik Ljungberg would be there. he wasn't.

Sunday, December 17, 2006


Hi everyone. I'm in hospital, been in since friday. i've hardly slept. I'm on oxygen 24/7 cos it's hit me really hard. I'm being nebulized with steroids (sounds like something from star wars), at first every hour, then every 2 hours, now it's every 3 hours. mommy asked that they take care when they do it, cos it always wakes me up. So far i haven't slept through one of them. I'm like a zombie.

The doctor's mentioned the ng tube, to help me feed. Mommy and daddy said under no circumstances are they to put one in. YAY!! they've been syringing milk into me instead. that way i don't have to work so hard. but that was then, now i'm drinking from a bottle again but don't fancy eating. I've lost lots of weight. But it'll come back.

As soon as i'm coping without oxygen i'll be home. can't wait. I'm sick of the ward, it's noisy, bright lights and they wouldn't even let mommy or daddy take me for a walk. I just wanted a change of scene, but cos i'm on oxygen i have to stay where i am. (tut).

will blog again when i'm home for good.

Friday, December 15, 2006

Still sick

I haven't been well at all. I'm going to the doctor this morning. I'm hardly sleeping or eating, i'm coughing a lot.

I'll blog again when i'm feeling better.

Tuesday, December 12, 2006

Snot bucket

I'm sick. I feel dreadful. I was up at 4am with a temperature, coughing and sneezing. Mommy gave me some calpol and i got to sleep just as her alarm was going off to go to work.

Mommy came home early from work today, she had a half day. We had a nice afternoon sleep together. i still feel awful so am going to have a nice bath and climb into bed.

Monday, December 11, 2006

Avocado & banana

Mommy told stuart to give me avo for lunch today. I loved it, i ate a whole big one.. all to myself. I even finished off my meal with some fruit puree. I prefer sweeter things to savoury things... i do eat savoury stuff, but i'm not a huge fan.. yet.

I've just had some sliced banana for a snack. Mommy and i shared one, so i had about half. Mommy didn't mash it.. it was easy to chew though. I really liked it.. should keep me going until dinner time.

Saturday, December 09, 2006

Elf for a day

copy and paste the link. you need sound!

Scrambled eggs

I had scrambled eggs and toast for breakfast this morning. I only had one bite of toast but chewed it really well. The rest i threw on the floor, i love seeing mommy clean up after me. I quite liked the eggs, but they're a bit weird. I really fancied porridge so i guzzled down a whole bowl of that.. the egg didn't full me up enough.

I haven't had custard for a day now. I know mommy and daddy are trying to get me off it.. they don't want me to form bad food habits, bit irritating cos i love that custard. Maybe if i shout louder tonight they'll give it to me. Let's see.

Friday, December 08, 2006

Physio & Speech

I had my last physio and speech session for the year. Katherine made me do some 'cruising'. She said i'll wanna walk when i want to carry a toy in my hand. At the moment i just drop them so not sure when that'll be. I'm in no rush to walk, crawling's getting me around just fine at the moment. I love cruising furniture though. I even stood on my own last night for about 2 seconds, i didn't even realise i wasn't holding on to something... how's that for balance?

Tim really wanted to hear my babbling, i babbled a bit but not as much as i do at home. I was more interested in showing tim and katherine my moves in front of the mirror. That's where i practise my facial expressions for flirting, i look really cute when i raise my eyebrows, it works every time!

Thursday, December 07, 2006


I got weighed today. I'm nearly back at the weight i was before we went to Austria. I'm doing really well with my eating and drinking, so that's really good and positive! wooopeeeee!!

CDT xmas party

I went to my cdt xmas party this afternoon. It was really good fun. Katherine played with me lots and even took me into the sensory room. My paed saw me for the first time since Austria, she said i'm looking really well. I was really tired though and got a bit irritable. Father Christmas gave me a really beautiful pop-up book, thank you Father Christmas!

Mommy and i got the bus home. She made me leek, sweet potato and carrot for dinner. She didn't blend it for so long though so it had lumps in it. I really enjoyed it. I like lumps, i handle them fine. It was really tasty. I was just so tired though and my eyes were closing while i was eating so i went to sleep.

Wednesday, December 06, 2006

Makaton & Lumps

Mommy was at a course all day learning Makaton. She must've enjoyed it cos when she came home she started signing straight away. She signed 'drink', 'food', 'come here', 'sleep' amongst others. It means nothing to me right now but sure i'll get the hang of it.

I had sweet potato for dinner. Mommy put bits of bread in it (?) to see how i'd cope with lumps and if i'd chew. Well, it was easy, i chewed easily and really enjoyed it. It fulled my tummy up a bit quicker though, think it was cos of the bread. i think i'm ready to move onto lumps, not big hard ones... smallish soft ones.

Saturday, December 02, 2006


I went swimming today for the first time in ages. I've been away a lot so haven't had a chance. I'm wearing a little wetsuit now to keep me warm. I loved kicking in the water. Everyone said how much i'd grown and noticed the tube was gone, it's really nice cos every time i'd come back from a swim a new tube would have to be put in cos the tape would get wet and lose it's grip. There are only a couple of lessons left then i stop until january.

Friday, December 01, 2006

You can't say Macleans without smiling..!

Mommy's started brushing my teeth. There's no way i would have let her when i was tube fed, but now i'm fine with it. I really like it when she does it, she massages my gums and the toothpaste tastes like bubble gum.

I'm changing a lot. I don't sleep as much as i used to when i was tube fed. I 'shout' for my food now whereas before i knew i'd get it and was never really hungry enough anyway. I'm eating porridge for breakfast, then i have a taste of something new for lunch... followed by a large jar of vanilla or chocolate custard. At about 3 i have another jar of custard, then for dinner mommy makes me something. I don't always like it though (no offence), so i have my custard again. I'm getting all my nutrients from my milk. It's special milk that has everything i need. I'm showing more interest in other flavours... but just taking it slow, can't expect to run before i can walk! Once i've managed a whole bowl of another flavour i think the custard may fall by the wayside... so i'll enjoy it while it lasts. It reminds me of Austria and I liked Austria. I hope they take me back there some day.

Monday, November 27, 2006

Goodbye Montrose

We left Scotland today. We had a long wait at the airport, i played a lot with jenny. Dawn made up a tune that i clap to, whenever someone sings it i know i must clap and smile... it's like 'instant dancing on tap'. Jenny was doing that a lot with me.

It's been a funny, action-packed weekend. Thanks Suzie and Jeremy for an incredible wedding.. and thanks everyone for loving me so much (easy to do, i know.. if i should say so myself!).

Sunday, November 26, 2006

The day after the night before

No-one's very good company today, dunno why, think they drank too much? There's been a huge palava with the key so we're moving to another hotel. I don't like the place we're in now. The staff are horrible. We all had a really nice lunch at our new hotel, then went to see suzie and her family for post-wedding drinks.

There was a nice, warm fire burning. I was drawn to it... mommy kept moving me away. I would've touched the flames if i could. I had really good fun, all the kids played with me so nicely. I think it's time i saw children on a regular basis. Don't get me wrong, i love mommy and daddy's company... i'd just like to make some new friends.

Saturday, November 25, 2006

Suzie & Jeremy's wedding

We were late for the wedding, can you believe it!? We drove in behind the bride. That was because mark and dawn locked their key in their room and the limes guest house we were staying in weren't interested in helping them get it. So dawn had to borrow charl's stuff to wear. Thank god mommy didn't do that cos she wouldn't have fitted in any of the girl's clothes (mommy ate all the pies).

Daddy and i were the last ones in, suzie had to wait for us to go first. I was so embarrassed, but on the positive side i got to see the bride before anyone else. She looked beautiful, a perfect winter bride.

I had an absolute ball at the wedding, the food was delicious, i danced with the bride's mom and emma too. There were lots of kids there who played with me. I didn't get a massage though, Binx massaged all the lady guests at the party, i wasn't so lucky.

Mommy went off for some photos at one point. She was posing with all her girl friends on the steps, while suzie was sitting below them. Silly Jenny knocked a whole glass of champagne all over the bride, can't take her anywhere. Luckily it wasn't red wine.

Daddy and I left the wedding at 10pm. We were both very tired, with the music and all it was too stimulating for me, i didn't want to sleep. Mommy got home around 1.30am i think with everyone else. It was great to see everyone again, they're all mommy's old school friends, she's known them for about 18 years. that's a long time isn't it!

Friday, November 24, 2006


Charl and Binx have been staying, we all left for scotland this morning. Mommy only packed when she got up so she made us all late. We nearly missed the plane, i found it really fun cos mommy was running with me when i was in my buggie.. we went really fast! We saw dawn at the airport, she was also late... so mommy relaxed, cos if dawn wasn't on the plane, then we were safe!

We just made the flight, it was really quick. I met jenny for the first time, she played with me lots. I really like jen but i still prefer blondes (it's not my fault, i'm half italian).

We all went for a dinner that night to meet all the wedding guests. It was nice to see suzie again and i also met jeremy for the first time.

I'm looking forward to the wedding tomorrow night. Hope we're not late cos we were late for the dinner and this is getting embarrassing.

Thursday, November 23, 2006

Tuesday, November 21, 2006

3 weeks tube free!

I've been tube free for 3 weeks. It feels a lot longer than that. I'm doing really well. I especially like custard puddings, chocolate or vanilla flavours. I'm still waking at night to drink milk. We're all quite tired. But what a small price to pay.

Monday, November 20, 2006

The bride and groom..

.. came to stay. We're going to Scotland on the w/e for their wedding. Really looking forward to it, i've never been to Scotland before.

Friday, November 17, 2006


Mommy's been trying to get me to drink milk all afternoon. I've been rejecting it and she's finally figured out why. it's S-O-U-R!!! OK, she had no idea but it took her long enough to figure it out. She had a sip and realised. i ate more to compensate, but was really thirsty, when she gave me fresh milk i gulped down about 150ml in one go!

Hope that was a one off. (tut)

ps. mommy, please taste the milk before you offer it to me?! tenks.


I went with mommy to a makaton/fun class today at the cdt with Tim, my SALT. it was good fun... i've got lots to learn. Makaton is a form of sign language. It will help me develop my speech. I'm shy now... i'm putting my hands in front of my eyes when people look at me, this is a fairly new thing, it started in austria. It's kinda cute (if i should say so myself).

I was shattered when i got home and had a 2.5 hour sleep. Mommy's friend that she worked with came over for lunch. I woke up after they'd eaten. It took me a while to get over my shyness... but once i did we had a really good time. I was really hungry when i woke up, i gulped down a lot of milk and had a whole big jar of chocolate custard. nyummy.

Wednesday, November 15, 2006

The proof is in the pudding

This video was filmed on the 2nd day of weaning. I wasn't so good at keeping the food in my mouth but luckily daddy helped me out. I'm much more nifty at eating now... but you'll have to wait for the next movie to see that.

ps. You need sound.

Snug as a bug in a rug

Tuesday, November 14, 2006

Why should i?

Why should i hold the bottle myself? I've never had to work for food in my life! Mommy or daddy used to feed me by tube. I didn't have to swallow, suck or anything like that. It just went straight into my tummy. Now i'm working a bit, i'm having to suck on a bottle, swallow, that's enough! Mommy tried to show me how to hold the bottle myself. I know how to hold it... but i don't want to! (tut)

Eating prepares you for so much in life. For speech, development... i'm definitely not wanting to work too much for anything. Like with my toys, i would rather sit and wait if i can't be bothered to work something out.. or to fetch something.

Mommy will get me holding the bottle.. knowing her. But slowly does it. One thing at a time. I've just learned to eat for pete's sake.

Onwards and upwards

I'm still drinking and loving custard! mommy's going to try introduce other flavours slowly.. cos man cannot live on custard alone. I'm drinking lots throughout the night, i feel hungrier then.

It's nice to be home but gees our flat is small. We were spoilt for space in Austria, can't wait to move. I'm bouncing off the walls, literally!

Sunday, November 12, 2006

We're home!

We came home today. We're all exhausted, it was very tiring, but so worth it. I'm eating whole big jars of baby food now, as well as drinking milk. I'm still waking up a couple of times in the night for a milk feed. My whole routine has changed... but we'll find the new balance.

I'm attaching loads of pics from our last week in Austria.

The first one is of me and daddy with Professor Marguerite Dunitz-Scheer. She's the one who got me eating again. Thank you professor.. you've changed my life!! She invited us to watch a musical that she directed. The stars were all children. I loved the first half, but slept through the second one!

Thursday, November 09, 2006

We're going home!

Not much has happened in the last couple of days. I'm still drinking and eating bits. The prof said we could go home. I'm happy in myself, happier it seems (if that's possible!). They said not to worry about volumes or weight. I'll eat and drink what i need. The tube is a distant memory now, never to be visited again!

Thanks everyone for your support, I'll see you soon (we're back in London on Sunday). i can't wait to show you the new me, my soft cheeks with no eczema from the tape... and can't wait to show u how much my vocals have come along.

I'll upload some pics when i'm back in london.

Auf wiedersehen!

Tuesday, November 07, 2006

Day 9

Weight: 9.20kgs

I haven't cried from hunger at all. I only cried for 2 nights in a row. Not as bad as mommy expected. I'm still only managing to drink 250ml per day.

I had 2 therapies today, o/t and speech. I didn't want to do much in either. I'm not feeling as strong. The therapists say that the 2nd week is the hardest for us children.

We went to the picnic. I was fine for a bit but then started making some noises. the prof asked mommy what she thought i wanted. Mommy didn't know! I'm doing new sounds now, so mommy has to learn them, it's a bit like having a newborn! Mommy gave me some bottle and i drank about 50ml in one go. The prof said some children leave as drinkers and get their calories that way, some leave as eaters, some as both. She said they're still not sure what i am. I'm enjoying drinking more at the moment it seems. That's ok. Mommy can make any type of food liquid for me to drink... i have no doubt i'll eat, but maybe not yet. As long as i'm doing one or the other it's ok. The prof said i'm an 'A' student. I'm doing really well. I have lost a lot of weight but what's more important is i'm ok within myself, which i am.

Mommy and daddy have learnt a lot. She said it's very important that i don't realise eating makes them happy. If they react when i eat, like get excited and praise me i'll realise the game i can play. It will become a battle. If they act like they don't care that i'm eating, then neither do i. I will eat cos i'm not being 'watched'. It's psychological.

I'm not sure when i will manage to drink more volume. The prof and therapists said it's like beginning to run. you need time to get your muscles going and strong. I haven't eaten properly since birth so of course it's going to take time. Mommy and daddy have also noticed that i'm wiping my mouth after feeding, as if i don't like the feeling of food on my mouth. mommy was concerned it was a sensory issue, but the therapists said it wasn't. They said my mouth has 'woken up' to new sensations, and i'm not used to them. She said it's the same for others, at the beginning of summer.. when you first put your feet on the grass, it tickles, it's not unpleasant.. just that your senses are awakened.

Sorry no pictures. I'll try blog some soon. Please don't worry about us (and thanks for your comments!), it's going really well. we are all coping just fine.

Not sure when we are leaving. may stay the full 3 weeks, it totally depends on how the next few days go.


Monday, November 06, 2006

Day 8

I managed about 280ml over night. I’m feeling more myself now, i want to attach some pics but i'm having problems at the internet cafe. agh. i'm losing weight still but look gorgeous as ever and am still smiling. I'll try come back another time to post some pictures. sorry everyone!

Sunday, November 05, 2006

Day 7

I managed 270ml in 24 hours. Not really enough but by my standards it’s pretty good! I’m drinking a milk called Aptimel. It has lots of calories and loads of vitamins and things. I’m not really wanting to eat at the moment, but I guess it’s cos I’m full up on milk. I know mommy’s relieved, she’d rather I was drinking, than eating.. eating will come. I woke up every hour in the night for some bottle, I’m not holding the bottle myself, I’m wanting it fed to me. Mommy’s always been told that I’d lost my sucking reflex and that I’d learn to eat before I drank. She’s going to write a letter to my old paediatrican and speech therapist, just to let them know what I’m doing and to tell them about Austria. Cos there could be other kids like me who’d benefit from it. I think they’ll be shocked to hear I’m drinking from the bottle again. Mommy certainly was! They were trying me on beaker cups and I just didn’t like it, I find the milk flow coming out the bottle much easier to handle. I’m even managing to swallow and breathe all the same time.

It’s so nice going out for walks without worrying about tubes, carrying syringes and all that malarkey. All we needed was my bottle. It was AMAZING! I also don’t have the tube bothering me anymore. I can’t believe that I’ll never go through that again.

We had a speilessen at home today. (that’s the name for the picnic), translated it means ‘play food’. I licked my fingers a bit but didn’t eat much at all. But that’s ok. What’s important is I’m just left to get on with it and make some mess.

Saturday, November 04, 2006

Day 6

Happy Birthday India and Tara! You're the big 1 today, such a special birthday, we're all thinking of you lots and lots.

I'm drinking from a bottle! I've got my sucking reflex back.. can you believe it! My muscles are still quite weak but they'll get stronger and stronger, the more i drink.

Mommy's not feeling so angry anymore. The reason the professor knows so much is cos she's been researching it. The thing is... these things have been said to mommy in the past, and they've all been proved wrong.

'luca has lost his sucking reflex'
'luca would rather starve than eat'
'luca will learn to eat before he drinks'

Mommy will just make everyone aware. She's only angry that they said those things, without having full proof. If they had full proof, they would see that they are wrong.

Anyway, no point on dwelling on it... i'm drinking and it's incredible!!!

Friday, November 03, 2006

Day 5

Weight: 9.28kgs

I had a really bad night. I only went to sleep at 11pm, woke up at 1am. Didn’t sleep again until 5am. I was crying the whole time, I was writhing around and didn’t want mommy or daddy to hold me. Mommy spoke to the therapists about it. They said I’m going through horrible times. I’m experiencing hunger, proper hunger. I’ve never been through that before. I don’t know what it is. Soon I’ll realise that food takes the hunger away.

I had speech therapy today. She said the muscles around my mouth are weak. That when I take sips from a beaker I don’t close my mouth around the spout properly. She’s given mommy and daddy exercises to do with me, hopefully they should help to strengthen them. I’m drinking from a bottle again. The professor said there’s a 50/50 chance that I’ll get my sucking reflex back. We’ll have to see. It’s a good bottle though cos when I bite some milk comes out. I had the picnic after that. I didn’t eat much, just a bite of a biscuit with some chocolate on it. I didn’t have my o/t. I was too tired after not having slept last night. It’s snowing outside so I’m going to get all cosy in a minute and have a nap.

Daddy’s changed his ticket and is staying another week. Mommy and I definitely need him around. It’s all been ok up until now. I don’t think I’ve hit rock bottom yet. The good thing is that I’ve been eating bits. I managed one jar of custard baby food yesterday and about 50ml of milk. That’s a lot more than a lot of kids have in their first week. It’s going to get a lot harder though, could tell from what I went through last night.

Ruby and Mabel have both left. It’s just me now unless another child starts next week. They’re both eating and drinking after being tube fed for 3 years. Good for them!

Thursday, November 02, 2006

Day 4

I'm 48 hours tube free. I'm definitely not starving. I'm eating little and often. I'm enjoying food so much. I love custard. I love chewing on biscuits too. I don't miss the tube one little bit. Mommy and daddy are quite shocked with how well i'm doing. They didn't expect results so soon. Not sure how long i'll have to be here for. All our therapies are cancelled today and tomorrow cos the therapists are sick. But I'll still have the picnic every lunch time.

I can't blog every day, but please keep checking on my progress!

I'm losing weight, but i'm ok within myself and that's what's important.

Wednesday, November 01, 2006

Day 3

Didn’t get weighed today.

We went to meet the professor at 9am. It’s a holiday here but she wanted to see how we were doing. She got some food out and told mommy or daddy to try feed me. I had about 7 spoons!

We had a long chat. She said that in Austria no children are allowed home with ng tubes anymore. She said it’s a SHORT-TERM solution. Unless the child can’t swallow their saliva, or has poor lung function, there is no reason why they can’t eat. She said that temporary gastrostomy tubes can be used instead, but even then there is a plan as to when the tube will come out. She said there should’ve been a clear plan for me, ie when I would come off the tube. Not this ‘waiting to see what happens’ business. She said too many doctors are happy to put the tube in, that’s their job done, they’re feeding etc. But no-one wants to take responsibility for getting the child off the tube. Thing is.. like I said before, tube feeding can be an addiction. That’s why some children come off them, and others don’t – just like some people can enjoy some wine, without being an alcoholic. She has been researching this for 15 years. She said that it is totally wrong. The doctors, dieticians all having control over how much the parents give their tube fed children. The parents lose control, and so do the children. Often children are over-fed. A lot of children who are sick when they are on ng tubes are just really full up. That all stops when they eat properly and can control whether they want more or not.

Mommy was a bit confused as to when to give me food, since they’re not really allowed to offer it. She said mommy must read my signs. If I open my mouth and look hungry mommy must quickly put some in my mouth on a spoon. I need to get a taste for it, once I realise that it makes me feel better… I’ll want more and more.

I’m not feeling so good. I’m grumpy and crying a lot. The prof said that I could be getting headaches and all sorts of things. But it’ll go and soon I’ll start to feel better.

I think mommy’s a bit angry about it all. She was talking to another lady about the time the ng tube was first inserted. They weren’t told what may happen. That their children may not want to eat orally, for a very long time. There is not much help/guidance. It seems no-one wants to take control, take responsibility. The parents are discharged and they learn how to tube feed. But then what… then it becomes a battle with therapy and with feeding. The longer the tube’s in, the harder it can be to get it out. It’s too ‘easy’ to feed by tube, too ‘easy’ to recommend a gastrostomy. No-one seems to tackle the all important question of why are we still being tube fed. The parents are doing everything ‘right’. How much more can they do? It seems this Austrian therapy works, it’s called ‘controlled starvation’, but so far I haven’t totally starved. I’ve had bits… I guess other kids don’t. But it works, children are coming in tube fed, and are leaving happy and are feeding like any other child. A lot of them no longer vomit. I know more and more children are coming from the UK and I hope that the UK invites the prof to teach them, to show them the mistakes that they are making. A doctor at Great Ormond Street is already showing great interest. It all makes a lot of sense.

Mommy remembers ages ago being concerned with the volumes I was receiving. She didn’t know how much I’d want, surely i should just eat when I’m hungry like everyone else? Why should i get a set amount every day, no child does! But mommy was told to do it, that’s how it’s done. She accepted it, and those questions fell by the way-side. 15 months later I’m in Austria being weaned off a tube that was put in me at birth, without any clear plan as to when it would come out. That is wrong. The reason it’s wrong is because most children who come to the clinic leave eating. The therapy in the UK can go on for years. It doesn’t work… something’s wrong there… surely? Food aversions. Children come to the clinic with such major food aversions they can’t bear to touch food. They leave eating. It may seem a drastic solution, but if children were weaned off the tubes when they are much younger (when they’re meant to), there wouldn’t be the need for such a drastic solution. None of the children are traumatised by this. They are learning about food and the pleasures it can bring. They suffer for a short period to get to that point, but the suffering we’ve all gone through for however long, having a tube shoved down our nose, the back of our throats into our stomach is NOTHING in comparison. A week of feeling groggy, compared to 15 months of tubes. I’d take the week any day.

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.