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.