Saturday, September 30, 2006

Tube Weaning Programme in Graz

This is where i'm going end of october. Have a look!


Daddy took me swimming this morning. I loved splashing about, got to figure out how to 'blow' under water. I guess it's quite a similar skill to when i spit my food out, but it's weird when your face is underwater, just got to get used to it. We've just booked another 10 weeks which is brilliant, i love my saturday swimming sessions. It's going to be winter soon though so we'll spend a bit more time in the warmer pool than the bigger pool. the warmer one isn't as big but that's ok, i'm not swimming lengths just yet!

Friday, September 29, 2006

First session with KIDS

Helen from KIDS came around this afternoon. I was asleep when she arrived so she was asking mommy lots of questions about my development. Seems i'm doing pretty well. When i woke up we played a bit. I think i'm really going to enjoy these sessions, she's going to come once a week for an hour to do developmental 'play'. i think i'll learn a lot and the best thing is i'll get to try out all these new toys that she'll bring along.

Fundraising Night

Here's the flyer that Emma designed for the fundraising night, i really like it. i know you and Natalie have been working hard to get this thing going. Thanks so much. Wish i could come that night but mommy reckons it'll be too smokey and noisey (tut). Whatever money you raise for us will be a big help. I'll thank you personally when you both come around to ours for dinner :-)
Thanks to all the sponsors too.

Wednesday, September 27, 2006

Speech and food therapy

Tim did a home visit today. I was sleeping when he arrived but woke up pretty fast. I like Tim. I especially love showing him what new sounds i've learnt. We did food play, with nutella, cream and rusks. I'm fine bringing food to my mouth but then i spit it out. Tim reckons my food aversion's not there anymore which is good... but got to get around this spitting thing. See, thing is.. I LIKE spitting at the moment. I like tasting, swallowing bits and then SPITTING it out. It's fun! Mommy thought I'd be up for hours on a sugar rush, but i obviously didn't eat enough nutella cos i'm tired so am going to have a quick zzzzz.


Mommy heard from the professor. She said we could be outpatients. We'll be spending the whole day at the university with the team. Our day will start with an hour of psychotherapy. They will look and monitor my behaviour, study my relationship with mommy and daddy and my surroundings. They want to identify the level of my dependency on them, and my expectations of them. we'll have food play at lunch time, then therapies in the afternoon, this can be speech & language, O/T or food play again. I think they'll decide which programme to put me on once they've met me. It's going to be a very challenging time, the thought of being tube free does excite me though. i still get very distressed when mommy or daddy put the tube in, it hurts and makes me want to be sick.

Tuesday, September 26, 2006

At home with mommy

Mommy and i are both sick. not sure who got it first but we're both coughing and sneezing. I'm going to the doctor just now. don't feel very well. neither does mommy.

On a positive note i'm starting to understand little things. When mommy asks me for a kiss i give her one, when daddy asks for a kiss in italian i give him one too! also, when mommy and daddy say 'bye bye' or 'ciao ciao' i wave at them. sometimes i wave with both arms cos i can't decide which arm to use!

We've booked our flights to austria. we leave on the 29th october. Just have to sort out accommodation but mommy waiting for professor to say if we are going to be inpatients or outpatients. I'm not eating too much at moment. not wanting food on a spoon at all, but will take some off mommy's finger. i had some chocolate ice-cream last night which was delish.

Sunday, September 24, 2006

Saturday, September 23, 2006


Mommy and daddy went to a concert last night. They went to see FreshlyGround. They're a south african band. Nonna and nonno looked after me while they were out.

Daddy took me swimming this morning, but we went all the way there and he realised he'd left the parking money at home (tut). so we had to come ALL the way back home. But instead of the swim i had a really nice, long bath.

Here's a pic of me giving daddy a kiss!

Some more pics, mommy and me grinning at each other..

And some other pics...

Friday, September 22, 2006

Nonna and Nonno come to visit

They can't believe the change in me. I'm doing so much more now and we're having a lot of fun together. They're not here for long though, they go tomorrow. :-(

Thursday, September 21, 2006

People really care

Mommy's friend mel wants to organise a brain storming dinner next week, to discuss how we all could raise some money to go to help pay for austria. Dinner guests would be mel, stu, jim, al, flora and tom. how nice is that?

Mommy didn't go to work yesterday cos she had to take me for my developmental assessment. She got in to work today only to find out that Emma and Natalie had started organising a fund raising night! Mommy nearly cried at her desk when she found out, she was so touched. It's probably going to be on the 27th october, there's gonna be a raffle too! watch this space and i'll let you know.

It means a lot to me and my family that you're all doing this for us.

Thanks everyone, when i've learnt to talk i'll thank you properly, but you'll have to make do with one of my slobbery kisses instead! Oh and when we're back from austria we'll have a party to celebrate... we'll start with a bonfire and burn all my feeding tubes ;-)

Wednesday, September 20, 2006


Mommy called KIDS. what a coinkidink... i'm next on the list! Helen from KIDS is coming next Friday to meet us. If you wanna know more about who KIDS are look at the links. They're gonna come once a week for an hour, to 'play' with us. They'll give mommy tips and ideas for developmental play in a fun environment. Can't wait...!!

Ear buddies

A friend of mommy's that she's met on a support group has asked about ear buddies, the funny splints mommy put in my ears to fix the appearance of them. Look, they've used her comments on their website! mommy's famous!!! hehe

you have to go to 'what parents say'.

if you look at the pictures on the home page, my right ear was a mixture between a stahl's bar and a lop ear. my other ear was just pointy, there isn't a picture of one though.

Developmental Assessment

Just came back from seeing my paediatrician. She had students with her and she wanted them to learn a bit about me. She was comparing me to her previous patient. she asked the students what i had, that that other patient didn't have. they said i'm 'aware' and 'motivated'. how good is that?! she was saying how important those skills are for development, she couldn't believe how much i've progressed. They did an assessment and i'm 12 months developmentally, so i'm 2 months behind. Mommy saw tim on the way out (my speech & language therapist) and he said i'm 9 months for speech. He's right, mommy read over the notes and they asked her if i 'babbled', which i do... but in the notes it says 'babbles with many vowels and consonants', i don't do that... yet! She read through the notes though and everything else is right. so i'm generally 12 months, speech more delayed. The fact i don't eat can hold my speech back. Eating is good excercise for tongue muscles, which in turn help you speak. So we must work on my speech more, but don't think there's much more mommy and daddy can do other than what they're doing. it'll come to me. I even picked up a dice using my pincer grip. how good is that?!

She's going to try and claim on the nhs for austria. Don't think we'll hear back in time though. We also discussed getting my testes sorted out. one seems to be descending but the other isn't. also need to look at my blocked tear duct. Mommy's asked if she could cancel occupational therapy. It's too much right now, too many appointments and mommy can get information about how to help my development and skills. I'll go at my own pace, but with mommy's guidance. We're on a waiting list to have developmental 'play' with someone from KIDS, think that'll be more than enough, don't need O/T on top of that. Mommy's gonna call KIDS and chase, find out when they can start.

Tuesday, September 19, 2006

What a mess!!

Here is a messy pic of me. I realised that if i clapped my hands while i had food all over them, the food would spray all over mommy and me. I found it really funny. Of course, who wants to put food in your mouth when you're having this much fun making mess!

Monday, September 18, 2006

Austria... here we come!

I'm a bit confused at the moment, i'm not getting full feeds and i'm a bit hungry. I'm getting fed solids but am spitting them out, doing the same with water. it's a bit of a game with me. Mommy's been in touch with the professor in austria, she's happy to help as much as she can over email. Thing is... it's best if my tube comes out, to keep it out. But not really safe to do that without medical supervision. I could keep going as i am, but when would i come off the tube? I think the time's right now. I'm definitely interested in food, it's just a bit hard for me to let go of my tube. It's been a part of me since birth, like an extension of myself. It's like me telling you to eat by tube. You've eaten through your mouth all your life so why should you now eat by tube? that's how i feel. Mommy isn't confident enough to do it on her own. She thinks Austria is the best bet for me. Granny Stella is helping mommy with some money for their new house, but it'll go towards Austria instead. Thanks Granny Stella! It's only money and you can't put a price on me eating. We're booked in to go end of October. Maybe we'll try go a little bit sooner, we'll see.

Sunday, September 17, 2006

... kissing Cicilia... kissing me!

Luca, Laura and Cicilia were in London for the weekend. They live in Milan. They came to ours for dinner. I wasn't in a very good mood. I'd pulled my tube the night before and it was left out all day. I didn't eat much or drink much, so mommy put the tube back in. If i could drink more fluid it would be ok to take the tube out i think. But i'm only having sips at the moment, nothing substantial enough. Mommy doesn't want me to deyhdrate so...

Saturday, September 16, 2006


I've finally figured out what kissing's all about. Mommy's been giving them to me for as long as i can remember. I've just realised you can give them back! I gave her a goodnight kiss last night, well... she was so excited she demanded about 15 from me? geeeees. I've just got to figure out how to close my mouth though. I gave her a nice, big slobbery one this morning too.

Friday, September 15, 2006

Breakfast vs. Dinner

I had quite a lot of dinner last night, about 11 spoons. So that's good. It seems i enjoy eating more at night time than in the day. Dunno why. Maybe cos mommy and daddy are both home and we all sit around the table? It's good fun, we chat and stuff.

Thursday, September 14, 2006

Occupational Therapy

Phew that was a busy session. We did a lot of play, with building blocks. She was trying to get me to put them in a container... i was really good at bringing them out... not as good putting them back in though. Mommy's got to buy some building blocks for me, hopefully at the w/e. She did ask at the last session if she should buy some and was told that i wasn't really ready.. but this time i am apparently... so maybe that's a good thing. I have to work on my pincer grip, i'm not very good at picking up really small objects. She wants me to pick up raisins. Another lady from KIDS also suggested that but what if i put one in my mouth, and choke... then don't want to eat. Too risky i think. I could lose all my confidence with food. Choking is traumatic. Raisins can wait! Also, when she wanted me to put my hands in bowl of beans (the dry kind!), i didn't want to. She said i could have sensory issues, but I'm totally fine with messy play. ok, grass and sand on my feet feels funny... but i just have to get used to it. I don't think i've got sensory issues. But, time will tell. She gave mommy some notes to refer to, to encourage my fine motor skills. Mommy noticed that it mentioned play dough. aunty kir is sending mommy a recipe to make it, apparently it's great for fine motor skills. Play dough is non-toxic so if i eat some i'll be ok. although it's very salty so i probably won't like the taste.

I've had a bad day. my milk volume's been cut and i'm not happy. I'm hungry. I know mommy and daddy want to see if it'll instigate hunger... they're gonna keep giving me the smaller volume over the w/e until next week when i've got an appointment with my paed. At the moment the decreasing thing seems to be a bit counter-productive. I'm too irritable to want to eat solids. but it's the first day and mommy's school motto was 'perseverance' so i think that's what she's gonna do (sigh). It's a learning curve, for me, and for mommy and for daddy.

Wednesday, September 13, 2006

Good news x 2

Things are progressing well with our new house. Mommy and daddy managed to get some money off the asking price so that's really good! Also, we met my paediatrician, we're cutting my milk feeds down a bit. I'll be weighed weekly to keep an eye on things. It'll be a bit of trial and error really... see how i go, but hopefully i'll feel more hungry and start to associate my food with being full. I'm doing well though, had a good 10 spoons of baby food for dinner last night, had 5 this afternoon. I was a bit tired though so had a little sleep straight after. I'll try eat some more later, once i've woken up properly and had a nice bath.

Thank you Suzie

Suzie sent me a wash cloth all the way from new zealand. it's great, it has finger puppets on it! Mommy sounds like a bit of an eejit doing a 'puppet show' for me, nevermind... practice makes perfect.

Thank you suzie, i needed new bath toys and i love the one you sent!

Tuesday, September 12, 2006

Cranio-Sacral Therapy

Had cranio-sacral therapy for the first time in ages. Dascha, who usually does it, has just had a little baby. She liked my name so much she's called her son 'Lucas'! Val did the session with me today. It was good, i didn't want to sit still with her but she still managed to work on me. I stood in front of their mirror for ages. Mommy's been looking for one for home, the one we've got isn't really safe enough. Hopefully we'll get one soon.

Monday, September 11, 2006

Dietician and speech

We met my dietician today to discuss milk and volumes. We're slowly going to introduce a new milk. It has more calories so will require less feeds/volume per day. It may make me a little sick, so that's why we'll take it slow. We're aiming to have just 3 feeds of milk via ng tube/day. That should coincide with my solid feeds, give me longer breaks to experience hunger too.

I didn't really wanna eat that much in speech therapy. I was more interested in showing tim everything i can do, all at once! i love going through my repertoire. I'm learning little things every day so my repertoire's gonna get quite long by the looks of things. Mommy tried me on a bit of food when i got home. I had a few more spoonfuls of strawberry yogurt. She hasn't really been putting enough on the spoon, tim said to put a bit more on cos it'll help me swallow it. I've mastered the 'b' sound quite well now, so need to learn 'p', 'd' and 'm'. I'll get there.

Still eating...

I'm not going to blog every meal i have, cos i think that'll bore you a bit. Just assume i'm still eating unless i tell you otherwise :-)

I'm going nice and slow, don't want to shatter my confidence with food. small steps for me and one day at a time.

Sunday, September 10, 2006

Squashed bananas

I pulled my tube out last night. I didn't even get a full feed but mommy didn't want to put it back in. This morning i had mashed bananas for breakfast. I had about 10 little spoons. It was delicious. Mommy added a tiny bit of the cream i love so much. I needed a milk feed though so my tube went back in, i hardly cried cos daddy distracted me.

Saturday, September 09, 2006

Primrose Hill

We met mel & stu outside kentish town station and walked all the way to primrose hill. I loved it... we passed through camden market, there were loads of different smells, noises and things to look at. We took a short-cut along the canal, then found the restaurant where we met tom, jane and nathaniel. i had a really good day. Mommy didn't bring a milk feed along, but she had some baby food. I had quite a bit throughout the afternoon, all off her finger though, but that was fine.. she washed her hands!

Here's a pic of me and nathaniel playing tug 'o' war with mommy's necklace. I won, but that's only cos i'm a bit bigger than him.

Friday, September 08, 2006

Yum Yum!

We went to great ormond street today to meet a gastroenterologist to discuss a gastrostomy. Mommy told him i'm starting to eat so i probably wouldn't need one. We came home and just before my milk feed mommy thought she'd give me some food. She just gave a bit to me while i was sitting on the couch. I had 7 spoonfuls of 'cottage pie' baby food. It was yummy!

Thursday, September 07, 2006

Did i or didn't i?

When mommy came home from work i had a little afternoon sleep. At about 5 she tried me on food again. I did it!!! She gave me some finger fulls of whipped cream (think she's playing it safe!)... then i had some apple puree. She gave me the apple on a spoon. At first i tried to take the spoon away from her, like i used to do... but when i saw her having some i wanted some too. The apple tasted a bit funny, mommy mixed it with some cream and i really liked that. I had about 6 little spoonfuls. Mommy sent daddy to the shops to buy me lots of different flavoured babyfood. I also had a little bit of mashed potato at dinner time. Mommy gave me just one taste, i was really tired by then so wasn't really in the mood for eating... i rubbed potato in my eyes! Wonder what I'm gonna try tomorrow?

Wednesday, September 06, 2006

I love cream!

i ate some cream off mommy's finger, for the 2nd time in my whole life. I had whipped cream. it was delicious...! i had about 10 'finger' fulls of it. I didn't feel defensive or uncomfortable at all, in fact i wanted to taste it, i opened my mouth for her beautifully, it came so naturally. Mommy stopped though, i wanted more but i guess she wanted to get out while the going was good! Maybe Tim kickstarted my tastebuds? Maybe i'm getting my confidence back? Maybe mommy's more relaxed... or maybe i'm just preparing myself. Maybe i'm ready to start eating? Who knows, we'll see how i'm feeling tomorrow... but it was a huge breakthrough. If i carry on like this we won't need to go to Austria after all. Wonder what other flavours i'm gonna get to taste! Wonder if the cream will make me have funny dreams.. or is that just cheese?

I'm a clever bunny

Mommy's been copying everything i say for a little while now, but adds a new sound at the end of every sentence. well... i copied her .. 3 TIMES tonight..! I finally got the hang of it.. well, sort of... cos after the third time i didn't fancy copying her, but how clever am i??!

I also sat on the grass today. for some reason mommy always has a blanket down so i've never really felt the grass before, when i have been exposed to it i haven't liked it cos it tickles my feet! but i was fine ... i flinched a bit when she put me down but soon forgot about it. Funny, mommy coming from africa you'd think she would put me straight on the grass right away.. maybe she's been living in the UK too long?! We had fun playing with the bubbles. It was windy though so i couldn't catch them.

Tuesday, September 05, 2006

Physio and speech

I had a really good session today. Tim showed me a picture book of animals, and also blew bubbles for me. I love trying to catch them. Tim gave me some wotsits to eat, they were delicious but i didn't like it when they broke off in my mouth. He gave me some nutella too, on a spoon. I let him feed me some and didn't block him and get defensive like i do with mommy. I can sense mommy's stress when she tries to feed me. She's trying to be fun about it but she doesn't fool me. Mommy was really pleased seeing me eat some chocolate, i enjoyed it a lot. Mommy's feeling a bit more encouraged, hopefully she'll relax a bit more now in feeding sessions.

Katherine made me stand quite a lot, i don't mind that cos i'm really into standing at the moment. She made me put one foot on a tiny step, i have to learn to bear my weight on my back leg, at the moment i'm putting all my weight on my front leg. That'll help me get ready for walking. We also played in front of the mirror. I love mirrors and seeing my reflection. Still waiting for daddy to put one up on the wall for me. (tut). Don't have physio for another 3 weeks. We're all having a little break. Katherine said i'm doing so well we can just concentrate on what we're doing for now.

Monday, September 04, 2006

Tim visits us at home

Tim, my speech and language therapist, came around to do a home visit. I was sleeping when he arrived so wasn't up to food play. But tim blew some bubbles for me and showed mommy how to get me to interact. I don't really copy mommy so well, but i love it when she copies me! Tim left and when mommy wasn't looking i knocked over all the bubble stuff, my hands were all slippery and i was sliding on my play mat. It was loads of fun but mommy cleaned it up before i could enjoy it more :-(

Sunday, September 03, 2006

Bath time

Here's a pic of me in the bath. I love bathing, especially now that i can move around, sit and play. I used to have to lie down in the bath, but since mommy bought a non-slip mat i get to sit up and splash about. I need more toys though, I've only got one rubber duck... hopefully mommy will buy me more?!

Saturday, September 02, 2006

Tube free for a bit

Daddy pulled my tube out before he took me swimming. i used to pull it out 3 times a day but as soon as the tapes getting loose mommy or daddy re-tape it, so i'm pulling it out much less now. Had the tube in for a while so time for a clean one.


Mommy got a letter and I've been granted disability living allowance. The government's going to give us money every week. Mommy fulled out some forms with a lady from KIDS. I need just that little bit more care than other kids so the money's just to help a bit, for things like petrol taking me back and forth to appointments etc. It's quite weird that i'm registered disabled, but disabled is just a word... it's really just for the care that i need at the moment. If anything changes, like if i start eating normally mommy has to tell them, cos it'll affect how much money we're given. It's quite hard getting DLA for babies like me, cos all babies need lots of care, so we're quite lucky in that respect i think. Any little things can help.

Friday, September 01, 2006

Mel & Stu babysit

Mel and Stu babysat me tonight. Mommy and daddy went out for dinner to Cantina Italia. I was fine with them, i don't get upset when other people look after me. I'm such a sociable boy, i really love attention. I played with all my toys, i really love the phone they bought me a while ago for my birthday. It sings a song and you can press all the numbers on the phone and a voice says the numbers out loud. I can call different friends too, piglet, kitten and the little dog...