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.

Fundraiser

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.

KIDS

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

O/T

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!

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.

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.

Swimming

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'.

O/T

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.

Physio

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.

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.

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.

http://www.onetruemedia.com/otm_site...edium=text_url

KIDS

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.

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.

O/T

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.

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.

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!

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?

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. :-)

Finally...

... 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.

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.

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.

Tube Weaning Programme in Graz

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

http://www.kinderpsychosomatik.at/home/en/introduction.en.php

Swimming

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!

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.

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.

Out-patients

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.

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.

Baby's got blue eyes

Buongiorno!

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...

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. :-(

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 ;-)

Coinkidink

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'.

http://earbuddies.fresca.co.uk/

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.

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!

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.

... 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...

X

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.

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.

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.

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!

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.

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.

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.

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.

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!

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?

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.

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.

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 :-(

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?!

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.

DLA

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.

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...