Saturday, September 23, 2006

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...





































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

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.

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



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.

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.

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.

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...

Wednesday, August 30, 2006

Physio and speech

Stuart's back from holiday. He took me to speech and physio today. Katherine said i'm doing much better at trying to stand. When i play with toys on my table and i drop them, no-ones to pick them up for me. I'm not looking for my toys when they fall, so if i want them back i'm going to have to get them myself (tut). Katherine also noticed how much i love to look in the mirror. She said it'll be good to stand in front of it, so i can see what i'm doing. Mommy's going to ask daddy to put a mirror up for me, there's one in storage they can use. Tim's given some more tips on speech. He wants me to learn how to say 'more'. He said the best way is with bubbles. Mommy's to blow a bubble and then stop. If i want her to blow more bubbles, or if i look at her and make a sound, mommy must say 'mmm... more', then blow. so i learn to associate the two things. Mommy must praise me when i make 'm' sounds or 'more' sounds. Mommy must also copy sounds and actions that i do, once i've got the hang of the interaction mommy must add new sounds, like b, t and m at the end. He suggested doing this in front of a mirror. Looks like the mirror's going to come in handy.


Tuesday, August 29, 2006

Crawl? I want to STAND!!

I'm loving trying to stand at the moment. Crawling and sitting isn't enough for me right now. When mommy was doing the dishes i was sat at my table, playing with my toys. I pulled myself up to standing all on my own... luckily mommy turned around just then and saw me.. she screamed with excitement, i nearly fell over, i got such a fright! Here are a few pics of me standing, with daddy's support of course. I'm wearing my new jumper that aunty kir knitted me. It's really warm and i love the colours. She also made that gorgeous bright cushion. Thanks Aunty Kir!














































Monday, August 28, 2006

Devon

It was a bank holiday weekend so we went to visit Leigh-Anne, Rob and Matt in Devon. It took us 6.5 hours to get there, i was fine and only started moaning half an hour from the end. They live in a beautiful home with the most incredible views. I really enjoyed playing with Matt, he even gave me one of his toys! We went to a lovely restaurant on saturday, i saw cows for the first time. Mommy and daddy are going to take me to the zoo soon i think, they're just waiting for a sunny day, hope they don't wait too long. I met lots of Leigh-Anne and Rob's friends. They all loved me, I got loads of attention. There were lots of kids there too but they were much older than me. Before we drove home today we went to a place called 'the house of marbles'. Mommy wanted to have a devon cream tea. There was an amazing toy shop there, Leigh-Anne bought me a great book with pop up farm animals, the animals even make a noise! Thank you Leigh-Anne. I hope we go to devon again soon, was really good getting out of London.












































Thursday, August 24, 2006

Won't know unless we try

Austria is going to be very expensive. Mommy and daddy may use the house money if they need to... or raise the funds somehow. We're going to try and claim on the nhs but not holding too much hope there. Mommy spoke to the professor today. Her name's Marguerite Dunitz-Scheer. She is a very nice lady, mommy's looking forward to meeting her team. We're booked in for October 1st. The longest we'll stay is 3 weeks, but really don't think it'll take that long. Apparently younger children are 'finished' sooner. It's not going to be very nice being starved, but at least i won't have the tube in, scratching the back of my throat. I hope they crack my food aversion. Time will tell.

Tuesday, August 22, 2006

Look who came to visit

Marcus and Tash came for dinner. They're living in Australia now. It was the first time i met them. I loved showing them what i can do, we had quite a few 'conversations' too! Hope i see them again sometime soon, you never know, maybe we'll visit them in Australia!

Monday, August 21, 2006

Physio

Had physio today. I was very lazy, didn't really fancy doing much. I did show Katherine how i can crawl, and I'm also getting much better at standing. Mommy must make sure i kneel more and try and learn to pull myself up. We're waiting for a table to arrive that mommy ordered, think it'll be really good. It can be any height, so i'll be able to sit at it and play, kneel at it and play and stand at it and play.

Sunday, August 20, 2006

We're going to Austria!

Mel told mommy to watch a programme on tv a couple of month's ago called 'the girl who never ate'. Mommy forgot to watch it though. A 7 year old girl from the UK went to austria, they got her to eat, this is after taking nothing orally in her whole life. Well, mommy's been doing some research and we're off to Austria too. to a university in Graz. They wean children off tubes. they have a 96% success rate, dealing with all children with mild to severe disabilities. It's called 'controlled starvation'. It's going to be very stressful, for me and for mommy and daddy... but definitely worth a try. Imagine if i'm eating by christmas time, i could even try some christmas cake. The professor said that more and more children are being fed by ng tubes, this is because of the advances in medicine, more babies are surviving... ie with heart conditions (like me!), and premature babies, and a lot of these kids need feeding tubes, just like me. She said they save lives, but are a short term fix, that there isn't much research on weaning kids off the tubes.. so that's what she does. They will take my tube out and starve me, but make sure that i have all my nutrients. I won't be in any danger cos there's a full medical team there who will be keeping an eye on me. The professor said the fact that i reject food is a sign of 'intelligence'. I am being clever about it, i know the tube will feed me so why should i eat? The prof will hopefully change all that. So all you readers of my blog, please hold thumbs for all of us, and pray that i'll be enjoying christmas cake on the 25th december! thanks Mel for telling mommy about the programme, she wouldn't have known about this place otherwise.

See this story:
http://www.iqc.ca/~gweihs/family/e-esstherapie.html

Friday, August 18, 2006

Occupational Therapy

Went for my first occupational therapy session. I had an assessment. Apparently my fine motor skills are that of a 5 month old. Mommy's bought new toys that were recommended to her. They don't interest me at all, i think they're a bit too advanced for me. Surely if i'm 5 months developmentally for fine motor skills, i should play with toys for that age, then when i tire of those move onto the next? It's not like i'm gonna skip stages?! The one's mommy's bought are for 12m - 3yrs! I think these assessments aren't totally accurate. she wanted me to do stuff for her that i do at home, but i couldn't be bothered to do them then. So i get marked down, where sometimes i don't think i should! anyway...

Aunty kir is going to send mommy a recipe for play dough, that's meant to be really good and lots of fun to play with.

Wednesday, August 16, 2006

Physio and speech

I had physio today, Tim came along to work a bit on my speech too. Katherine's really pleased with my progress. I crawled for her a couple of times, but wasn't my usual busy self. I felt quite tired. I fell asleep in the car on the way home... don't think i slept enough this morning. Mommy has to try new sounds with me, 't' and 'd', as well as continuing with the sounds i can already do. Also, i've been taking a few sips from a beaker cup lately, but when i get to the 3rd sip i spit it out. Tim's told mommy to let me stop at the 2nd sip until i'm ready to move to the 3rd. Patience is the key and i must always have good memories/experiences of my food play, drinking etc, or else my aversion will be even harder to get rid of. Katherine said i must stand at a table and play with toys, mommy must give me light support and make sure i'm standing straight and not leaning to one side. I also have to practise the sitting to crawling position and especially learn to bear weight on my left side, i prefer my right side you see. I also have to learn to go from kneeling position into standing position. It's all really exciting, I'll be able to explore so much more!

Here's a picture of Tim and Katherine giving me therapy.

Tuesday, August 15, 2006

Maja

Here are some recent pictures of my cousin Maja, who lives in Zimbabwe. I hope i get to stroke a lion cub too some day! mommy will have to take me to Africa when i'm a bit older... I've been once already but there's lots to see there. I hope she takes me on a safari, so i get to see giraffes, lions and elephants like my cousin Maja has! I'm a lucky boy aren't i, i've got such gorgeous cousins :-)










































































Monday, August 14, 2006

Look at me!


















I've been trying to crawl for a little while now, tonight i did it! i crawled right across the floor without falling. Mommy and daddy are so so proud of me, they didn't expect it so soon but i've showed 'em :-)

I'm going to be into everything now, best mommy and daddy make the flat more child friendly. It's onwards and upwards now.. wonder when i'll start walking?

They're having champagne to celebrate!

Saturday, August 12, 2006

Gastrostomy & Fundoplication

I've been referred to a gastroenterologist at great ormond street. My tests came back showing i have mild-moderate reflux, so this means i have to have a fundoplication when i get a gastrostomy. Mommy's not very happy about this, it means another long operation for me. If i keep the ng tube in for too long it'll start affecting my speech, so we'll probably have to go with it. I don't think i'll be eating anytime soon, so...

here's a link that describes a fundoplication
http://www.ich.ucl.ac.uk/factsheets/families/F060261/index.html

here's one that describes a gastrostomy
http://www.ich.ucl.ac.uk/factsheets/families/F000380/

If i go ahead with all this, they're going to look at my blocked tear duct while i'm under, to save me having another general anaesthetic. Mommy's going to ask if they can look at my undescended testes at the same time, kill 2 birds with one stone.

Linda babysits














Mommy and daddy went to vicky's wedding tonight. Linda came and babysat me. She's the perfect babysitter cos she's been looking after me the past week while manny's been away, so she knows how to feed me, she knows when i'm tired and knows when i want to play.

I think mommy and daddy had a really good time, they were a bit late coming home but Linda didn't mind. I've attached a picture of Vicky and Jack, they look really smart don't they, happy too!

Feeding routine

Daddy took me swimming today. The usual teacher wasn't there and we had a stand-in. she wasn't very good, she made us do silly stuff, can't wait for the other teacher to come back. Mommy's changing my feeding routine today, i've been having 140ml of the new milk five times a day, they're now going to feed me 190ml 4 times a day. They want to have a bigger break between feeds in the hope i'll experience some hunger and want to eat something. Don't know if it'll work though, we'll have to wait and see.

Wednesday, August 09, 2006

Mommy's birthday














It was mommy's birthday. We all had a really good time. Lizzy came around early afternoon with India and Tara. We're much more aware of each other now, we're also all trying to crawl so it was a bit chaotic. Mommy and lizzy had to keep an eye on us cos we were all over the place! A few of mommy's friends came around for a bbq. We hardly saw daddy cos he was cooking. We sat on the grass and played. India and Tara are really good fun, they're sitting so well now, it's amazing how they've come on. Daddy made lots of delicious food for everyone, it was late when they all finished eating. We sat outside by candle light. I loved watching the flames. Emma (simon's girlfriend) held me and i fell asleep on her shoulder. I like emma, she's going to be looking after me for a week soon while manny's on holiday. Can't wait!

Happy birthday mommy!








































Tuesday, August 08, 2006

Cranial osteopathy

I went to the palace today for cranial osteopathy. They are closed for the summer holidays but they open for about a week mid-way to give everyone a chance to have therapy. Mommy was also allowed to have therapy but she said no, she had to get me home cos i was hungry and tired. Lizzie did the session, she was a really nice lady. She worked a bit on my blocked tear duct and around my head, she said it felt tight from my mmr jab. It took me a while to settle down (i'm a real wriggler now!), but once i did i really relaxed and enjoyed it.

Monday, August 07, 2006

What would you do?

I really like this story. I don't like being stared at in the street cos of my tube. I want people to see me for me, not for my tube. I quote from a friend mommy has made 'please see me for the baby that i am, not the tube i have strapped to my face'. thank you.

Two Choices

What would you do?....you make the choice. Don't look for a punch line, there isn't one. Read it anyway. My question is: Would you have made the same choice?

At a fundraising dinner for a school that serves learning-disabled children,the father of one of the students delivered a speech that would never be forgotten by all who attended. After extolling the school and its dedicated staff, he offered a question: "When not interfered with by outside influences, everything nature does is done with perfection. Yet my son, Shay, cannot learn things as other children do. He cannot understand things as other children do. Where is the natural order of things in my son?"

The audience was stilled by the query.

The father continued. "I believe,that when a child like Shay, physically and mentally handicapped comes into the world, an opportunity to real ize true human nature presents itself, and it comes in the way other people treat that child."

Then he told the following story:

Shay and his father had walked past a park where some boys Shay knew were playing baseball. Shay asked, "Do you think they'll let me play?" Shay's father knew that most of the boys would not want someone like Shay on their team, but the father also understood that if his son were allowed to play, it would give him a much-needed sense of belonging and some confidence to be accepted by others in spite of his handicaps.

Shay's father approached one of the boys on the field and asked (not expecting much) if Shay could play. The boy looked around for guidance and said, "We're losing by six runs and the game is in the eighth inning. I guess he can be on our team and we'll try to put him in to bat in the ninth inning."

Sh ay struggled over to the team's bench and, with a broad smile, put on a team shirt. His Father watched with a small tear in his eye and warmth in his heart. The boys saw the father's joy at his son being accepted. In the bottom of the eighth inning, Shay's team scored a few runs but was still behind by three. In the top of the ninth inning, Shay put on a glove and played in the right field. Even though no hits came his way, he was obviously ecstatic just to be in the game and on the field, grinning from ear to ear as his father waved to him from the stands. In the bottom of the ninth inning, Shay's team scored again. Now, with two outs and the bases loaded, the potential winning run was on base and Shay was scheduled to be next at bat.

At this juncture, do they let Shay bat and give away their chance to win the game? Surprisingly, Shay was given the bat. Everyone knew that a hit was all but impossible because Shay didn 't even know how to hold the bat properly, much less connect with the ball.

However, as Shay stepped up to the plate, the pitcher, recognizing that the other team was putting winning aside for this moment in Shay's life, moved in a few steps to lob the ball in softly so Shay could at least make contact. The first pitch came and Shay swung clumsily and missed. The pitcher again took a few steps forward to toss the ball softly towards Shay. As the pitch came in, Shay swung at the ball and hit a slow ground ball right back to the pitcher.

The game would now be over. The pitcher picked up the soft grounder and could have easily thrown the ball to the first baseman. Shay would have been out and that would have been the end of the game.

Instead, the pitcher threw the ball right over the first baseman's head, out of reach of all team mates. Everyone from the sta nds and both teams started yelling, "Shay, run to first! Run to first!" Never in his life had Shay ever run that far, but he made it to first base. He scampered down the baseline, wide-eyed and startled.

Everyone yelled, "Run to second, run to second!" Catching his breath, Shay awkwardly ran towards second, gleaming and struggling to make it to the base. By the time Shay rounded towards second base, the right fielder had the ball ... the smallest guy on their team who now had his first chance to be the hero for his team. He could have thrown the ball to the second-baseman for the tag, but he understood the pitcher's intentions so he, too, intentionally threw the ball high and far over the third-baseman's head. Shay ran toward third base deliriously as the runners ahead of him circled the bases toward home.

All were screaming, "Shay, Shay, Shay, all the Way Shay"

Shay reached third base because the opposing shortstop ran to help him by turning him in the directi on of third base, and shouted, "Run to third! Shay, run to third!"

As Shay rounded third, the boys from both teams, and the spectators, were on their feet screaming, "Shay, run home! Run home!" Shay ran to home, stepped on the plate, and was cheered as the hero who hit the grand slam and won the game for his team.

"That day", said the father softly with tears now rolling down his face, "the boys from both teams helped bring a piece of true love and humanity into this world".

Shay didn't make it to another summer. He died that winter, having never forgotten being the hero and making his father so happy, and coming home and seeing his Mother tearfully embrace her little hero of the day!

AND NOW A LITTLE FOOTNOTE TO THIS STORY: We all send thousands of jokes through the e-mail without a second thought, but when it comes to sending messages about life choices, people hesitate. The crude, vulgar, and often obscene pass freely through cyberspace, but public discussion about decency is too often suppressed in our schools and workplaces.

A wise man once said every society is judged by how it treats it's least fortunate amongst them.

May your day, be a Shay Day.

Saturday, August 05, 2006

Hampstead Heath















We went to the heath today for a picnic with Mel, Marianne and sophie. We found a spot under a shady tree, i had a little sleep with daddy then played and had loads of fun. Mommy kept trying to make me stand on the grass, but it was tickling my feet and i kept lifting my legs up, I didn't like the feeling. I love the heath, it's really peaceful.




















Friday, August 04, 2006

Holby City

You're not gonna believe this but my friends Tara and India were on Holby City last night!!! I was so excited when i saw them on the telly, they are true stars! I bet their mommy and daddy are really proud.

Thursday, August 03, 2006

MMR

I had my MMR jab today. It really hurt when they put the needle in, but i was fine as soon as they took it out. I may get a temperature tonight or in 10 days time, doubt i will though cos i was fine when i had my other vaccines, but i guess you never know.

Wednesday, August 02, 2006

My cousins













I got home from physio today to find these gorge malorge pics of my cousins that aunty kir sent. they're so gorgeous just really want to put them on my blog and share, cos i'm one damn proud cousin. the only male cousin i might add... so reckon the girls will be a real 'asset' once i'm older. what you reck?!

















































Tuesday, August 01, 2006

Physio

Had a great physio session today. Tim, my speech & language therapist was also there, he wanted to see how my speech is coming along. Katherine was really impressed with how i'm trying to crawl. I go from laying down on my tummy into the crawling position, so mommy has to encourage me to go from sitting into the crawling position. She was given excercises for that a while ago but it's one she's always struggled with. I used to fight and put my legs straight so made it really hard for her. But now i don't mind it so much so it will definitely be easier. I'm loving standing too, Katherine said mommy must let me stand in my cot and she must show me how to hold onto the bars. I can't wait! Also to encourage me to kneel in front of a little table, that'll really build up my strength for when i want to stand. Wow.. the whole world is going to change for me, can't wait to be able to explore!

Tim asked mommy some questions about my speech. I don't do quite a few things. My speech is delayed cos i don't eat. Eating prepares you for speech, the use of the tongue when you suck etc is good practise for talking. But i don't do that, so talking will be a bit more challenging for me. Tim's going to make mommy a few picture cards of the main sounds. After food therapy she'll show them to me. When mommy and i have conversations she has to encourage more sounds, like 'ba, la, da'. I say them sometimes but not often enough. Mommy and i play peek-a-boo, but instead of saying 'BOO!', mommy says... 'where's luca....' 'there's luca!!!!' Tim told mommy she must say boo, that's a good sound for me to copy. Amazing that silly games like that can have such an impact on your speech, so there is reasoning behind them after all!

Crawling

I've been rocking on all 4's for the past 2 or 3 weeks, well, yesterday when mommy came home from work i showed her and daddy my first attempt at crawling. I managed a small crawl backwards and forwards!! How good is that? I've got physio this afternoon and can't wait to show Katherine what i'm doing. Mommy and Katherine thought i'd be a bum shuffler, that's not a bad thing... but i've proved them wrong. I'm going to crawl and once i start i won't be able to stop. I think mommy and daddy have to make the flat more child friendly cos i'm going to be into everything. I'm so proud of myself i just wanna shout it from the roof tops!