The heath with matt

We went for a picnic today. it was brilliant, i played football for the first time, leigh-anne showed me how. Matt was really kind and didn't mind playing with me, even though i'm much younger than him.

I start nusery on the 8th May

I'm really excited.. i'm going to be starting nursery school on the 8th May. I'm going to make some new friends and have an absolute ball. I'm sure i'll learn lots of new skills there. Mom's found a really nice nanny to take care of me until then, she starts next week.

Getting braver!

I'm getting more and more brave. i'm starting to stand all my own without holding onto anything. I have quite good balance and don't really realise i'm doing it. I think if i did think about it too much I'd fall!

Nonna and Nonno come to look after me

Nonna and nonno have come all the way from italy to look after me while mom and dad find someone to take care of me while they're at work.

Last time i saw them i was really ill, so they never really saw me eat or anything. Nonno took me to a one o'clock club so i could play with some children, very brave of him to do that... he doesn't speak any english!

Took a right turn

I slept really well last night. Thought I'd go looking for mom and dad this morning. This time i knew where to go and woke them up with a huge smile. Think i may do that more often now... cos i get to lay in their bed for a bit before breakfast. It's a great way to start the day.

Something's up

Mom hasn't been at work. she was ill yesterday but today she's not that bad and she's at home looking after me instead of manny. I think something's happened, mom's looking for another carer for me. I wish mom could take care of me all the time... we've just bought a new house though so she needs to work, some of the time anyway.

watch this space. hope they find someone nice!

Took my first steps!!!!!!!!!!!!!!!!!!!

I was doing the usual cruising around, there was a box (we've just moved.. remember) that i really wanted to get to, but it was just that much out of reach. I did it, i took 2 steps without holding on, how brilliant is that? I didn't really think about it, it just came naturally. Not long now before i'm running.

my first comforter

I have shunned all soft toys, blankets... and chosen mom's notepad. She used it to record the amounts of milk i used to get down the ng tube, calories etc. I love it.. i take it everywhere. it's slowly disintegrating though but i'm not too worried, there's a plastic box i really like as well so i do have a back up.

How cute am i?

Been accepted into new CDT

I went for an assessment today at the islington cdt. They will be accepting me. It's still early days and they want to keep an eye on me, if i continue to do well/improve they'll discharge me later on. It's good therapy for me so i'm pleased, i'm only 18 months old so i want to know that i'm getting all the help i can to prepare me for later on in life.

The price of freedom

You know my cot's been converted into a bed.. well, i didn't want to sleep alone so thought i'd crawl to mom and dad's bed. i took a wrong turn though and ended up down the passage way. It was quite tough crawling in my sleeping bag so i just sat down, put my head on the floor between my ankles and feel asleep right there. Mom found me in the morning, didn't know where i was when she picked me up.. very confusing.

3 procedures... one general anaesthetic

.. i hope! I'm due to have my testes descended in May, today i went to have my blocked tear duct checked out, they're going to try do it at the same time. I hope my tear duct is just blocked and there's nothing wrong with the anatomy. If there is... then i'll have to have surgery. I'm also having a protective coating put on my teeth, they're starting to hurt me now and i'm not enjoying having my teeth brushed. Not sure they'll do the teeth with the testes and duct, i hope so though.

46,XY,del(10)(q23.2q24.1)

I have a chromosome buddy! His name's Benjamin and he lives in the US. We share the same code but that doesn't mean we share the same symptoms. Chromosomes are so complex and genes tend to overlap, so Benjamin and i will experience different things.. although we are the same, we are unique.

Hallo Benjamin!... maybe some day we'll come to the US for a holiday.. wouldn't it be cool if we met up?

We've moved!!

Yep.. we moved yesterday, I had a ball playing games while everyone was packing. As soon as something went into a box i reached in and took it out again (hehe). I LOVE my new home. There's loads more living space and i love my new room. I don't have sides on my cot anymore, it's been converted into a little bed. I far prefer it, don't feel so caged in and it's nice knowing i can just climb out if i want to. I'm sleeping well though, my walls are a bluey colour and i love it, it relaxes me.

Words of wisdom

'I don't know if you want me to hand over Luca as he is doing so well and i'm not sure if you will need our help much more.'

That's what my dietician says. Imagine that... one less person to see!

Jenny visits

Jenny came to visit, she's great fun.. i love the way she plays with me. In fact i had such a great time with her i didn't want her to leave, i kept asking for more cuddles as she was leaving. She's gone to prague to work.

Multidisciplinary Review Report

It came in the post this morning. I'm doing just fine.

0 = no problems
1 = Mild
2 = Moderate
3 = Severe
4 = Profound

Intellectual Learning = 2
Gross Motor = 1
Fine Motor = 1
Vision = 0
Hearing = 0
Speech/Language/Communication = 1
Behaviour Problems = 0
Self Help = 0
Physical Health FNA Score = 0
Eating, Drinking and Swallowing = 1

Not bad scores hey. :-)

Oh Oh

When mommy says 'oh oh' i copy her. I make my lips into a circle, just like she does. Other sounds are a bit harder, but i'm definitely becoming more vocal. I can chat to myself for hours on end. I'm having a hearing test soon, i'll be surprised if there's anything wrong.

Fed myself today!

I go to makaton play sessions every Friday. We sing songs and do different activities. At the end of the session we all share a snack together. Today Stuart gave me a wafer biscuit. I looked at the other kids in the class eating theirs, it looked really easy so i gave it a bash. I ate the whole thing, all by myself. Stuart couldn't believe his eyes. I'm not really meant to have sugar though so don't think i'll be eating many wafer biscuits in the future. Mommy gave me a banana to munch on when she got home. I ate a bit of it but it felt really soft so i just squished up the rest. Feeding yourself is good fun, i recommend it.

Helen gives me new goals

Helen from KIDS came this afternoon. She's set me new goals. I've already achieved one of them... i can now put the objects on the stacking ring. I've been taking them off for a while, but now I'm putting them on too.

Genius or flook?

When mommy got home from work i heard stuart telling her that i know my colours. i'm a baby still so mom was quite shocked and thought stuart was talking b)(*^& cks! she tested me though, she held different coloured objects in front of me, saying their colour first... then she told me to pick the colour she said. well i did it.. every time?! am i genius or is it flook? not sure that's how you spell 'flook' but nevermind.

Like my picture?

This is the first picture I've ever drawn in my life. I picked the colour and everything. I think it's magic how the colour comes out the other end of the pen, just like that. Mommy's going to keep it forever.

Should boys wear tights?

I wear them if we're going out and it's cold outside. I thought tights were just for girls... but i do like them, they keep me warm and the cold air can't creep up my jeans and make my legs cold.

The first of many?

I had a little bump yesterday. I cried cos it was sore. Mommy picked me up to give me a cuddle and saw that i dribbled a bit of blood on her shirt. Because i've had heart surgery there's a risk i can get Endocarditis from a cut in my mouth. Endocarditis attacks the heart valves. The risk isn't high, it's just higher for heart children. I had to go to hospital and have antibiotics. They gave me one shot through a cannula, then i had the second shot orally at home. I also have to have antibiotics before i go to the dentist. There's lots of bacteria in the mouth.

Mommy wants to try and get some in powder form to keep at home. I'm a boy so sure there'll be other times when i bite my lip or whatever from falling. Especially now that i'm learning to walk.

Welcome to the world Elliot

This is Elliot. I met him today for the first time. He's only a month old. Isn't he beautiful? He's too young to play with right now, but soon enough I'll be able to.

So not a morning person

Don't underestimate me

Feeding is easy. I sit back and mommy or daddy feed me. I don't have to work for it, all i have to worry about is chewing and swallowing. Well, last night i picked up a pasta piece and took it to my mouth, i licked it, then put it back down. Mommy nearly fell off her chair? Ok, admittedly she'd never seen me do that before... but it was easy, nothing to write home about. Mommy asked if she could have some, i didn't mind sharing my dinner so i fed her about 6 pastas. I also picked up my bottle and took that to my mouth for the first time. That was also easy, i didn't get any milk out cos apparently i have to tilt the bottle, bit of an inconvenience really. Don't underestimate me mom, i can do more than you think!

Developmental Assessment

I had my developmental assessment. Apparently i'm a 12 month old developmentally, but i'm 18 months now. The first 6/7 months of my life were spent on a couch, i barely moved and i didn't eat. My progress has been very rapid, but i've still not caught up. Mommy and daddy think i'm doing great... i can only do my best, and only do what i can do. Things are a bit harder for me, all these things i have to learn how to do... it can get quite overwhelming. I like to do it in my time, at my pace and my way.

White stuff

I woke up this morning and mommy took me outside. Everything was white! I smiled and laughed when i saw it cos it was the last thing i expected to see. It's called snow.
I like snow. One day i'm going to build a mini me out of it.

I'm a big boy now

.. i get to sit in a forward facing car seat. How cool is that?

we went to great ormond street to have my teeth checked out. i am losing enamel but not serious yet, they can fix them laters.

Cicilia and Tobia

Cicilia and Tobia visited from italy. Cicilia's a bit older than me, tobia is a newborn, he's a tiny baby. I can't believe i used to be that small. We went out for lunch, it was great, i got to sit next to Cicilia and we had crayons and paper to draw with. Of course, i preferred tearing the paper up, throwing the napkins, knives and forks on the floor. Mommy spent more time under the table picking stuff up than sitting eating at it. Oh how i love to watch mommy pick things up after me. It's a great game!

Look.. I'm a star

http://www.kinderpsychosomatik.at/home/

watch the movie.

Loo roll

Hey guys, it's really cool.. when you pull on the end of a loo roll all the paper comes off it... it just piles higher and higher, to almost your height... then all you're left with is a cardboard tube. Now that's really good fun too, you can look through it, play ball with it or even tear it up!

I've reached my goals!

Helen came from KIDS, i've now reached all my goals and time to set new ones. I'm doing great! Developmentally i'm not far behind at all, more so in self help cos i'm not feeding myself yet.. i've only been eating 3 months so that'll come.

Here are my old goals:
Social skills
i have to learn to let go of a toy when i'm asked to (DONE!)
I'll roll a car or a toy to another person, take part in a game (DONE!)

Cognitive and play skills
I have to learn to put objects into containers. (EASY PEASY)
I must find an object hidden under a container. (DONE THAT!)
I must transfer an object to another hand so that i can pick up another object. (NO PROBLEM THERE!)
I must press a button/switch to operate a toy. (YES!)
I must take the stacking rings off the pole (DO THAT WITH EASE)

Motor skills - i must use my pincer grip to pick up small objects (I'M A PRO)
I must stir dry pasta/beans with a spoon or shovel. (YEP!)

I must look at a familiar object when named or signed e.g. mommy. (YEP)

What can i say?

Liver

I had liver for the first time tonight. The nice man at the butchers gave it to mommy for free, it was just a small piece. I really liked it... it would be rude not to eat it when someone was so generous. I've started drinking again. I don't drink a lot, i prefer getting my fluid from food. i'm eating extremely well and putting on lots of weight. It's been 3 months since i lost my tube. I went from someone who used to block spoons from coming anywhere near my mouth, to someone who shouts for food! I've gone from someone who used to gag and have no confidence to eat, to someone who eats breakfast, meat, fish, chicken, all vegetables, all fruits, bread. In fact, so far there's nothing i don't eat and nothing i don't like. I've achieved all that in 3 months. It's been the best 3 months of my life.

Last physio session with Katherine

I had my last physio session with Katherine today... ever. We're moving house soon so will have a new physio, hope the new one is nice to me. I'm seeing Katherine again when i next have my developmental assessment next week. She's really pleased with how i've come on, i just have to build up my confidence a bit and get walking! I'm in no rush, i'm getting around just fine by crawling at the moment and cruising's safe... i get to hold on to things. imagine not holding onto something when i'm walking.. er.. no thanks!

Hannah & Erin's first day at school

Look at these pics of my cousins on their first day of school. Hannah started big school, she's got a uniform and everything. Erin's started pre-school. Don't they look smart?

Weetabix

I should be the star in those weetabix adverts. every day i have weetabix for breakfast (they're very good for you, you know), and just like the adverts i have new toppings. One day it could be just milk, the next day it could be fruit pot, the next day it could be chopped banana.. think i'm going to try blueberries next. I even eat 2 weetabix some days, not bad eh.

The cot is finally working out really well. I'm a bit upset when mom puts me down initially... but when it's all dark i know that it's time to go to bed. I sleep right through the night. If i wake in the night now i know to put myself back to sleep again. But in the morning's i shout, i want my breakfast and am ready to start the new day.

Cot vs. double bed

Mommy and daddy put me back in my cot over the weekend. I didn't really understand why they were doing it at first, i really liked sleeping with them and plus i could pull mommy's hair and hit daddy on the face when i wanted them to wake up and play.. it was brilliant! but after spending some time in my cot i'm sleeping really well and mommy and daddy are too, so i guess it's a good thing really.

Louise rocks!

This is Louise. She works with mommy. I met her for the first time today. We had loads of fun, she played really nicely with me and gave me lots of love!

The Hoff

Mommy said i look like the hoff in this picture, what do you think?

We've exchanged!

We are now official owners of our first home. It's taken forever to come through, but that's ok, we weren't really in a rush to move. Completion date is 5th Feb, we move out end of Feb. Have to do a bit of work on the house beforehand.

It's a small flat but more room for me to run around, a new space to explore. i can't wait!!!

Thank you!

This poem was left as a comment, but i thought it too special not to have it out, for all to see! It's from my friends who are in India at the moment, i miss them very much.


From Lizzy & Justin
Here’s a poem, If (with words adapted from the Rudyard Kipling poem of the same name) from us all in Goa... Big kisses Luca, congrats from us all for doing so brilliantly in the last 6 months, and see you all in the spring! xxx

If
If you can keep your head when medics around you
Are losing theirs and making you feed by tube;
If you can trust yourself when doctors doubt you,
But make allowance for their doubting too:
If you can wait for ops and not be tired by waiting,
Or, being anaesthetized, never make cries,
Or, at the dentist's, don't give way to hating,
And yet don't seem too good, nor act too wise.
If you can eat---and not make food your master;
If you can drink---and not make drink your aim,
If you can meet with injections and then plasters
And keep the nurses smiling just the same.
If you can inspire the blog your Mum created
And look soooooooo cute in every fresh photo
And have your progress joyfully recounted
And so keep other parents in the know.
If you can make one heap of all your nappies
And risk it on one day of ‘nappy free’
And leak, and start again with fresh beginnings,
And never breathe a word about that pee!
If you can force your heart and nerve and sinew
To ‘cruise’ the chairs long after bedtime’s gone,
And so hold on when there is nothing in you
Except the Will which says to you: "Hold on!"
If you can meet with Profs and keep your virtue,
Or visit Rome ---nor lose the common touch,
If neither scans nor heart surgery can hurt you,
If all men drink with you, but none too much(!)
If you can fill your parents’ every minute
With sixty seconds' worth of love and fun,
Yours is the Earth and everything that's in it,
And---which is more---you'll be a Man, my son!

I'm a star... what am i?

I had my care plan meeting at the child development team today. We meet up every 6 months to discuss plans for the future, and to discuss how far i've come since the last one. Eating was the biggest thing, along with my mobility. In fact, i'm doing so well they were going to release me from there cos i don't need as many therapies anymore. My care will be moved to islington cdt now, but if i'd stayed where i am now... they would have let me go this year. My paediatrician also told us that she spoke to the geneticist at great ormond street about me, they're going to work as a team and document my chromosome abnormality, along with my progress in the medical journal. They want to give others hope. My abnormality is extremely rare, there aren't any documented cases, the only similar ones the geneticists could find stated 'mental retardation'. So, what better than documenting it all and giving others hope. My paediatrician said that she never for one minute expected me to turn out as i have. That's how well i've done and i'm a star. Mommy and daddy are very, very proud of me. They'd love me, no matter what... but i'm a little soldier and deserve a pat on the back.

It's a family affair

We're all sick, we've got colds. Mommy, daddy and i. it's a family affair, just like brushing our teeth. I won't brush mine unless they brush theirs with me. I've started drinking again, i need the fluids so i'm wanting them.. not eating much though.

Physio & Speech

Had my first physio and speech session today, it's been a while, what with christmas and all. I'm getting a cold so wasn't up to much. Didn't really want to play. Katherine's happy with how i'm moving, mommy and daddy have to make cruising more difficult for me, by putting pillows in the way and stuff like that. My speech is pretty delayed. I'm still not saying any words. I will do sometime i'm sure, all kids develop at different rates and i've been through a lot so it's bound to impact stuff. Mommy's gonna get my ears tested. She doesn't think there's a problem but just wants to rule it out. i respond to sound, i turn to noises, like the phone ringing and doors closing, and i understand what she's saying when she says things to me.. like when she asks me for a cuddle i know to give her one.. daddy too! When she calls me to come to her, i come. Sometimes when she calls me i don't respond, but that's cos i'm playing and don't want to be disturbed.

Thank you Aunty Kir

I'm wearing one of the 2 scarfs aunty Kir knitted me for Christmas. I love it. It really makes me feel snug as a bug. Clever Aunty Kir!

KIDS

Helen from KIDS came to see me today. She bought some new toys... a funny alien thing that lights up when you hit a button. I'm quite good at hitting the buttons on my phone with my thumb, but she wants me to hit them with my index finger. She also bought a bat that's holding an eyeball (?), when you pull the eyeball and put the bat on the floor, it reals the eyeball back in. Haven't quite mastered that one yet. I wasn't really interested in playing with toys today. i'm more intreseted in cruising furniture and exploring the flat. I've found the vegetable basket and love touching everything in there... onions, garlic, potatoes.

Swimming

Today was the first swim i've had this year, actually haven't swam for ages cos of the christmas break. I have a new teacher and there are new kids. they're bigger than me. I didn't really enjoy swimming today, i had more fun with daddy at the end of the session, we played in the warm pool for 20mins.

Lordy, lordy, lordy

I had my first dentist appointment today. Mommy's been worried about my teeth. When i was in hospital with pneumonia she noticed that they were looking 'stained'. I've been on iron supplements which can stain teeth so she took me to the dentist to make sure all was ok. They said i could be losing enamel. Agh. It could be related to my chromosome. I have to go to Great Ormond Street for a check up. I wouldn't let the dentist have a good look, it's a bit invasive isn't it? I hope i'm not losing enamel, but if i am and my teeth look funny, please don't tease me about it.. or you'll have my mom to deal with.

On a lighter note, i love to eat! i'm not drinking at all.. i must be getting enough fluid from my food. I've tried chicken, fish, fillet, most fruits and veg and i love it all. I love cheese too! i'm eating really well. If there are problems with my teeth i guess we'll have to stay away from sugar. so don't go offering me sweeties and tempting me.

Buon Anno!

It's 2007, can you believe it? We went to mel and stu's. They had a party and everyone had to wear something sparkly. i had good fun crawling around, mel also gave me a belated christmas present. thank you mel! A lot of people hadn't seen me for a while and couldn't believe the change in me. What can i say? Mommy, daddy and i left early though, we were home by 10pm. We stayed up until 1am. Mommy tried to get me to sleep but i'd had a late afternoon sleep and i wasn't tired. anyway, it was new year so why should i go to bed earlier than them?!