Saturday, March 31, 2007

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!

Friday, March 30, 2007

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.

Wednesday, March 28, 2007

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!

Sunday, March 25, 2007

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.

Monday, March 19, 2007

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.

Sunday, March 18, 2007

How cute am i?

Friday, March 16, 2007

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.

Wednesday, March 14, 2007

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.

Tuesday, March 13, 2007

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.

Monday, March 12, 2007


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?

Sunday, March 11, 2007

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.

Wednesday, March 07, 2007

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!

Tuesday, March 06, 2007

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.

Saturday, March 03, 2007

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. :-)

Friday, March 02, 2007

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.