Wednesday, January 31, 2007


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.

Tuesday, January 30, 2007

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!

Sunday, January 28, 2007

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?

Saturday, January 27, 2007


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.

Monday, January 22, 2007

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.

Saturday, January 20, 2007

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!!!

Friday, January 19, 2007

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 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!

Wednesday, January 17, 2007

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.

Tuesday, January 16, 2007

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.

Friday, January 12, 2007

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.

Thursday, January 11, 2007

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!

Tuesday, January 09, 2007


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.

Saturday, January 06, 2007


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.

Wednesday, January 03, 2007

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.

Monday, January 01, 2007

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?!