Waterlow Park

We went to mom's favourite park today. I really like it too, the ducks make me laugh. I did lots of walking and tried playing football with some older kids, but they didn't want me to. Elisa leaves tomorrow. :-(

Look at me walking!

Nursery - day 9

Today was my last day of 'settling in'. It all went really well. I love nursery and really like debbie too. Next week i start officially... will only be going in for an hour on monday cos i'm having an operation. I'm having my testes descended and my tear duct unblocked... they may do my teeth too but doubt they'll have time.

Aunty Elisa arrives tomorrow for the weekend! can't wait to see her, last time i saw her was Christmas.

Nursery - day 8

Had a really brilliant time today. Solomon came. he's a musician and he comes every 2nd thursday. He plays the guitar and we all sing songs. I had such a ball. i ate 2 portions of lunch today, i had lentil bake and mince, it was delicious. I'm really happy at nursery and am making some new friends.

Nursery - day 7

Had loads of lunch today, fed myself most of it. Debbie put me down to sleep, i went down really quickly. there was a fire drill half way through so we all woke up... but then went down again. Mom was around incase i didn't want to sleep, but i slept just fine, in fact, i give mom more of a hard time than Debbie! funny that...

Nursery - day 6

Today i had lunch on my own. We had spaghetti. I fed myself well. Every now and then Debbie would guide my hand to my mouth. Mom came in after lunch then put me to sleep. Everyone else went to sleep quite quickly, i just wanted to play! Mom wouldn't let me though so i got a bit irritated with her, I went down eventually. I slept for an hour and a half and didn't even cry when i woke up (like i do at home!). I think tomorrow Debbie's going to put me down, but mom will be around just incase there are problems. This nursery business is a piece of cake so far, it's fun and the day's go so fast.

Nursery - day 5

Today i had lunch with Zsuska. All went really well, i'm setting in and haven't cried for anyone once. Quite amazing really. :-)

i'm happy here, that's why.

Swimming and hanging out with the guys

Dad took me swimming this morning. He does every saturday but i don't always blog it. We've got a new teacher and she's great, we have a lot of fun. We even jump off the platform into the water, or in my case... dad's arms. After swimming dad and i took a walk to my nursery school. Every saturday they have a meeting for dads and their kids. A free breakfast is laid on, dad and i both had some scrambled egg and toast. Dad had a chat to the head of my centre. He said i'm doing really well, mom and dad just have to decide what support i need. Cos i'm a special boy, i get to have 2 hours of extra support a day. Mom's going to speak to the SENCO and get the paperwork started. Next week is a big week for me. I'm going to be having lunch and sleeps at nursery.

Nursery - day 4

Mom dropped me at 10 and came back at 11.45am in time for lunch. It was my first lunch there. I sat at a small table with Otis (he's my new mate) and Freddie. We had fish fingers, chips, salad and beans. I ate SO well. i watched everyone finger feeding and fed myself quite a lot. I'm really good at taking the spoon to my mouth but have always needed help scooping, well today i scooped for the first time.. all on my own!!! Debbie was really impressed with my feeding skills, don't think she expected me to eat so well on my own. Not bad eh, considering i only started eating orally in October.

Here's a pic of me and Debbie, she's my key worker. I really like her, she gives great cuddles!

Curly locks

Nursery - day 3

Mom took me in today. She left me there at 10am and only came back for me at 11.30am. I was totally fine. I played in the heuristic room for a bit. It's a room where there are no toys, but objects made of natural materials. Things like corks, tin cans, natural string etc etc. Every day things ... things we find more interesting at this age, things you wouldn't be able to find in a toy catalogue. I met Otis in there, he was really nice and gave me a plastic lid. I played really nicely with everyone, mom came and collected me while we were having a sing-song. They are amazed with how well i'm settling in... i'm friendly and sociable and love interacting so it's no suprise really. I'm also walking more than crawling now!!!! Going to post a movie of me walking soon so watch this space. Tomorrow i'm having lunch at nursery. Hope the cooking's as nice as mom's :-) !

Nursery - day 2

Zsuska took me again today, only this time she left me alone for 5 mins, then 10, the 25 mins. I coped really well... i'm really sociable so didn't mind being left at all.

Nursery - day 1

mom's sick at home. nice to have her home all the same, don't usually see her in the morning's except for weekends. Zsuska took me to nursery, only for an hour. The staff didn't want to get involved too much, it was more about showing me around my new space and letting me explore. we did some painting... i love the feel of paint. i threw the sponge at the wall afterwards, just to make my mark. I'm back tomorrow for 1.5 hours then mom is with me thursday and friday. I'l sleep on those days and have lunch too, will be weird not being home but sure i'll cope.

happy birthday!

happy birthday grandpa gunter! you would've been 69 today. mom and dad toasted you tonight. i couldn't cos i'm too young. wish i could post a pic of you, but digital cameras didn't exist when you were alive. maybe i can scan one in one day.

till we meet... x

PALS

Had another PALS session today. Wasn't meant to have any more... but i only start nursery next week so i went along. It was good, Zsuska (my new nanny) and i had a ball. I think i'll be fine in nursery, i love other kids so much, i scream with excitement when i see them. Mom's gonna miss me though... think the whole thing is worse for her than it is for me.

Shakin' Stevens

Loving ice-cream... hate sand and swings!

We all went to the park today. Dad put me in the sandpit, i didn't like the feeling of sand on my feet, so i got down and tried to crawl in it... but didn't want to touch it so got quite good at crawling without using my hands(?). I was the same about grass, but now i like grass.. so i'll get used to sand i guess... maybe when we next go to the beach for a holiday? Mom also pushed me on the swing for a bit. it made me feel sick, didn't really fancy it... mom felt sea-sick pushing me so maybe it runs in the famdamily.

BUT i love icecream! i'm not really meant to have sugar cos of my teeth but i just had little bits off mom and dad. Mom had a vanilla cone and dad had chocolate and marscapone. yum!!! it was delish and such a treat in this hot weather.

uhm... what should i have for breakfast?

... BUTTER!!

Fridges

I LOVE the fridge. It's quite hard to open but it's worth it. I love taking everything out and putting it on the kitchen counter, then i put everything back in. I think it would be brilliant if i had an old fridge as a toy box.

My nursery school

I went with mom to nursery today to meet the SENCO (special needs co-ordinator). She showed us around and i stayed in the room for a while and played. The room i'll be in is great, it opens out to a garden which has a trampoline, sand pit and water play. There's going to be so much to do and i'm going to make new friends. I'm really excited! I've got my settling in period soon, don't think it'll take me long to settle but you can never be certain.

PALS

Had my first PALS session today (play and learning support). I hardly saw mom, i was too busy playing with everyone else. I especially loved the tent. I didn't want to come out, i was giggling like mad, especially when someone joined me inside. We sang songs at the end, i was watching everyone do the actions, i don't know how to do them yet.

I won't be going to any more sessions because i start nursery school soon.

mmm PAINT!

Sunny day = hampstead heath

I had an absolute ball today. We went to the heath for a picnic. I ate bread, mozarella, tomatoes and even tried a bit of cake. I played with Sophie all afternoon. She's really good fun and was making me laugh a lot. I spent a while leafing through her book that had really amazing pictures that she'd drawn. She was really kind to me. I think i even caught a little bit of a tan ;-)

I also loved walking on the grass, it tickled my feet and made me giggle.

Look who's back!

I saw Tara and India today for the first time in months. They're lucky bunnies and have been live in Goa for the last 4 months. I shared my toys and we all played together. They're both walking now and have ringlets like me, only mine aren't called 'ringlets' cos i'm a boy, mine are called 'curls'. It's great to have you back girls, can't wait to see you again soon.

Passed my hearing test....

... with flying colours! It was quite an intense test. i didn't really like it. The first half was ok cos it was fun. we sat in a room and the nice lady sat opposite me with puppets and things. i'd hear a sound and every time it played a puppet would light up in a windowo on my right. The lady opposite me would distract me again... I learnt to associate the sound with a reward. So every time i heard the sound, i knew to look for the puppet in the window. If i didn't look for it, it meant i didn't hear the sound. I was really good. The sound was played at different pitches, found them all fine but the really quiet one was quite tough. I did get about 3 in a row which i think puts me in the 'normal' range of hearing.

Then i had to have an ear plug type of thing playing these clicking noises. it was measuring my inner ear and how it responds to sound by vibrating. all went well and i passed the test! mom was sure my hearing was fine, it's just good to rule it out and to know all's well.

Nonna and Nonno have gone home

They left today. I'm sad because they looked after me really nicely and i had lots of fun. The new nanny starts tomorrow until i begin my nursery. I hope she's nice. I've met her a few times but not for too long. I'm sure it'll be fine, i like most people.

Look at me standing!

Some pics of our garden

Here are some pics of our garden. Nonno and dad have worked flat out cleaning it up this weekend. Thanks for all your help Nonno! I'm really excited... I'm going to be getting my very own sandpit :-))

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.