Went to Great Ormond Street for opthalmology appointment. my tear duct was blocked, when i had a general anaesthetic they couldn't unblock it themselves... today i was going to be referred to another department for more surgery. BUT GUESS WHAT?? it's fixed itself! yay! i've been discharged... :-)
I'm off to langebaan tomorrow for 3 weeks. I'm going to be hanging out with all my cousins on the beach. Can't wait! Will blog when i'm back.
Buon Natale!
I've never met you, you live all the way in New Zealand. I received a parcel from you today. What a great t-shirt! I know mum's really gonna enjoy the mud pack too. The beautiful angel has pride of place in our entrance, watching over us when we leave the home and welcoming us when we return.
Charlie you have done so well. Mum tells me your mic-key has been taken out? wow!!! i know you went to Austria, like me. Isn't that place amazing??? i really hope we meet some day. Here's to eating food, enjoying the new flavours and textures. Onwards and upwards Charlie!!! Big hug! x Thanks so much for the presents. Tell your mum to send some pics of you tucking into food!
We're going to south africa for christmas so i got one of my presents early.. who's complaining? I've still got all of santa's presents to look forward to anyway...
I've got a hobby horse. I love it, beats walking around with mom's rain stick between my legs, or the broom. I've also got a motorbike! it's red and looks rather snazzy. I can push myself backwards but haven't worked out how to push myself forwards. I just shout 'oi' and mom or dad will push me at great speed down the passage. it's great fun.
Mom was washing the dishes and i sneaked into the kitchen and took the milk out the fridge, unscrewed the lid and poured the entire contents on the floor. It was great fun, sploshed around in it, drew in it... then mom had to come and ruin my fun by cleaning it all up.. :-(
My understanding is incredible. I understand everything mom says. I've been a bit of a snot bucket lately, mom told me to go and get some toilet paper to wipe my nose, which is what i did. I couldn't decide how much i needed though... i figured a lot of snot = a lot of loo paper!
My speech is coming along too. I now say 'up' everytime i want to be lifted up, which is often! I can point at photos and say 'mama' and 'dada', i say 'hallo' to everyone i see, also wave and say 'bye'. I say 'nanana' for banana. When i do things that are naughty and mom catches me i say 'oh no'! I say 'yeah' and 'no' with meaning too.
I love talking on the phone 'chatter, chatter, chatter... hahahahahah, chatter, chatter, chatter.. hahahahaha!'
I've been sick for over a week now. Mom was ill first and she gave it to me, thanks Mom! I haven't been to nursery school for over a week.. hope to go tomorrow. I'm getting cabin fever.
It was wonderful to see her again. She loves me a lot and i love her too. I was still quite sick though but i had my moments of feeling ok. She's given me a christmas present, can't wait to see what it is.. mom said i have to wait until christams day. boo!
Mom organised a parents day today. 18 families came to meet the professor. Their children were all tube fed. Unfortunately I got there late because i was at nursery so didn't get a chance to meet everyone. It was a good day though and i think there'll be another one in March. All the families came because they're struggling to wean their children off the tube or they wanted some advice. Everyone left with a smile on their face and with hope and good advice, what more could you ask?
Here's a picture of the professor on the left, and the lovely Jean from the Palace who let mom have the whole place for free. Thank you Jean!
I saw the professor today, she's the one who helped me eat orally. I also saw all my old therapists and paediatricians, right from birth up until now. They all said i was looking really well (which i am). I spent most of the time out of the lecture theatre, it was really quiet in there and i was talking all the time so dad had to take me out.
Someone told my story, about how i was tube fed and then went to Austria and started eating orally. Then the professor talked, she didn't have much time but what she said made an impact.. the top surgeon at Great Ormond Street Hospital is going to do a trial, he's going to send 3 children from here to Graz, Austria to be weaned. If it's successful (which it will be), they will hopefully work in collaboration with the professor. Wouldn't that be good?!
I'm sitting at nursery minding my own business, drinking some milk through a straw.. from those little cartons we get... mom comes to collect me and starts jumping up and down with excitement. what's all the fuss about? i've been drinking through a straw for a while now but mom didn't know.. geees. the funny thing is i drink more now... wonder why that is? mom's now on a straw mission to find healthy drinks for me to enjoy. she's had some great suggestions from her friends at heartline.. can't wait to try them out.
I still haven't met you, mommy hasn't either.. isn't that terrible? You're 1 today and are probably bigger than me already! Can't wait to give you a cuddle at christmas time. See you soon Kai!
I don't like singing in a group, I cry when i sit with everyone and they all sing. Why? I don't mind singing or loud sounds at home, the only time i've cried is when dad shouts when inter milan score a goal, really gives me a fright. I didn't cry when mom shouted when south africa scored in rugby, maybe i don't like football?! It's a bit of a mystery really. I'm definitely not sensitive to other loud noises... like the blender, vacuum cleaner etc. Any suggestions?
I've also started hitting out at others at nursery. I'm feeling frustrated because i can't communicate. People are drawn to me at nursery and hug me all the time, it's fine for 1 minute, but if it drags on a bit i don't like it and want them to stop. The only way i know how to stop them is by pushing them away. I hit mom sometimes when i don't want to do anything and she makes me do it... like going home from nursery when i'm happily playing with others. I soon hug her to say sorry though, i know what i'm doing is wrong, but i'm frustrated and don't know how to deal with it. Think mom needs to brush up on her makaton so she can teach me more signs.
Can't believe you're 4 today. Last time i saw you i was tube fed. it really upset you every time i pulled it out, you were very sensitive with me and loved having me sit on your lap.. well, I'm coming to see you at Christmas and you'll see that i'm eating with a spoon now, no more tube! you may not want me on your lap this time though, i'm quite heavy now.
Hope you had a great party, sorry your present is late.
My occupational therapist has given me a really nifty table and chair that will grow with me, this is to help with my attention span. It's working, that's for sure. It's much easier building towers out of bricks or trying my puzzles while i'm sitting at it, rather than on my play mat. I don't have occupational therapy.. or any therapy for that matter, but the activites i do at my table will help my speech too. My speech will improve as my attention span improves... so watch this space :-)
.. at nursery. I'm not needing 1-1 support at all. I'm accessing all the activities just fine, i'm confident and loved by all in the big room. I used to be a bit unstable on my feet... i still am a bit, but i'm getting stronger. I've got a massive interest in books, nursery give us a new book every friday to read the following week then we have to return them. I've already got lots of books at home but always nice to hear a new story, love the pictures the most.
SOUTH AFRICA OF COURSE!!! Uncle Glenn sent me the kit. don't i look fine?
.. i've moved into the nursery room. I've left the babies room now cos i'm a big boy! There's a lot more space in my new room, plus i get loads of cuddles from all the older girls. It's brilliant fun, the garden's also bigger and i get to climb things (much to mum's dismay!).
mom says that to me sometimes, when i play with the toilet brush... pour my milk all over the floor, wash my hands in the toilet.. she says 'no, no, no!'. i think it's really funny, i say 'no! no! no!' back to her and carry on doing what i was doing. it's a great game!
Cicilia and Tobia came to see me, all the way from italy. We had lots of fun playing with my toys, Cicilia is just a little bit older than me. I think her and Tobia look like twins. If Tobia wasn't so small i don't think i could have told them apart.
Nursery had a family day today. It was brilliant fun, i danced with a tiger and a bear and they both knew my name! I also got to see a fire engine and a real police car. There were lots of children to run around with and lots of things to climb.
... clap your hands! (i do that)
... touch your nose! (i do that too)
... touch your head! (yep..do this one too)
... touch your ear! (.. know where my ear is)
... give me a kiss! (that's the best part!)
aren't i a clever bunny?
Lena from my nursery suggested this for mom, it's a really good idea.. makes touching my body parts that little bit more fun and interesting!
Every second thursday Solomon comes to nursery to play music and sing. Every time i see him i burst into tears... what is it about him that makes me cry? no-one else makes me cry like that? But as soon as solomon starts playing his music and i dance... i relax and have a great time. i like solomon in the end, but seem to forget by the time he comes and visits again!
When mom fetched me from nursery today i was ready to come home. Lena told mom that i have the most amazing nature... whenever a younger child comes into the room i'm the first to go to them and give them a big cuddle hallo. They think i'm doing really well too, with my speech, my understanding.. everything. I'm copying a few things at the moment... i love to copy gestures and i can say a few words now. It's always good to hear positive things about yourself.
When mom came to fetch me i was standing at the fence of the baby room hanging to go into the big garden. Debbie came and let me in... was really annoying, just as i got in there mom arrived to collect me. I ran off before she could hug me hallo. I had a little run around but still didn't want to go, i wanted to stay with Debbie!!! I'm becoming more and more independent and turning into a little boy... nursery has played a big part in that, i love it there so much... it's like my 2nd home ;-)
I'm leaving the baby room and moving to toddlers. Doing it really slowly though.. i love it over there, there's more space to run around and of course more children to play with! I may need some support while i'm there but we'll see, once i'm settled in we'll know more. i'm very happy that my key worker, debbie, is moving with me. :-)
i had spaghetti for dinner last night... this morning mom pulled a piece of it out of my nostril. it was there all night.
I have ANOTHER cousin!! her name's gemima lily and she's really beautiful, just like all my cousins. I can't wait to meet her at christmas time.
After Venice we went to Milan to see nonna, nonno and elisa. Last time they saw me i wasn't even walking... so you can imagine! I miss them already but am hoping to see them again soon. We were so spoilt, nonna cooked us the tastiest food and even made some homemade gnocchi... yum!! Saw Lorenzo by the fountains... we played for a bit, he's a monkey, like me!
We went to Venice last week. What a ball i had! I loved chasing the pigeons, they're all over venice and are very tame. I chatted to a lot of people there, the italians love children. I loved the bridges and wanted to walk up and down them all the time. Best thing was having mom and dad all to myself. 
