About Me

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My name is Isabella grace i am Six years old and i have a rare chromosone disorder, it doesnt have a name so not much is known about it.I have two holes in my heart , epilepsy which i struggle with especially in the winter. I am also registered blind and am unable to feed so i am fed by a machine. Despite all this i am a very happy little girl and have started smiling and giggling although people are still trying to figure out what makes me laugh. I am very delayed but i can hold my head now and roll onto my side in the last couple of weeks i have started sitting for over an hour on my own which is amazing although mummy still finds it hard as i normally have to be carried every were and i am getting very heavy but i like being carried as its extra cuddles.xx My family are amazing are are all working hard at the minute to raise £30,000 so that i can go to America for intensive and specialist physiotherapy and speech and language therapy. The hope is that one day i will take my first step or eat my first chocolate button. DONATIONS CAN BE MADE USING THE PAYPAL BUTTON OR BY SENDING IT TO DC 3017 CHRISTINE BENNETT CAIT BRENTWOOD POLICE STATION or e mail us for further info

Thursday 15 April 2010

A further update

Hi everybody,
well i had lots of fun at the baseball match my favourite part was before the match when there was all the loud msic and cheer leaders i really liked that bit and was smiling lots, so much so that some people near us where laughing at me i think it was just because i am very cute. Mummy and tony where laughing about it the next day because i fell asleep during the match and wouldnt wake up so i missed all the fireworks and everything. Mummy said that the match was very exciting because the florida Marlins where loosing but right at the end they won so everyone was going mad and getting really excited but i slept through it. Mummy felt better when we got there as there was lots of children there including tiny babies it was very family friendly and everyone was very nice and helpful. on the sunday the weather waasnt very nice and was raining so we couldnt really go out so i just went to the indoor mall and then to the rainforest cafe. It was lots of fun and i enjoyed trying on all the different hats in the shop. We didnt buy one though because they where all far too big for me. We also saw a shoe in one of the shops that was nearlly the same size as me i wouldnt want to see the person that fits inside it as it was a size nineteen i think that it would even be too big for my friend lillias dad and he has really big feet.
I did lots of sleeping at the weekend as i needed to get my strength together for the last week of therapy, i have really enjoyed therapy this week i know what they want me to do now so i figured i might as well do some of it. Ashley and luana still make me do the bits i dont want to do like going on my stomach and using my arms, them two just never seem to give up but to be honest really enjoy all the kisses and cuddles and they call me a princess not sure who told them but i like it.
On tuesday it was maria ( my friends ) birthday so we had cake and sang happy birthday, they speak so many languages here so when we sing happy birthday it takes ages as we do it in lots of languages. I thought it was fun as ashley was bouncing me up and down to the music.
I did some more walking this week and moved my legs a bit more on my own without them moving my legs for me or forcing me, mummy and tony still get excited they are so funny. I thought if i did that they would leave me alone a bit but ashley and luana then find even stranger things for me to do. They have now started putting me on the treadmill the pair of them are bonkers. The treadmill is in the cage so i have lots of support , ashley holds my upper body as i tend to try and fling it forward and luana helps move my legs so i get used to doing the movement properly. I found it a bit scary at first but am ok now, they also let me bounce really high in the air when i have a little break which i really like as its like flying its so much fun.

I am also seeing rose everyday still, mummy and tony no longer come in with me as they have said i behave worse when they are there, this is annoying but true i haven't bothered crying at all the last few days in speach therapy i am still swallowing my saliva well which makes mummy happy as my clothes arent constantly wet through. Rose is now trying to get me to chew on a spikey stick and to learn to swallow whilst participating in other activities but this is really hard as i cant concentrate on swallowing whilst playing. Rose said i will get there but that i have to keep working hard.
Mummy has said that she will have to try and find a speech therapist back home who can carry on working with me so that i dont forget everything i have learnt. Mummy also said i have to continue with all my exercises  at home as well. Mummy and tony have been learning all the exercises this week. I rthought i was going to get a break when we got home but i have been listening to mum it doesnt sound like i will. I think life is going to be hectic from here on.
Well tomorrow is my last day of treatment i think its going to be sad to say goodbye to everyone but am looking forward to seeing all my friends and family when i get home. Daddy has had another baby with amanda whilst i have been away so i am now a big sister and will get to meet her for the first time when i get home which will be very exciting.

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