Isabellas fun day out

Hi everyone well i eventually had a day off from therapy today so we went to jungle island in miami. Jungle is an animal park but it has all waterfalls and big plants and trees. I really like places with big trees as when the sun shines through i can see all the shadows and the light flickering.  When we first went in there was lots of parrots there we had a picture taken with the parrots and because i couldnt see the lady let me  stroke the parrots so i could feel what they looked like. We went and saw all the animals and watched the shows i liked the shows as everyone cheered and made lots of noise and it made me smile listening to everyone. There was a snake in the show that was so big it took four grown ups to hold it. I never touched this one but i was allowed to touch another onother one and then the man put it around my neck. That was very strange i didnt cry and smiled i think mummy was a little scared though but she was trying to be brave. Mummy got scared of the parrots when she was feeding them as one nibbled her finger and it made her scream which made me laugh.
We then went to see the kangaroos, this was my favourite part as i got to stroke them, one of them was really nice and tried to nuzzle into my face i kept trying to put my face on it but mummy wouldnt let me as she knew i would probably lick it and they dont have a bath everyday like me so they arent clean.
I had so much fun today and at the end of the day i got a monkey teddy bear that hangs round my neck so i dont drop it, its very furry and fluffy and i really like it. I think tomorrow we are going to have a relaxing day so that i have lots of energy to get up early on monday for therapy again.

Review of week one

Hi everybody well i havve just finished my first week of treatment, i have been finding it very difficult as i am doing things that i have never done before and it feels very strange for me. Although i find it hard as i have never done this much exercise before i am enjoying it and really like ashley and Laune who are my therapists that help me. They make me do four hours of physiotherapy a day with only a ten minute break so i work really hard. They make it fun though and there is lots of singing and games involves. Whilst i have my treatment there are other therapists in the room with other children i have my treatment with Maria and francesco. It makes it so much more fun having friends there as they all sing to me whilst i do my exercise and everyone cheers me when i do things and this makes me smile.

I have to be up at six o clock every day and start of with stretches and sensory work as i havent lost my baby reflexes which means that when something touches my foot i automatically lift my foot up rather than curling my toe forward. They have to get rid of this so that i can walk one day hopefully otherwise even if i get strong i wont be able to put weight through as i will also lift my leg up when my foot touches something. We then do strengthening exercises like sitting up and lying back down and putting weight through my arms and trying to keep myself in the middle.
After all this i go in my special suite the elastic bands that join the parts work like the muscles do so that when i have it on my body has to work against the resistance of it. It also supports me in positions that i am too weak to be in so that i can get used to being in the positions and working the muscles in that way. Laune and ashley ten put me in the spider cage which gives me a bit more support to stand so that laune and ashley can help me do even more exercises, its very hard work and i am very tired at the end of it but they do make it fun.

I finish all this after twelve and then have a whole afternoon of other therapy i have met a very nice lady called pattie she is a doctor and she works with rose between them they think they will be able to get me eating although they have said it will be lots of hard work and will take a long time as i have never learnt how to swallow or how to use my tongue. They are stimulating all my senses at the minute and trying to reactive the automatic response that gets me to swallow. This is partly done by massaging the jaw line i really dont like this mummy thinks i am mad as she would love a face massage but the feeling is so strange for me that it makes me cry. The thing i hate the most though is when they try and get me to move my tongue as they use different flavoured wooden sticks they do very basic things at the minute like pushing my tongue down as its always in the roof of my mouth but i have never had anything in my mouth so i try and stop them, its not all horrible though, they have a little vibrating toy that they put against my skin which i really like so we do one rep of horrible stuff then have play time. As well as all this i also go into a hyperbarick chamber so that i get lots of oxygen to help me as i have very little oxygen around my body this is fine as i can just relax.

 Next week i might be doing some sessions with a horse after everything else as my doctor has said that its very good at automatically correcting the body and helps with balance and core stability obviously wont be doing it on my own as i cant sit up on my own but i will have someone helping me am not sure when this will be next week but will put some pictures on here whhen i go.

Hope everyone is well, i am definately looking forward to a rest this weekend as am very tired today but it will all start again on monday.

First day of treatment

Well i had my first day of treatment today and everyone has said what a good girl i am. The therapist that will be working with me is lovely and i really like her. we had lots of cudddles in between exercises so i did even more than i have ever done, mummy was really pleased as she didnt think i would be as good as i was. I did cry at the beginning of most exercises but that was just because it was the first time when they repeated some of them i was much better i even went on my tummy and didn't cry.
Tomorrow i get to put the suit on and go in the cage, there was two other children there today and they where lasughing loads in the cage and seemed to enjoy it lots. Its lots of fun there the staff are brilliant and they all speak lots of languages,i have a friend there called maria who is a bit older than me but she really enjoys the treatment and is learning to speak italian during it as the staff all speak ots of languages so they sing songs to us in different languages. Mummy thinks that  my first word will be a foreign word now.

We then met a really nice lady who is a doctor here in america i worked my charm and she loves me now, mummy said that she specialises in children that dont eat and who struggle to communicate. She seems to think she can help me and has agreed to see us whilst we are over here so that mayb e i will be able to eat one day without needing to be hooked up to my machine. We have an appointment tomorrow with her after my normal therapy so that she can assess me. THyis costs quite a lot of money but mummy thinks it will be worth it and as everybody was so kind and generous we should have the money to pay for it from all the fundraising.
I also have my check up tomorrow for the oxygen therapy unfortunately i will have to be up very very early as we have to go and see the doctor at half seven in the morning so that we can hopefully start in the afternoon. My days will become extremely busy as i will have therapy every day between eight and twelve and then the specialist will see me between half twelve and half one ( i think she was booked up so has squeezed me in over her lunch) and then if all goes to plan i will get picked up for oxygen therapy at one fourty five. I am going to be very tired but it will be worth it and i can rest at the weekends.

Will write again tomorrow and let you all know how the appointments have gone

Our journey to Miami

Hi well i am here and safe in Miami. It all started with me mummy and tony getting up at six in the morning i was awake and being a very good girl although i did have a sllep on the way to the airport and all the way through customs and passport control it was just all very boring. Mummy was glad as she thought there would be problems with my milk and medicines but everything went very smoothly. I woke up just in time to annoy mummy and tony as they where trying to eat breakfast. We then walked to the hamleys shop and i played with a giggling monkey that tickled me. Mummy and tony then took me onto a big aeroplane they must have heard how famous and special i was as i got to go on the plane first and had a special seat right in the middle of mummy and tony. I really liked my seat. The nice ladies also gave e a blanket which i had loads of fun eating. My favourite part was when we took off and all the engines fired up mummy is normally scared at this bit but she said she felt stupid being scared when i was loking round smiling. i did really well on the plane and stayed awake playing for about five hours and then for the last half had cuddles on mummy and tonys knee and fell asleep although they where worried as they said i had got eavy and kept making their legs go dead.
When we got off the plane the funny americand didnt listen properly and brought me a grown up wheel chair we all looked very confused when we got off the aeroplane so we had to go back on and wait for my chair. We had no problems getting through the airport but getting to our car was a nightmare we had to get a bus to where you pick up the cars which wasnt easy as they had no disabled access or anything so tony and the man had to lift me up in my chair and then try and get all the bags up. Mummy was annoyed as when we got their no one would help us with our bags and they had to struggle to get it all nto the office to get the car. I think we where all starting to get tired now as it was nearlly one in the morning in england. I got uoset as there was two other children that screamed right near me so i had a little cry but soon stopped when mummy gave me a cuddle.
I am really enjoying our room as they gave me a big double bed to myself and extra pillows so mummy has piled all the pillows uo so no matter how much i wriggle i cant fall out.
I will put the pictures on here later of me on theaeroplane but its only half seven n the morning here and tony is still asleep sodont want to put the lighht on to sort the camera out. Will miss you all loads and will speak soon.
Paul, claire give buster a big cuddle from us all. Oh by the way mummy forgot to say the two biscuits in his bag are posh doogy treats hopefully you and claire havent eaten them by accident lol

getting ready to go

Hi every body ,
just want to say a huge thankyou to every one who has help make this possible, my mum is busy trying to get packed at the min but i keep being sick or just dirtying lots of clothes so she is finding it hard to get on top of it all. We are nearlly all packed but think mum is getting worried about how i will cope with the flight as i am not used to be sitting up for so long but i am sure i will be fine and if not i will just lie across mummies knee so i can have a stretch.
We will post on here regularly and let you all know how i am getting on and we will put lots of pictures of me having my treatment in my gallery on my blog so you can all see.
this is only a quick post as we have still got so much packing and organising to do