My life since america

Hi everybody well things have been so busy since i returned from america, the flight from america was just awful and i cried the whole time. When we went to book in Virgin Holidays had messed up our booking and had put us on a flight out of the wrong city so we were not allowed on our flight that was on our booking form as they had filled all the spare seats because of the volcanic ash. Mummy became upset because she was worried about me not having a lot of milk left for me as we had to throw a lot of it away once we found out the flight was not delayed as your not allowed a lot on the aeroplane and we never for one minute thought thatthey would have forgotten to book us on a flight. They thhen told us that we could fly the next day which was fine but it took a long time to sort out as they had to arrange my specialist seating for the plane. WE then had to go to our hotel for the night although Virgin refused to give mummy and daddy any money for foof and told them they had to claim it back when we got home they said they would try and find extra milk for me but they never got back to mummy about it and the next day there was no virgin reps anywhere in the airport. Then things got worse the flight number and time that they gave us didnt exist but eventually the check in people found what flight we were on mummy yet again clarified my seat would be on the plane as although i got stronger in america i still cant sit up on my own and when i try and sit up its like a gym work out to me and you cant do that for ten hours. We eventually get on the flight and it was definately not a Virgin flight the plane was so old that i had concerns that it was capable of long haul but that wasnt the end of our problems just merely the start.We went to our seats and couldnt find the specialist seating for me so mummy and tony asked the air hostess were the seat was and after waiting for twenty mins we were told that they didnt have one and that we would need to hold her up right for the whole flight. When we complained that this wasnt safe or possible we were told that we had to make a choice that we even went on that flight or got off the plane and waited till their was space on another flight and that we would have to wait for a seat to be sent over from england and because of the volcanic ash they couldnt tell us when that would be. Mummy explained that i had  a lot of medication that would be running out and that they had no more milk for me as they had to courier it over from the uk before we went to america so if we got off the plane it would mean not only starving me but the chances are that i would end up in hospital fitting due to not having more epilepsy medication. In the end mummy made them bring my car seat up from the hold so that i could be secure but the seats were so small that there was  no where for my legs and i cried the whole way as i was in so much pain from my positioning. We asked if they could put the ar seat somewhere so i could lie across mummy and tony lap but they refused to take it away which also meant tony was trapped in his seat and couldnt get up the whole flight.
When we landed all the landing crew came over to the plane to take pictures because the plane was so old that they didnt think they existed any longer. That just kind of summed up our flight home and the fantastic service we recieved from VIRGIN.

Anyway back to good news things have been so busy since we returned home as mummy has been trying to find places for me to have physio and to change her working so that she has more time to focus on getting me strong, the plan now is that from september i am going to school monday to thursday i am very excited about this but will miss everyone at kiddi karu nursery as they are the best and love all my friends there. Then on afriday me and mummy will drive up to bedfordshire and go to the Celebtral Palsy Physiotherapy Centre  for two or three hours of physio depending on how well i do and then once a month we will go up there for a week of intensive therapy. As well as this we have found a wonderful charity in chelmsford called Charms who provide Hyperbarick oxygen therapy so every saturday i go there and have treatment for an hour and a half i didnt like it at first as i have to wear a hood but i am getting better and getting used to it now last time i just cuddled up with mummy and went to sleep.

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.

week three of treatment

Hi, appreciate these posts are not as frequent as at the beginning but we are all just getting very tired by the early starts and  long days and tend to be falling asleep when we get in as you will all notice on our return as despite the heat we are all still very white from being indoors all day.

Well this week has been a hard week i have really not been happy, i have done my best to try and stop them making me do my exercises as all my muscles have been hurting. I have been screaming and shouting constantly. The one good thing is because of all my noise i know have my own private room  for treatment which i prefer as i get all the attention and ashley and luana cant talk to any one else. I am slightly confused by it all as previously when i get really upset people stoip what they are trying to make me do and give me cuddles but Ashley is really tough and just carried on, she tried to talk to me and calm me so i knew she was starting to give in so i cried louder and then i couldnt believe it they all just ignored me and carried on doing my exercises. I gae up then and just did it, think she must have some magic power where she isnt effected by my cute face. Its ok though as i still got lots of kisses and cuddles in between exercises.
My worst exercise has always been when they make me lie on my stomach and put my arms on the floor they keep saying i need to put weight through my arms to strengthen them but i dont see why . Ashley keeps saying that i need to learn to put my arms out when i fell to the side but there is always some one there to catch me or i am on soft things and end up on my face which i think is funny. Nobody else does. This week however they managed to some how find an even worse exercise, they put me in my suit and i thought i was going n the cage which i like but i have learnt that the cords take my weight and fling myself backwards in it. However this time they took me to a wall and tried to get me to stand up tall against the wall, they where holding me against it and there was no cords or anything to take my weight well i screamed and screamed as it really hurt. Am hoping they dont keep doing it but knowing them to they will. They eventually put me in the cage but instead of me praticing sitting which i love they made me do more standing and then had me doing what they called squats. They are awful dont ever do them they really hurt. Mummy had to give me a hot bath after that and a massage as i was very tight.


Not only do i keep getting subjected to this every day but then once its finished i have to go and see rose, i like rose but i dont like what she makes me do. Mummy says she is my seach and language therapist and is going to help me eat one day hopefully. I am not even bothered about eating so just wish they would leave me alone. Rose keeps putting sticks in my mouth and vibrating things and then presses on my tongue on face i hate it and i tell her i hate it. I even try and push her away and grab the stuff and throw it on the floor but its like she has a magic drawer and more just keeps appearing. Mummy and tony are rubbish as i was doing well at fighting as it was hard for rose to hold both arms whilst trying to control my head so they decided to come help out and hold my arms i couldnt believe absolutely no loyalty. Think i made mummy feel bad as sometimes she had to leave the room and tony just had to hold my arms. Rose keeps trying to make me swallow but i dont like it she just doesnt seem to listen and keeps going on about it, every day i get this its just awful.

Well by friday i had been through this all week and was sure that they where all going to give up i mean how much screaming and crying can these people take. o i started off screaming as normal, and they carried on right through it i couldnt believe it. I then went to mummy for my ten minute break and had a cuddle, i could tell mummy was finding it hard as she was cuddling my very tight and seemed a bit stresses. Ashley then came and got me and it was tiome to go again, in my suit i got, we decided to see whether i would stand in the suit like in the pictures we put on in week one with my therapist behind me. Last time i cried when they first stood me up as hated my feet being on the floor although i calmed down for a bit, they then pushed my feet with theres to make my legs move as i couldnt move them on my own. Luana said she wanted me to try again so we did, i decided not to cry and to try my best, luana and ashley where talking to me and we went up the corridor towards the parents room which is about five foot away if not further when i got to the parents room i saw mummy and tony look out as they could hear us, they both jumped up and everyone started cheering it was so good so i though i would carry on. I then decided thast i didnt need luana to keep kicking my legs to move them so started doing it on my own everyone was really happy but they laughed because every now and then i woulod do a really big step. I have decided that it was fun having every one watching me and being so happy with me so i caried on walking round. I had one little break in the middle but ashley said that she worked it out and that i had gone nearlly three hundred feet. I have lots of work to do as need to get so much stronger to be able to support my weight but everyone wasx smmiling all day.

I decided that this was a nice feeling so when i went in to see rose i decided not to fight as much she still tried to do the stick and i didnt like that, rose promised me that she would stop using the stick when i learnt to swallow on my own so i did a swallow and they all cheered, i really like this cheering. Rose mummy and tony all then just kept staring at me which was a bit weird but i like being center of attention so it was good. I then swallowed again and again and have decided its not that bad after all so keep doing it now and am still getting cheers which is really good.

After this we had to see Pattie who is our doctor that is working on a home plan for mummy to take home to try and get me to eat one day, it seems like she is never going to give up. pattie already knew about me swallowing as really please with me as well. She was showing mummy and tony the exercises that they needed to do with me when we got home, this was my favourite bit as she was demonstarting them on tony so he had to have the stick in his mouth as well. Pattie has put me on something called a pro biotic as my blood results came back and all m,y levels are all overthe place. Pattie started talking to them about poo it was quite embarrasing but then mummy and tony couldnt stop laughing because pattie started to draw them diagrams of poo and how they might look different it was very funny. Even Pattie started laughing.


I am now looking forward to a relaxing weekend although we are going to a baseball match this evening as they have fireworks at the end mummy thinks i will like this as well as the noisy crown. I will let you all know what its like tomorrow. I have some video of me walking but we need to get the correct software to put it on our computer so it might have to wait till we get home

Review of week two

Hi everybody, sorry that i have not put anything on for a week but we have all been so tired as we get up every day at six o clock sometimes a bit earlier and by the time i have finished my physio speach and language therapy and oxygen therapy it is nearlly seven o clock at night when we get back to the hotel so its then bath and straight to bed for me and mummy thenhas to get things ready for the next day and try and eat dinner.I am still doing really well with therapy and really like therapy but have been a but more grumpy this week when Ashley makes me work hard. Ashley says that maybe my muscles are starting to hurt but mummy thinks that some of it is because i am used to getiing my own way and am spoit. What ever the reason i have to keep working hard to get better as i really want to be able to run round and play with my cousins some day.Or at least be able to sit up and play with my toys and maybe get around some other way. Which reminds me Ashley keep making me do arm exercises which i hate more than anything in the world , well nearlly anything in the world my worst thing ever is speach and language therapy because rose is trying to teach me to swallow and i dont know how to which is why i dribble so much. Mummy says that until i learn to swallow i wont be able to eat so that i have to keep doing these exercises with my tongue and rose keeps rubbing my jaw line and no matter how much i try and get her to stop she just wont. She is very persistant. I get loads of cuddles from Ashley and rose and they cheer and sing lots when i do good which i really like but they are not like other grown ups as they dont give up and let me have my own way which is very annoying. I just realised that i havent spoke about my oxygen therapy mummy will put some pictures on for you to see a bit later but its like a large inflated tube that i get into with mummy once3 we are inside they zip it up. Its betterthan it sounds there is a thick mattress inside that we can lie down on but its high enough for mummy to sit up in just about once inside i am meant to wear an oxygen mask, i hated it at first and got very upset as the mask reminded me of hospital but i am now getting used to it although if mummy isnt watching i  might try and sneak it off. Mummy says that it would be very relaxing and trys to make me have a sleep with her as we are in there for over an hour and its the last thing we do before home time but so far i havve refused and managed to stay awake and wriggle and kick mummy which i think is much more fun. Mummy doesnt find it funny when i fall asleep as soon as we get out though.
On friday this week when i was at the center we had two american figure skate champions come to visit us i had my picture taken with them and the press turned up and took my picture as well, thankfully mummy had done my hair in pig tails so i looked particularly cute. They kept telling me i was adorable and making funny noises at me . I smiled for the pictres but refused to open my eyes as soon as they finished i opened my eyes and did a bigger smie i am so funny sometimes. They where really nice and gave us tickets to go and watch them that night in a ice skating show i will tell youn about that in a minute. Before i came home from the center i also met another man he was really tall mummy said that he had two daughters who where very strong and played tennis and that he was famous too as he managed them and helped get them so big and strong. His daughters names where venus and serena williams. He was a very nice man and had his picture taken with us, he didnt  have his picture taken with any other families i think its because i am special. I have a picvture i will put on although i dont think it was a very good one as the flash wasnt on so the pictures of me withhim and the ice skaters havent come out very well but leo at the center took some on his camera so i will try and get copies of them.
The funniest thing happened next leo from the center asked mummy to come over and give him a hand and speak to a reporter about me and how well i had done with the treatment, it was only when she got here did she realise it was for TV she had to stand there on her own in fronmt of the camera talking about me and the center and she didnt get any help and no one asked her questions she was all alone. She was ever so embarrased but said at least she was talking bazout her favourite topic ( thats me). Mummy had no make up on and had been up since six in the morning she is just glad she doesnt know anyone near here who would watch it.
Well we went to the ice skating that night and i loved it we sat with sttafano who is a little boy who i have my treatment with and his family they are from italy so they speak italian to me i like it. Thye ice skating was in a big ice hockey stadium and it was very loud with everyone cheering and music and lots of flashing lights which i loved. I am now lokoing forward to a relaxing weekend where i acn catch up on my sleep mummy is going to give me a massgae and take me to the spa pool to try and relax my muscles so i cant wait and then hopefully it will be nice weather and i can go nd play on the beach for a bit

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