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