Elise's Diary

[Bucky]

Hi Elise,

Sending you some sunny get well wishes today.     I'm sorry you haven't been feeling well.   

I hope your infection goes away quickly so you can get back to being a 10 yr. old, soon to be an 11 yr. old next month!!   

Gentle hugs to you & your family.

Bucky

P.S.  Do you still take pictures with your camera?

[elise]

Dads ok... looking after me lol.he had his birthday when i was asleep. how horrible that must of been for him.

i dont use my camera because its at home......... it sounds like im gonna spend my birthday here. im just fed up. been here for 9 weeks now

[jonnell]

Im sorry your not feeling good,  I am praying that you will get well soon.  Jenna and I send our love and best wishes to you and your dad.

[elise]

Just had physio...............sitting on the edge of the bed was fine but when they started helping me move from the bed to a board to my wheelchair......my sides pulled so i had to get back into bed. i feel as if im letting dad down because he really wants to go home because he keeps going on about me trying for the physio and thats how i will get home quicker.... i know that and im trying my best. it can get quite frustrating at times because im trying my best and its as if dads pushing me to do more.

the hospital foods are absolutely horrible. with the trachy i have to have tape change daily...around my neck so it holds the trachy in place. dad does it... which makes me more calm its just worrying when he cleans it.

how are you all?

[elise]

ive just been told that my trachy is  going to get taped over for 24 hours. see how i cope with that and if its ok then it can come out! im worried though because its being
taped over in a minitue.

[Linda196]

Elise, have you been able to hold your finger over the trachy to say a few words yet? If that's been working, then taping over shouldn't be a problem, and you'll be constantly watched while it's covered anyway, and the tape can come off in an instant if need be...sometimes even being worried about it is enough to ask to have it opened sooner than expected, and it's nothing to worry about. When the time is right , you'll tolerate it just fine, and that's one more step to getting rid if it!

I must say young lady, you've been sounding very grown up in your recent posts! I do believe our little girl is growing up...fast!

[elise]

yep i can do the speaking with my fingeer on the end and i can do speaking valve. we are being moved into a room on our own because i have a bug.... only some sort of cold and they dont want other patients to catch it. been speaking about my birthday in here. then ill have two birthdays lol. im not bothered about stopping in anymore. becasuse i know ill soon be out.

[elise]

today i woke up..... had breakfast and visitors came  ... it was a surprise because im not expecting anyone this week. i dont really have much news . the doctors are on about weening me off the trachy slowly and the physios came twice today. if theres any more news ill keep you posted.
sending all my love.

[elise]

Today i got up, got dad up and we started getting ready as usual. The physios have only just came and theyre wanting to get me sitting on the edge of the bed. i asked if they could wait till dad gets back and she were saying stuff like your a big girl now, your dads not gonna be here all the time. i refused to do as she said and its upset me.

[elise]

Pooh. Thankyou very much for the guardian angel and the little pin badge with it. I look at it every time i worry about someone or something. I also look at it before i go to bed. Your little note made me smile. Thankyou.

Im just getting to that point now where i am fed up all of the time. Its better when i have visitors but i hardly have any, and they dont stop for long so when they have to go i cant help myself, tears leak out my eyes. It cheers me up while there here though, its just thinking of things to say to them. When they bring presents is the best though hehe.
Its nearly been a week since ive had my trachy out. I can talk from when they took it out and im just worried about when they change the dressing, wont my scar be stuck to the pad or something? its just so worrying lol.

It were getting to that point where there were nothing else they could do so dad were getting excited and i were for going home but its just the physios wanting to keep us in longer so we were gonna discharge ourselfs the next week if it were just physios coming and nothing were said. He seeked advice first though but a couple of days after the doctors came for a meeting with mum and dad, mum came back, her eyes red raw and dad looked upset, my bones are weak as well as my muscles, but they will come back with my muscles and mum and dad can fix that too at home. There wanting to keep me in another 4 month and all it is is physio.

Im sick of the physio now, there wanting to get me standind which im not confident enough at yet and i dont feel i can do it. id rather just do leg excersises. I want to swear at the physios and tell them to leave me alone. This is endless torture. When will it stop?

[genko_b]

Oh dear Elise - 4 more months in there? That does seem like a very long time. Since I'm not a doctor it's hard to know why you would need that, but I imagine they think it will be easier for everyone for you to get enough physio if you just stay there rather than traveling back and forth. They really must think it will help you so you can be strong when you get out. But I'm sure it is discouraging for you and your family.

We will be thinking of you every day and hoping you are getting better and stronger so that when you do get out you will feel like doing things and being out and about. All of us here just want you to feel better and be stronger and we think you are such a fine young woman. You are so lucky to have a family that takes such good care of you as well.

Our best to you all on this Easter Sunday.

Genko

[lynnmarie219]

Elise,

My oh my....you sure do have so much going on and you just keep hanging in there...you are so very strong!

I can also understand what you mean about having visitors...it must be very nice to see different people now and then instead of the same old people at the hospital every day...even though I'm sure they are very nice and want to help you! I mean...how can they not just absolutely love our Elise and her family??   

Hang in there Elise.....you are in my thoughts....sending you lots of hugs!

[Poochie]

Hi there Little One, how you doing?  I'm so glad you like the gift I sent you.  I just had to buy it the minute I saw it.  I love mine so much and it reminds me of you all the time.

I pray every night that you will be well and happy real soon.  I also ask that you be given some extra courage to overcome this latest set back you are going through.  I can't imagine how you are feeling, but it must be so horrible. 

I wouldn't recommend you swear at the physios, but I know exactly what you mean.  When I was going through it with my legs and the therapist was turning and bending and stretching them I just wanted to scream and punch her lights out. But I knew I shouldn't, so I behaved myself.  However, it wasn't at all easy.

Please try to do what the doctor's tell you, so you can get released with good grades.  I don't want to hear that you and Dad broke out and are on the lam.    

Maybe with the nice weather setting in with the sunshine and warm air, you could persuade the doctors to let Dad wheel you outside for some fresh air. 

Hang in there my little heroine, you have made it this far, you can do it for a bit longer.

Hugs, love and smoochies,  Pooh

[elise]

Thankyou everyone.

Well at the moment i have shingles and ive been put in another side room ........ it is ever so painful and im scared to go to the toilet because of the soreness.
We have been given some creams for it but they dont seem to be working, it seems to irritate it more.... my aunty suggested a cold compress... something cold always helps but dad not allow that......please could anyone help?

Thankyou

[elise]

Well just as i were getting sick of being in the  hospital, we were told we could go home 2 weeks ago on thursday!! We all cried with joy. Im at home now & it just feels so much better than being in hospital. My mood has picked up and i am laughing and joking again. What it was, they tried me on a new tablet  December instead of my cyclophosphamide and Methetrexete injections, it could be a miracle type of thing, but i got all of the side effects, like water in lungs, muscle weakness, strugling to walk, bad back ache and all my muscles swelled up. It was like water in the body. When we were staying in the hospital , we made great friends with the receptionist Anna, She was easy-going and you could have a joke with her. She just made my life better whilst i was in hospital.
The day we left, I made a friend in the hospital, i were talking to him because he was worrying, he had to have some wiggly's put in, he had two lumps on his lungs, so i were explaining that its nothing to worry about and what happens and things. The week before i went home, id had my own central line out and i was perfectly fine! in fact, i had a chinese on the same day! it was delicious! .......I went to the hospital school and we made biscuits and in the afternoon, i played on harry potter on PC. Then at 3 o' clock my school teacher John said "you know what this means doesnt it?" because i was going to go home! i was sad and happy at the same time because  i really enjoyed the school at hospital.


We got back to the ward to say our farewells, the receptionist said "youve been in hospital for 101 Days! " it shocked me and made me laugh because she'd obviously been counting! LOL. When i got home, Emma (my sister) was there, she did welcome home banners and balloons, thre was a little Buffey on the table. i was so happy to be home!




Now at school, im having problems with 3 people, Demi, Christie & Ellie. Ellie is being complete nasty to me an it upsets me, she were kickig my wheelchair and then the enxt day she were trying to show off saying look at my tiara! ad it wasnt a tiara, it was a headband so i said ellie.its a headband and she went no it isnt, and even holly and mrs stafford agred with me and said its a headband and ellie said elise you wouldnt know, so basically she was saying that im thick :l and yeerday we had a massive arument, because i posted my horible day at school on facbook. an she swore at me and things back, so dad told me to delete it becauseit was causing arguments, so i deleted it.... i know dad wasnt being funny. but then elie came online and said why have u deleted that post? i said because i wanted to and the argument grew bgger and bigger then she said elise why don u go and boil r head i ur wee like  alwYS Do/ hat made me laugh beause a 5 year old would come up with something like that and i dont even boil my head in my wee.... so i said to her that shes acting like a 5 year od and she went and yor not? when actually i wasnt oing calling her ames and telling her to boil her head in wee! LOl. then she said lets just forget about it and ignor each other, so i said okay, and did happily....butthen she emailed me saying if u think ur so clever then right a paragraph ou me go on, dint think so and i messaged her back saying ellie im not foolish, your saying that s you can show your mum and she an go to school and tell the headteacher. but ie already told the headteacher mr loker, once about her annoying me and he sorte it out, then christie called me bald or somet like ive ardly got o hair, i thought christie i could rely o, but obiously not.....that really upset me and i started crying, s dad went to shool yesterday morning and told the headteacher,he said that he will sort it out and that f she does ne more, she will get expelled. now i have no frieds,,,, theres one boy thats disabled too. i chat with him... theres onthing wrong with having a friend thats a boy is it? mr loker said i can keep off school till after half term to calm down..thats nice of him .

Next friday ive got to go to hospital for my cyclophospamide and there gonna change my plasters. worried lol because its back to canulas and i havnt had one for such a ong time! i know i will be fine though

This saturday me dad and mum are going shopping and then on sunday we are having a meal and tonight im having a pizza! arnt i spoilt? lol

From elise xxxx