ellen

ent

2012-01-13T22:15:00.001+11:00

ent was good basicaly the mri showed sutff wed knwon since i was little normal charge stuff that happens in there no real reason for the hearing loss id been having but he said to stop things that acrtivate te loss like oesteopathy and stuff but if i stop things that means id have to stop flying n i wanna come to arizona next year but mum says i can probably take something on the plane to help with that im happy was all good though

my new years

2012-01-10T17:11:00.002+11:00

well all i did do a happy new year but it soemhow didntdo what i wanted it so i thought id start again. Well 2011 as i said at christmas was a grteat one and this one will be better 2011 ended up in the mou8ntains for me Grandma came up with us and on saturday we went walking around katoomba shops and leura shops to. We were going to have din with the leura cousins but it happened they all came down with chickenpox and because i cant be vaccinated due to live vaccines we couldnt see them But mums brother and my lovely aunty came over later for drinks and we sat and taled and had fun working out what the top hit song the year and month we were born my top singer was madona LOL. We watched the firewors on tv it was amazing as ever. Sunday we jsut came home and stuff Ive also been swimming alot last couple of weeks have bee going to the rsl across the road for a swim to. I also got a new computer. Hope this year treats you all well stay healthy happy and have fun

New yrhappy new yr

2012-01-02T10:29:00.001+11:00

another christmas over

2011-12-28T12:28:00.000+11:00

Well another chrismtas over. I had a lovely chrismtas in the mountains with the fam Christmas eve we had din hee with my mums cous and my aunty thats mums oldest friend was a lovely dinner then sunday we opened pressies and went tolerua we ended up at our house and found mums wonderful brother n fam there mum n mandy ended up in kitchen making salads and then we all went to my cousins for christmas. It did start to rain at one point but simon and yevette had big umbrellas out and a nice cover on their deck pressies were a mad house with even a bit of regifting mum soemhow got a kids pressie so she gave that to one of the kids that had nothing. After food we went back to the faqirmont for a good sleep then monday we all sat round the pool swimming chatting hoding my new baby cous and i even ran into a charge fam. Left overs were also brought over by simon and yevette and john and mandy brought stuff to so food was inhaled kids watched movies then we had pizzas and pudding in our sweet with the hole fam soem went and watched another movie and lots mroe talking was had. Yesterday me and mum and dad went on a walk with my wonderful aunty an d uncle then we had to come home the mist over the mountains was spectacular and it wasw cold now we usualy have hot this time of year . Now for new year this has been a hard year for many and a fun year for many for me it has been bit of everything with highlights being charge conf harrypotter land disney lego land well my trip away anyway moments with fam and friends and of course being me.i do hpe the new year br4ings peace happiness and good health to EVERYONE just stay positive and keep going LOVE U ALL and im hear wit ya all

ahhhhhhhhhhhhhhhhhhhh yes

2011-12-15T10:58:00.001+11:00

today is thrusday. Today i go swimming. One mroe week of cpp left for th year. So many parties and things for this time of year Last week i had the afford christmas party it was so fun on the farm i even went on a tractor ride and my chair went on a tip back to. Satuday was the northcott rec party it was great and sunday we went shopping. Next week i will be in respite and roselnads christmas party yummmmmmmmmmmmmm then leura for christmas yay i love this time of year xx

Merry christmas

2011-12-09T12:29:00.001+11:00

Heres me at afford xmas part

two weeks

2011-12-08T10:39:00.001+11:00

i cant believe in two weeks its Christmas. Last friday i went to the book launch for a book the aus charge foundation have been working on they book is called why i am me all about charge syndrome. It was a great launch and the book is great it is available through www.chargesyndrome.org.au . I enjoyed reading it i helped tem a bit with some of it to was great to see everyone and to catch up again. Tomorrow i have the aford christmas party and i hope its not raining. Next wekk there is more stuff then the week after i will be in respite and more stuff happening. I cant beleive how fast this year has flown hope everyone is having a good end to the year and hope chrismtas is a good one to. This year i will be in the mountains for christmas YY . I cant wait to meet my little cousin that was born in november and mum better hurry up she hasnt even started her shopping.

an invitation to join a wonderful project

2011-12-06T16:57:00.001+11:00

Hey all well didnt even have ent yesterday mum canceled it but i just wanted to give all of you charge fams a heads up and ask you to pls join a wonderful project minnie made. Some of you form orlando will know minnie and her fam but for those who dont shes a charge mum n my fb friend.

Hello Everyone~
A recent book that Andrew and his class read has inspired me to kick off a very unique fundraising project to benefit the CHARGE Syndrome Foundation. Andrew's class read a book entitled "Flat Stanley". There is a project that goes along with the book that takes Flat Stanley on a journey.
Now own to OUR project. With the help of many of you here I am hoping to launch The Flat Charlie Project.
You may ask who is Flat Charlie?
Flat Charlie is a little guy that needs you help to become whole and make it the the 11th International CHARGE Syndrome Conference in Arizona in 2013.
How can you help Flat Charlie?
Flat Charlie is in search of host families that will take care of him and add a missing piece to him. This family will also have to raise money to help send him on to his next destination as he CHARGEs around the world on his way to the CHARGE Syndrome Conference in Arizona.

I am searching for families that will be willing to be a host family for Flat Charlie. Flat Charlie will be nothing more that a blank little paper boy that will leave our home first. Andrew and I will add a very special piece to him to help him on his journey. When he arrives to your home the amount time that you keep him will depend on just how many CHARGE families we can get involved. He will arrive with a list of his host families and a map of his journey..you will cross you families name off of the list and mark your spot in the map and send him to his next destination.
Now for the FUN part..Let's get the KIDS involved! I have also made a group page called "The Flat Charlie" group. You can go to this page and upload pictures of your family with Flat Charlie.. Make posts of what your family is doing with him..and let the next family know that he is on the way.Let's keep everyone informed as to what he is doing!
It will be each families responsibility to raise money to sponsor the leg of the journey. We ask that each family raise at least $100. How you raise that money is up to you..you can take up donations from others that what to sponsor your family as a host family or Flat Charlie and your family could have a bake sale..However you do it is up to you..Just keep the kids involved!
A team has been set up with the CHARGE Syndrome Foundation called the Flat Charlie Team..this is where all the money will go. The Foundation limits to 20 members per team but do not worry we will create as many teams as we need. We will all be individual members of the same team.
I am excited to launch this project and I hope that you will want to join my family in helping Flat Charlie reach the 11th International CHARGE Syndrome Conference in Arizona in 2013!!!
Sign up and let's see just how we can all work together as one!
Let's help Flat Charlie CHARGE his way to Arizona!!!
(We will take as many families as we can..amount of time spent at each destination will be determined after the exact number of families known. The goal of this project is to get the kids and their families involved in a fun exercise to help support the CHARGE Syndrome Foundation. The project is expected to launch in February and the final destination will bring him back to our family in May of 2013. He will be presented to the Foundation from all of the families involved at the 11th International CHARGE Syndrome Conference in Arizona, along with a grand total of how much money he has collected along his journey. All info will be sent in the form of email to keep the cost of sending Flat Charlie to his next destination as low as possible. We are trying to raise money so we will keep the cost down as low as possible for each family.)please spread the word. We want as many families included in this as possible. I will also be making a post on the Listserve! anyone who needs me can reach me via email mllambert123@yahoo.com I look forward to watching this grow into something huge! Together we can make The Flat Charlie Project a great success!

The first rule is that you must be a CHARGE family to particpate in this project. Any others that may join this group to keep track of Flat Charlie may participate by going to the CHARGE Syndrome Foundation website and clicking on CHARGE it for CHARGE and making a donation to any of the families on the team.

If you a...re a interested CHARGE family keep reading...

When I was thinking of this project I always wanted it to be something that the families as a whole could help with. I think that it is important to get the children involved as much as possible. When FLat Charlie arrives to your family he will be missing lots of things. It will be your responsiblity to add a missing piece to him. This is a way for him to belong to all of the children. Be as creative as you would like just remember to use materials that are as lightweight as possible. We have to keep in mind that each family will have to pay postage for his travels and we ned to keep him as light as possible.
It will be interesing to see where your family will take Flat Charlie..what kind of adventure will you guys take together. This will be a way for you to show us your town and your family. You will be able to add your phots right here to this page and make posts about what you and your family are doing with Flat Charlie. The kids can even check this page to see where he is at any time that they wish.
After you leg of his journey is over you can email me a letter about you experience with him while he was with you..include pictures too if you wish.
Flat Charlie will arrive to you with a map for his scheduled destinations and a list of his other host families..just mark your spot on the map and cross out your families name and send the list and map on with him to his next stop. The amount of time each family gets to spend with Flat Charlie depends on the number of participants that we have in the project. I hope to give each family as much time with him as possible. I will try to group certain places together to cut down on travel time. The last leg of his journey will send him back to my family and we will be responsible for getting him to Arizona in 2013.
Now on to the funding..
It will also be each families respnsiblity to raise funds to "pay" for their leg of Flat Charlie's journey. I am hoping that each family raise at least $100 but the possiblies are endless. The way you raise this money will be up to you and your family. You can begin at anytime..not just while you have Flat Charlie. There is a Team Flat Charlie set up through the CHARGE Syndrome Foundation website under the CHARGE it for CHARGE tab..follow the steps in the post on this site to become a memeber of the team. I can provide you will the picture of Flat Charlie that I am using if you would like to have it for you personal page picture or jsut use any picture that you wish.
If you have any questuons or concerns I am available to asnwer them at anytime.
I look forward to all of us working together to make the Flat Charlie Project a complete sucess!

Here are the instructions for joining Team Flat Charlie through the CHARGE Syndrome Foundation..all host families will have to join to be able to send their donations in to count towards the teams goal. You will a a fundraiser but be a part of a team as well.
1. Go to the CHARGE Syndrome Foundation Site
2. Click on CHARGE it for CHARGE
3. To the right you will see TEAM RANK..click MORE
4. Click on Team Flat Charlie..my name will also appear there
... 5. Click on the tab to JOIN OUR TEAM
Then just follow the instructions to create you our page..you can put any picture that you will like on your private page or I can email you the clip of Flat Charlie.
Now let's get STARTED!

oh and a tip form lisa wier if you are allreayd in the charge it for charge thing as a sparate indevidual you will need to create a new page to join the team pls message minnie on fb or at mllambert`123@yahoo.com I hope you can join us in supporting the charge foundation and helping us with this oh and for non charge readers of my blog i will soon provide you with a link to donate to my fundraiser for the flat charlie project oh and feel free to pass on to any other charge fams the mroe we get the more money and funds we raise

mri

2011-11-25T20:31:00.001+11:00

Well I had the mri today and i think it went good but we wont know till we see the dr. It was only half an hour and i had to take out my aids but everything went good. They offered e a tv screen but i didnt want it coz if i have my aids out how would i hear it and i didnt know how i would see it eather as you are sposed to stay still n not move. they put a helmet over the top of my head and i heard soem of the noised not much tho so soon we go to ent show him the cd they gave us and see what he says

thankful

2011-11-24T10:12:00.001+11:00

Though we dont do thanksgiving out here as alot of my charge fams do in america today i just wanted to wish everyone a very happy thanksgiving from me. Things i am thankful for today are my charge family, my family My wonderful drs and nruses who have looked after me over the years, My wonderful teachers that have helped me when i was in school, My lovely northcott carers and other northcott support staff especialy my cpp carers my firends and their fams and oi am trhankful for the internet and being able to connect with many people all over the world. I am thankful i wass able to go to orlando and meet so many wonderful charge fams klove you all

mri this week

2011-11-21T13:57:00.001+11:00

just letting u all know my mri is this fri funny thing is my hearings been k lately hm

HMMMM

2011-11-17T15:02:00.001+11:00

I have now done all my chrismtas shopping and now am ready for chrismtas LOL. other things r all good. I ccant beleive its nearly christmas i ave my mri next week not much else new here. I ha e been swimming again and loving it I love to swim so much.

A bit concerning seriously

2011-11-14T14:42:00.001+11:00

WOW as me and mum and dad were walking with mums cous down towards the beach yesterday we ran into my great aunty and got talking. She informed mum she had breast cancer a month ago had surgery. The concerning part is she had told grandma and greandma never told us wow she is a lovely wonderful fit lady with a great atitude t life but it was very surprising to hear her say it and more surprising that grandma knew and didnt say anything. Cancer is nto soemthing u jsut forget to tell soemone. Her husband is grandmas brother they r twenty years younger than grandma is. I love grandmas fam and i love my great aunty very much and i hope she goes well with her radiation and i seriously hope grandma hasnt got dementia or soenthing as i adore her to bits to. other things are going greatr. Roselands is so much cooler now days so much easier coz not as hot. Not much else is happening here justall the normal stuff

where did the year go

2011-11-03T12:00:00.000+11:00

as i sit here bad at Roselands house i wonder WHERE DID THE YEAR GO. We are allready talking a bout christmas in stores i saw on fb someones gonna start their shopping. In two weeks i am christmas shopping with cpp it will be great. This christmas we will all b in the mountains it is gonna b great. Though we dont celebrate the american thanksgiving there are allways many things i am thankful for and i thought id list them here i am thankful and remember these things when we wish everyone happy thanksgiving on the charge lsit serve. my thankful list My health My family and firends. Going to orlando in july and seeing hp land and meeting so many charge faqms like the krubys crystal and many many more, i am thankful for my lovely sil and my brother living with us., I am thankful that my friends are still with me today and i can remove the negative things out of my life if i need to i am thankful for the little things that happen every day the flowers the prety things in life the people around even the little smile from afar we all have much to be thankfulo and happy about and am feeling very happy and thankfu now

two years REALLY

2011-10-28T17:37:00.001+11:00

two years ago today grandpa left this earth was it really that long ago. His end was a hard one drs had given him six weeks about two years befor due to pancreatic cancer two years later many stents hosptialisations and tiems we thought he would pass he went. He had gotten an infection in the stent wich had gotten into his bowels wich had caused heart failiure. Grandpa was a veyr lovely charming man he loved mladys he was allways cheeky with everyone ever wondered where my cheeky side came form grandpa and grandma were together for nearly sixty years and grandma is still around at 85 ive allways loved my grandparents allwasy been very close to them mums parents would allwas do anything for me. grandpa would come up and see me in hospital even if he was in grandma would come up eveyr day to they did many things for me and grandma still does grandpa and grandma are the best and i am lucky i am old enough to know them both dads parents didnt live long enough for me to reemmber dads daddy died when i was about five r six i do have a few pics of him tho one wich i love is on where he is trying to get me to throw a foot ball to my brother and i guess i wasnt that into sport even then coz i was staring at the ball like wat u want me to do here dads mum went when i was eleven she was a great woman to she to had died of cancer i am lucky grandmas still around i love my fam so very much miss you grandpa poppy and nannie wish i could see you again and hug you again

back to roselands yay

2011-10-24T14:37:00.001+11:00

Hello all. I am very happy now tht cpp has or is finaly returning back to normal. Last friday we came back to roselands house after six long months it is looking great. Today i am back to the mnormal place where i can do my programmes normally such as editing my blogs on here. Other things im still going good. Last thursday i had my tube change with local nasetic lincatane it was ok. There is a special whistle you can use to but they didnt want to use it on me as it can course kidney probs and as chargers do have odd kidneys we dotn want to do that. I do have one kidne larger than the other and used to have reflux in there. The tube change went great i felt everything a bit but it was ok. We went to xray to try get my mri there is a month waiting list how crazy is that.. Other things are doing good i cant beleive it is getting close to the end of the year again i relised a while ago ive blogged more this year than other years. I think i should keep this up, I have even done my chrismtas shopping well practicaly basicaly all those bracelets ive got on crys evas mummys site over the year is going as xmas gtifts to people only ones that need presents to be brought are my brother dad who i got male carers at cpp and the male mannager person at afford everyone else will be getting a special hand made bracelet that will have a special story attached weather its for charge syndrome or cancer or crohns each of crys bracelets are special and i love them. I also cant beleive alot of the shops have christmas stuff so early i even got my cards a few weeks ago and am organising the xmas card exchange so as allwasy this tiem of year lots happening i do beleive i have a few drs i should see befor the year ends dental ent again and maybe endo i missed the one i=six months ago i love this time of the year it is allready warming up tho and i dotn like it to ot but the flowers are out and gorgous and the smells and sites are great hope everything else stays good for now.

Help crystal masionis and family

2011-10-11T19:01:00.000+11:00

some who read my blog would know of Crystal and eva masionis and soem will be aware that the fam has had a very hard time the past year with crys having cancer her eldest having crohns and of course eva being a charger jsut going to drs for check ups this all creates alot of bills specialy since crys has had cancer treatments again so one of her firends created a page for us all to donate http://www.helpcrystal.com/ it is a pay pal thing very easy jsut select the ammount on the side then click the paypal part and if you have an account sign in if not sign up and thee its done and also pass this around for her and for us all. if you anyone wants to read mroe about the family click on my link at the side that says eva or the picture that says eva nicole hugs

to my special mummys

2011-10-10T21:06:00.000+11:00

i found this on another blog not a charge but a special needs one the mummy posted this this is for all my special mummys out there specialy crys and sandy and all other mums LOVE YA ALL

Dear mommy,

I have felt your tears, falling on my face.
Someone else might think they are tears of sadness, because of what I can't do.

I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do : I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return.
I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures.
Someone else might think you are ashamed of having a child like me.

I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. : )

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid.

I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day- exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life- you tell me I don't need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me.
I know your body hurts, because I'm getting so big.
I know that more than anything, you want to hear me say your name.
And I know you worry that you aren't good enough, and that you will fail me.

BUT I KNOW DIFFERENT MOMMY.....
I know that even on your worst days, you will always be enough for me, and I will always love you more than you know

ok this update is for u lovely sandy and the rest of the kurby fam

2011-10-08T13:40:00.000+11:00

well i am updating for you sandy as you dotn have facebook and there isnt any new updates on evas blog. So to all others who been thinking of Crys evas mummy shes out of hosp out after second treatment and is doing well she has her next test in two weeks keep the thoughts coming people

update on the sweet charger

2011-10-07T15:46:00.001+11:00

the other day i asked for prayers for a sweet charge and fam i know through fb well jsut wanted to tell u all who dotn see fb everything went great and they r heading home i beleive positive thoughts and prayers can really work it doesnt matter what you do jsut do one or the other and it works other stuff im doing ok having fun looking at christmas in every shop lately LOL christmas has arived in alot of shops and its crazy

asking for prayers for a special charger

2011-10-01T16:16:00.000+10:00

Hello all its occtober and i have a very special request form one of our charge fams please pray for the very special charger in my fb pic. His name is mathew hisd mummy dena is asking for prayers and sutff on fb as he is going in for soem testing in cincianati. As we all know with these chargers or some sometiems these tests and procedures can be fatal. We know that a charger means the ability to fight pray for his ability to fight and for the fam send positive thoughts and let us hope the drs can do what they need to do to help him will update if i hear or see anything on fb thanks

update on hearing and bloods

2011-09-29T11:42:00.000+10:00

Well Last week i had some blood tests for my hearing mum had talked to one of her firends who knew an old dr of mine who swuggested all of these tests. I got the bloods last monday and got the results all negative for everything especialy what dad has YAY next is a possible mri. The gp is mroe help than the ent at the moment but he keeps going away. My hearing is stgill going up and down today it is down and i told another carer i thought she was the other one her voice sounded the same today. Other things all going well this sunday dads brother is coming down form Byron. Dont get to see him often am excited i am doing well other wise and cant beleive mtwo motns ago today i was cuddling my fave charge fams.

WOW

2011-09-22T10:29:00.000+10:00

My hearing has gone down yet again mum never got the meds. But she did talk to her lovely lawyer friend who now works in her office . and she said her gp is deaf blind and she ite have ideas so she rang her. This lady she knows is married to a dr who works at the childrens hosptial and he remembers me she got him on the phone and he suggested way mroe than what my ent has said. More different sorts of bloods not jsut for what dad has and he thinks i need an mri. What a lucky think kathy came to work with my mum LOL coz she has connections with an old dr. We could put her touse . Everything else has been good so much happening in charge land on facebook. It has been craz but i am all good now. I just cant beleive its three months till christmas. i also cant beleive jsut two months ago i was in america in fact two months ago today i was on my way id of been boarding the plane and getting ready to take off. Two months ago today id of been in a world of excitement. Two months ago today charge familys knew that in a week they would see me. Two months ago how fast its flown. I still remember those times and allways will. Meeting with my charge families was amazing. Seeing the places was amazing. I wish i could turn back time and do it all again. Si ce i cant do that I guess ill jsut have to hold the memories Love to all my friends and family big hugs to crystal and her fam asshe goes through the treatments and hugs to masons fam as he is in hosp and also LOVE YOU EVERYONE

a hundred years and fifteen days WHAT A LIFE

2011-09-11T19:51:00.000+10:00

That is how old my great great aunty phyll was when she died last night. She is and was grandmas aunty you see mums side of the fam is very compllicated i put it down to my aunty phyl having kids in her fourties LOL. Basicaly her sister was grandmas mum they had lots of siblings. Well grandmas mum had grandma and three others.well grandmas aunty phyl had mums cousin sue who is really grandmas cousin at liek fourty grandma is 85 and sue is 50 soemthing. Well anyway sue and my mum are close and i think of her as my aunty and her mum was just nin to me coz all sues kids and her grandkids called her nin. Nin was a great woman like grandma is a great strong woman lived at home till she was a few weeks befor a hundred. She has allways had the cheeky side that i have wich soem will call my charge cheeky side but i think could be my jennings family ansestroy cheek LOL. she was a true fighter and passed it to grandma me sue who has had three lots of cancers and survived them no make that FOUR LOTS OF CANCERS as of um last year. one of my cousins who has downs and many many others in my family i jsut love my fam and hope my super strong still driving around grandma makes it as long as my wonderful great great aunty did and i am sure she will and on that note while others remember what they were doing TEN years ago i was in school i sit here thinking well on the tenth aniversary of 9/11 my great great aunty died on the aniversary. send hugs to my wonderful aunty sue and her fam and of course all our wonder fam as i decide weather i want to go to cpp when the funerals on or go to it plus also keep evas mummy my wonderful charge mummy crys in ur thoughts as she gets her treatment from MROE GRRRRRRRRRR maybe nin could send her some of that fight down form heaven pls ninny of mine love u all

hearing update

2011-09-02T18:05:00.000+10:00

Well saw ent he ordered the blood test and had no ideas why i would be having these probs but he did say it is a good idea to check specialy as ive had a number of dbts from central lines years ago.. He has given me presedone and hopefuly that will help if not who knows

Getting fustrated

2011-09-01T10:34:00.000+10:00

I am so fustrated at the moment. My earing went again last night and its sorta back today. I dont get this its like up and down. i really dont want to loose mhy hearing.. Dads dr wants me to be tested for what he has as its something that could effect every organ and any organ. I am scared that i have it i am sure i dotn they dont even know that its genetic but im worried. Also every time i come to casula wit cpp i over heat ad im sick of it. They wont fix the heating for me ive asked and they say its the building and they won fix it. I wish things could go right again I want to be back in orlando in hogwarts or with my charge fams NOW. Spring i here and it feels like summer right this econd. Not much else is happening here. just the usual.

hearing is back

2011-08-25T13:06:00.002+10:00

just wanted to let eveyrone know my hearin is back. It basicaly came back on tuesday hearig appt tomorrow and we will see what it shows

last day in the US bye bye lovely america

2011-08-24T18:35:00.000+10:00

Well thids is the day we came home so basicaly we all were up at 4am and out the door. We checked out got into our taxi YAY only taxi that we had entire time that fitted two wheelchairs at the same tiem i felt at home actualy LOL. Well we got to the airport checked in walked towards our gate got screened in security for the millionth time allwasy check that formular and then found soem food. Then we went to our gate and waited for our plane. Our plane was on time YIPPEE i have heard stuff bout delta that wasnt so good but they were prety good this time. well on the plane i jsut slept and was lazy then we arrived in la. we had been told our luggage was in transfer and it was yay we got off the plane came outside and walked through asked about two dif people how to get to our transfer or at least to our terminal. We went down stairs and we asked where should we go go now we went back up and outside and walked around to terminal three and walked in. There was no one at vaus check in but there were some seats and stuff so we sat down. Amira wandered off to find lunch for everyomne then we ate and i was on fb after a while we checked in and went through security wich was ok. Then we walked to our gate and jsut sat down for a bit we sat in an area that wasnt our gate but was the transfer lounge for other flights to other flites i think. Then after a while we went to the gate and sat there. We waited a few more hours watched a plane leave then our plane came. We got on and i went right to sleep well after listening to the safety instructions though i know everything.. I slept basicaly all the way home and everyone else slept and watched movies i woke up a few tiems went to loo and played a game on the telle then slept. I woke up a bit befor the desent into sydney and just looked around. When we landed we waited for everyone to get off then we went through and came home. We came out the gate area and mum was there she was worried bout sev and amira and everyone getting a taxi and i said oh itll b a breeze compared to vagas and it was they got a taxi in minnutes. When i got home i ust relaxed and amazingly wasnt jetlagged. I know when i was on that night to kim my lovely charge mum she was surprised but not coz well i am a charger and chargers have different sleeping patterns. I had a great trip and really loved being with everyone and i want to go again

last day in harry potterland

2011-08-23T18:45:00.000+10:00

Well we got up and got ready to head out to harry potter land once again. After a wait for the taxis we got there later than we had intended but at least we didnt have to go through the ticket booth. We headed straight for harrypotter and when we got there we decided the best place to start would be hogwarts because that would probably take a bit so off we went. I loved walking inot that castle it was very dark in there at first so hard to see but once i adjusted to the light i was able to see we went up in a lift and we could of gone on the ride but apparently it was very rough and it wouldnt of been very good but we looked around the parts we could. We heard portraits talking and everything was very cool. After that we went back down and into a shop that was very crowded i got a top and an owl. Then we went to olivanders and got a time to come back for the wand show we then wand into dervish and bangs was great in there the had a little stall outside where they had a few things i got another owl a quill and then we coz of our wheelcvhair pass we could go inside and we saw loads of great things. we walked through dervish and bangs and came out into the owl post area where there were wands for sale i got harrys wand and i also got an owl mug. We the went into olivanders was great in there the wand show was amazing and then we ended up in the owl place again. we also went to hone dukes and i proceded to buy the shop out and zonkos where i got a pigmy puff ithat i called it sev i thought of calling it eva after my sweet cvharge friend but then i thought they mite nto say her name right we have a very special way of pronouncing and the man asked me so i just said sev. we then decided wed seen everything that we could we left that area and had a bit more of a walk around then headed back to our hotel for an early dinner because we knew the next day wed have to get up at four am for the flight back to la then home stay tuned a day of lax and flying

is that sev or dumpledoor LOL

wands

the monster book of monsters

the wands

an owl mug i got mum she could fit like two cups of coffee in there

heres dervish

HARRYPOTTER LAND

2011-08-22T19:28:00.000+10:00

Well the next day we had intended to go to harrypotter land early but that didnt happen. After breakfast we had trouble AGAIN finding a taxi that would take us and we were off to islands of adventure. We had been told by crys and a vew others wed need a chairpass and we would or should be able to use the one for the two chairs so as we got our tickets we asked the lady for a pass she goes oh you wotn need one of those so we went through and this lovely man where u show the tickets said have you got a pass we said this lady said we wouldnt need it he said well its allways good to have one so he sent us to the info help area and we got one for the group. This was a great help. We first walked a little through seus landing such a prety colourful place there and then we walked round to harrypotter land. The crowds were huge we walked in and we saw the lovely sign for hogsmede it was like a dream come true. We saw the hogwarts express went for a walk looked at the long queses tasted some butter beer delish but not good for the reflux and looked at the front of hogwarts. Then we decided we were better coming back the next day so we left the area and went to jurassic park. I am not the worlds biggest dinosour fan but it was interesting to see all the stuff they had. After we had a look around there we decided to maybe venture back to our hotel with a walk by some rides we also had a look at this lovely water area just outside jurastic park so lovely but we could see clouds coming. We walked through seus landing and amira and hamish went on a ride there. Then we got the RAIN it started pooring and the thunder and lightning started. We ran to the arch way where most people come in and out well we were there and we jsut stood there and watched the rain wich lasted about fourty minutes. After noticing everyone was leaving and the rain had cleared we decided to venture back to harrypotter for another look well was still crowded but we did mannage to get into the three broomsticks for some lunch.. It was nice in the three broomsticks. After that we really did go bac and just didnt do much in the hotel then had dinner ready for an EARLIER start to hp land

view form the train stationm

i loved it

lamp

sign

hogwarts look the crowd

the ferris wheel we looked at

we were across form there

entry way to three broomsticks

when we walked out thi is the view we saw

love

hogwarts and hogsmede

amira

hot and humid and snow was amazing

bye bye charge fam till next time

2011-08-21T16:57:00.000+10:00

Well sunday morning was the last day of the confrence such a lovely time so many great families to miss but i know we will keep in touch. Well as usual we went down for breakfast and sat near bel and a few others then i wandered off to see people and say bye to a few. That morning we listened to a lovewly speach form a lovely lady from perkins perkins is a great school all the people i met for there are true gems. I sat with pam for a bit she is a very lovely woman and i jsut so love her. After was the adult panel i think everyone loved me once they understood me tho they did need pam to help the interpreters i guess they picked her coz she has known me form the list since i was basicaly 18 so she knows all the aussie talk LOL. after that there was a lovely closing speach by the wonderful david brown you could of heard a pin drop it was so quiet. Everyone was in awe of what he said. i mannaged to say bye to a few people and i also had a little talk with annette our aus foundation pres it was wonderful to have her there. it was wonderful that she got to hear me speak again two years in a row. After that i said good bye to a few more people and we checked out to go meet sevs fam at the remada inn wich was wierd when we got there it was like we didnt have a hotel there was construction everywhere. We were fortunatly moved to another hotel wich was ok and we basicaly relaxed for the rest of the afternoon. Ready for harrypotter land. I wish i could of said good bye again to crystal and eva and the kurbys and many otheres there were so many people at conf. And i plan to be there in two years see you in arizona charge fams love you all

me with my wonderful list serve ladies and foundation ladies lisa wier pam and lesly k

love my ladies

adult panel

me and david brown taken i dont know when

me and rob we allwasy have a pic

me and kasee

sat at conf

2011-08-20T17:16:00.000+10:00

Well sat morning we got up and went down as sual well first we had genral session and listended to all the awards and learnt of the next confrence place. That was a lovely time jsut listening to all the great things after that it was sessions again i went to a transition session was msotly geared at younger kids but was ok. I also went into robs video session wich was great everyone loves that video. After that i went to an ent session wich was very interaesting. That day i also went to a endocronoligy session with conni and jeremy kirk i found this interesting they were talking bout smell and puberty wich made me think about some things that i have experienced. soem things i can smell soem things i cant well i guess it is apart of charge. After all the sessions i went back upstairs and then came back for CHARGE APALOOZA what a wonderful night. I sat with marcie and her gorgous fam her sleepyhead charger was snoring her head off was quite interesting that she can sleep through a party but apparently once they got up to their room she was wide awake all night. After a bit i wandered around and talked to families med soem sweet chargers and found a few and then i found crys and eva i danced with eva and we got a pic and jsut talked it was wonderful to spend time with crys and her fam marcie and everyone else the fb charge mums are just so loving so great i love them ALL and i thank each and eveyrone of them for entering my life.

sleepy tori yoho

sweet grace with zara lol our zara loves babies

i just love that face

from the morning neal stanger david wolfe past pres and current

an eva shot

this is the butterfly i brought eva we call her our butterfly and she loves lights

crys and rob chatting think about how us chargers take pics LOL

he took this pic of me with eva and crys and dan i have to say its as my wall paper on my comp eva had my camera shes such a photographer

first full conf day

2011-08-19T22:19:00.000+10:00

Well friday we got up almost missed breakfast and went down for the confrence. First we did breakfast and i found crys and eva and i sat with the wonderful fam for a bit then pam found me and said she wanted all adults upstairs in the adult lounge so i went up there. We basicaly jsut talked about the lounge and then i went down and decided to wander in around one of the sessions. Then i went to a session about technology most of the stuff i knew but it was quite interesting. Then i went into a 103 session about basicaly general stuff about charge. I saw a few great people in there then it was lunch. I sat with the wonderful masionis again and we had Rashas mummy at our table i knew them from the list and we followed their blog when she kept it up was lovely to meet her. After lunch i went to another session about the forces in charge i saw Minnie one of my lovely friends up there i know her from fb to and the list we kinda talked after the session. After that i went and looked around information central and talked to a few people. I loved seeing everything they had to offer. After that i went upstairs and got ready for din and charge idol. We then went down and at dinner i sat with bel a little then i went to find Crys and her gorgous fam i had organised a lovely surprise for crys to celebrate her cancer free and end of shots but it didnt work out coz i couldnt find everyone. But i did find sandy was lovely to chat with her for a bit and meet her sweet kids i wish i could of met josh but i beleive i allreayd have when i start reading a charge blog i get attached LOL and now hes in our hearts. after talking with them and with cr4ys and her gorgous fam i then went to charge idol at first i was up the back but then i decided i wanted to be closer so i went and sat near kasee who is my friend form our aus confrences she studdied under the wonderful tim harthsorne well i sat next to her and we watched each act and stuff. The best acts had to be of course the winner who was rachel but then of course kennedy wier was great and so were many others it was great to see the talents and remember that us chargers have alot of great sutff in it. After that i went to bed ready for another day full of sessions and of course palooza stay tuned

this was after one of the sessions or lunch crys friend zara who volanteered and crys with alexsis a sweet charger and alex evas wonderful brother is right there in the corner with the most loving smile

morning session look how many peopel thats nto even half

the wonderful masionis fam

me and sandy stolen of their blog crys in background

hearing update

2011-08-18T22:09:00.000+10:00

Well yesterday i hinted that today was going to be a big hearing update so here it is. Basicaly what happened was ive been having low hearing all week but yesterday was almost nothing i tried my spare hearing aid and was worse. So i went off to the hearing centre who couldnt get me in right then but checked the aids and said they were fine ent couldnt get me in till this morning so i went to our gp. I love the gp when ever we see him he gives us pressents chocolates and anyone want to grow younger he gives out creams for that LOL but anyway he said i had fluid in my ear wich could be the problem. so i went to the ent he said fluid is definately there but i allways got a bit of fluid in there and that shouldnt affect the boneconduction baha. he said i needed a test and as we had an appt for this afternoon we went the audiologist said i have a drop in hearing o both the bone conductive and the other part left is still the same droped bit but te same its the right that has dropped and the bone conduction has droped to like between two hundred and one hundred hurtz he said he was going to send this to ent and we will see where to go form here. we are thinking i eather have some viraly thing ive been chesty since i came back and alot of people at charge conf got sick after that. but he doenst really beleive its that coz i often have a chesty reflux thing and it hasnt done this befor or the ent also said i might need steroids so we will see what he says after he sees the reports the baha is still the best hearing aid though

CONFRENCE TIME

2011-08-17T20:37:00.000+10:00

i decided to do the next day tonight coz tomorrow i might want to post about my hearing appt instead. So hee goes the next morning we intended to wake up about nine so we could meet crys down in the lobby around then well that didnt happen we slept in. So after deciding we probably would of missed them we decided to wander down and see if we could find the charge stuff like registration. Well when we got down there the first people we saw was annette the aus foundation president it was a lovely surprise to see them she pointed us in the direction we needed and after a chat we went off. When we got to registration i found pam a wonderful lady who i have talked to on the list for years it was lovely to see her at long last after a big hug i found lisa wier the list mnoderater and kenedys mummy. she gave me the stuff and then we looked at the sales table and talked to leslie katies mum i so wish i could of met katie. We also talked to pam and met a few others for a bit then we went upstairs and i got changed into my swimmers. I went for a swi aned loved it i was in there for hours talking to people and splashing around. After that we went back upstairs to the meet and greet aand i was sitting there talking and then crys and eva came in i think i saw them befor they saw me and i was SOOOOOOOOOOOOOOO ESCITED to finaly mneet them at last we talk every single day on fb and have done for years and years. They are the greatest people you could ever meet. I also met lots of other families and people after that we went tot he little supermarket and i found amy and max max was asleep so i couldnt talk to him and couldnt really squish amy as she was cuddling him but they and evas fam are among the first people that got into blogging we were like a group of people blogging back then. After that i went to bed ready to start the next day

the view form the room

the supporters of the foundation

lisa wier list serve mummy and vp working for ever working

CRYSTSAL evas mummy and her lovely sis nicole

crys and bel

my eva onme of my fave little chargers i squeesed her so tight her glasses fell off

bye bye vagas hello orlando

2011-08-17T11:47:00.000+10:00

no pictures about todays post because i didnt take any. Well we got up earlier and went out for some food and we went to a shop on the strip wich had clothes so we could buy a few tops and stuff to show wed been in vagas. I got a beautiful tshirt with a butterfly on it everyone else got a tshirt sev got one wich i liked alot it said what happens in vagas stays on facebook. Another stop in to the maccas next door to go to the loo that is one good thing about macconalds then we went to games works coz sevs cool brother hamish wanted to play the games me sev and amira and ruby sat int eh cafe area there and talked while hamish and scott played the games after an hour we all went to the airport. We had planned to meet up at the airport but when we got there we were checked in right away and sent to our gate. We got through security with out many hassles but they allwasy screen the formula then arrived at our gate. The flight was delayed three hours because of some mechanical work in denver where the plane was befor. We basicaly jsut sat and read after we got on the plane really late we had a four hour flight we stopped in houstan texas but were able to stay on the plane then it was off to orlando. we got into orlando at one am. Orlando airport is very interesting because when you come out you go through like you do but to get to baggage and stuff there is like a shuttle that goes between the two terminals. After getting our bagsd we were taken to this area where the person said the shuttle would be after bout five minutes no shuttle go back in side another man says ur on the wrong leval takes us down stairs rings up a shuttle for us first one says we cant take you ive ordered a special van second one says now keep in mind we can fold my chair and take wheels of second one says vans on its way third one said no van is on its way ull b waiting for ever hop in so off we went. When we got to the hotel the doors were so dark i thought there was no one there and no lights after checking in and going up stairs we were so very tired that we hopped into bed we had to wait fifteen mins for our bags. Sev and her fam had gone to seatle forks where the twilight thing is. We hopped into bed and hoped we would wake up in time to meet crystal down stairs that didnt hapen more tomorrow sorry crys and kimxx

vaga mnms shops and circus de soleil

2011-08-16T19:25:00.000+10:00

Well once we woke up wich was very late and got going with was at lunchtime we went to the strip for a walk and went to mnm world. this was four levals of everthing mnms was interersting you got personalised mnms tshirts mugs every thing even a pair of undies had mnms. after looking around and buying our personalised stuff we headed up the strip to find soem lunch. Well an american vagas maccdonalds is about the same as a one here except it had cream cream and mroe cream after lunch we went back to our hotel and got ready for the show. We went to see ka circus de soleil it was AMAZING everyting they did was perfect no mistake made ever. After this we headed back to our rooms and had food and then went to bed and packed the bags for the next day wich is morning at vagus and afternoon at airport

mnms

theres where u personalise them

ka amazing

off to vagus a string of bad luck

2011-08-15T18:29:00.000+10:00

Well on the monday we got up early and headed to our shuttle transfer to Vagus. the ride was four hours long but a lovely drive from la to vagus the scenery is lovely. Arriving in vagus four hours later the first thing we saw was the TALL BUILDINGS and many hotels. When the shuttle was booked it had said we would be dropped at our hotel but we were dropped at another one in stinking heat wich thankfuly wasnt humid. We stood around trying to book a taxi after about two hours we relised we may of been standing in the wrong place so we walked around and we saw a taxi who could only fit one chair. Well i got in my chair and he wouldnt strap me in even though i asked for a seatbelt the driver didnt even give me one of course a few minutes later ive rolled into the front seat. Finally we arrived at our hotel and waied for everyone we got into our room. Our hotel was lovely we had everything you could possibly want fridge microwave a stove. After a while we got ready to go out and see the show we got to the hotel where the show was sol dout but we looked around anyway and ate dinner there. The hotels are totaly full of poker machines and lights our hotel has absolutly no pokies and it had a nice bar and stuff. We had a look at the machiens and the lights and got a ticket for the show the next night then we went back for a sleep but first everyone had icecream.

day three LEGO LAND

2011-08-14T19:15:00.000+10:00

well sunday we went to lego land it was amazing\. Everything was made of lego. first we went to the resteraunt as no one had breaky since our silly hotel had RUN OUT THAT MORNING. After that we went to the lego gift shop and then did a walk around first we went into the lego driving school and sevies brother hamish road the little volvos we then walked around in miniland usa. Saw Vagus New york La Hollywood and sanfran all made of lego. It was totaly amazing we then went to the lego club house where we can make legos and this lovely lady took us into this room where she showed us how they make legos IT WAS AMAZING. we all got a lego piece each wich had the three stages after that we had to rush back for our lovely driver to take us back to the hotel. When we got bac we ordered in piza amira decided she wass going to order extra large thinking well it cant be THAT BIG but it was HUGe about as big as a dinner platte. then we all got soem sleep ready for our next stage VAGUS

entry

lego white house that to me was amazing in it self the fact that all these buildings could be constructed out of legos

boat

Day two Disney n holly wood

2011-08-13T16:35:00.001+10:00

Well we all got up and ate breakfast pretty earlyat our crazy hotel. After that we headed into Disney land first we went to a couple of shops where I got a hat and a mist fan. We walked around rode the Disney monerail the Disney train twice then the Disney river boat then the jungle boat we also went on teacups and saw heaps of things. Disney was great we always got through quick. After Disney we went on a tour of hollywood saw lots of famous people they had stars on the ground with names we then went around past some of the big houses which were huge after that we came back to our hotel

disney monerail

crys this is the finding nemo ride thing i told u bout

there it is down there

in the disney train

sev and her mum we were woring out where to go next

in the river boat

pooh bear in holly wood

donald duck anyone that knows me and grandpa will know he allwys made donald duck noises

trip to the us

2011-08-11T11:30:00.001+10:00

ok sincer there wasnt much internet acess i didnt get round to logging i was going to one big post then i saw kim claytons has been posting a daily of each day of her trip so id thought id do the same as the and i still can . I am going to start with the flight.
Well the friday morning i got up really really early we all met at the airport and checked in. Then we went through security and customs and waited to board it was really good. On the plane i slept alot and played a game on the little telles. We landed in La at 7 am american time. Customs was a breeze. We walked out to the suttle area where we had to wait for ages for a wheelchair accesable one then to our hotel. We only got one room for six of us at first how silly. Afew hours after a sleep and getting another room we all went to disney land. Caught the parade it was amazing i loved it went on a ride or two nd walked aorund. I loved disney land.

parade

we saw cinderella

sev and amira grabbing a bite to eat

butterfly

here

2011-07-24T00:02:00.001+10:00

well here in la had a great flight

TOmORRAOW

2011-07-21T11:43:00.000+10:00

Tomorrow I leave for the US. Have one bag packed and I cant wait. I leave at ten toorrow my time then I will get into la on friday morning their time. Tomorrow friday night we r going to hollywood then sat sun disney land i will blog on ipad or rubys laptop at least one a day or every two days me and sev have our ipads my cous has her laptop GOING TO BE FUN i am not taking my phone im gonna get a cheep phone tere. I cant wait to meet you all my charge fam. This wil be my first ti,me to the us and my first trip tht far its going to be fun .

2011-07-21T11:21:00.001+10:00

charge is

2011-07-14T11:14:00.000+10:00

WONDERFULY crazy. I love being part of the charge comuity everyone has so much love for each other so much love and affectionl So many will go out of their way for others they barely kn9ow. heaven gained another angel to charge this morning and on fb there are so much love form charge parents and families i just love being a charger in my loving charge comunty see everyone soon for massive hugs

Just two weeks

2011-07-07T11:31:00.000+10:00

Well i am starting a Joyous trip series soon but i am starting now> In just two weeks we will be in the irport going to LA for FUN FUN FUN. In just three weeks today i will be with my Masionis family and problably my CDlayton family befor the charge conf starts at night. In just four weeks i will be at harry potter lnd I CAN NOT WAIT . it will be great to meet all the charge families that i have talked to for years i. I am sad to learn form fb one particular fam i hoped was coming isnt coming now their sweet charger is very very sick it is so hard to see chargers slipping awa but then i remember me and so many others are still here. That thought makes me happy because i get the chance to meet the ones that are healhty and get to have mamny hugs be prepared to be never let go see alot of you very very soon

like seven weeks

2011-06-04T17:18:00.000+10:00

In like seven weeks i leave for america YAY i come to the charge conf besides the conf we will b doing hp land disney land holly wood vagus and i think the grand canyon and probly few other little things I CANT WAIT till i see all my charge families at the confrence i am so very happy to finally meet all the chargers n fams i have followed for many years and i also cant wait to meet the masionis fam. I have spoken about crys and eva and their fam many times on here i first followed their blog as baby site and msn group six years ago now i finaly get to meet them along with mighty max and a few of the many chargers i follow here and through fb and the lsit i also cant wait to see lisa and kenedy wier and of course the kurby fam. It is going to be so great. I will also be very happy to give crys a big hug to celebrate that she has jsut today finnished her cancer treatment for GOOD exciting times so i would like to take the time to thank everyone for the prayers for hre fam over this year they r all doing great now and looking forward to meeting their fave aussie charger LOL love u all

needs to get it out

2011-05-26T18:09:00.000+10:00

You know that feeling you get when you just wanna get it out but you dont want to complain to everyone well thats the way i am just now. I am so fustrated at the moment Still no flights booked for hp land and the us trip its exactly two months well the charge conf is and we sitll havent booked. Luckily i am all registered for charge conf and booked in as the hotel is booked out. Secondly dad is taking on my old ros=le of the TO MANY DRS TO MANY PROBS while i am happy i a healhty i do wish eveyrone else could be healhty. His screaming is getting to me and its really tiring me out i try to ignore it and be positive and am for the most part but sometiems i jsut want to get it all off my chest. He wotn stick to one dr he has to keep changing so of course no one knows whats happening they are now saying he might have lupas encephalitis and some wierd prob in his eye wich he wotn get operated on. It is so irrational chargers and charge fams all know that we will change drs once or twice never every single appt. I feel i cant have a proper conversation with mum anymore coz of his screaming he tells me off for existing sometimes. I have to ring her every day wich is sutpid coz i live with her. I am so looking forward to camp and then the big trip in july and now for a big breath and smile and keep on going and stay positive. It will come allright eventualy i jsut wish i knew when so much going on i feel better now for getting all that off thats a good thing about a blog on fb you can write this stuff and certain people can read it but those people like my brother or his lovely fiance who loves me very much and i love them very much. but they can read in fb and tell mum where as here they wont. OOPS i jsut relised a duplicate goes to fb i dotn know that they pay that close attention tho but if anyonme thinks i should deleat so they cant read in the network blogs ap on fb pls leave a comment big hugs to all

blog award

2011-05-04T17:09:00.000+10:00

ward

Ahhh! My first blogger award! Im so excited XD. The conditions for accepting this award are:

Thank the person who gave you this award
Name 7 things about yourself
Pass the award along to 15 other bloggers

Contact those bloggers to let them know they have won.

first thank you to the loverly ruby my cous actualy some of you will meet her very soon so i shal lead her to some of my charge bloggies so she can see ur responces as i award u xx

1 I am super duperly excited for my first us charge conf trip and harrypotter land

2 I love working at afford on wednesdays where i do packaging

3 i am very happy to be me :)

4 i am hoping to live with friends one day

5 I love inspiring people and i hope to insprie many more at the charge conf

6 my family is so huge that i get midxed up

7 if there is something you dotn know about me pls tell me LOL

my blog award goes to the masion is family eva nicole, The kurby family angel josh and his siblings and sandy and phill, abby lynn carrie and her fam, kim and christopher clayton, moments with moriah, benbo, mightymaxk, conors song, 52 suburbs, the tyler family, angel steps, the jelly cronicles, our little hero, andi bean

its coming its coming

2011-04-27T16:08:00.000+10:00

the charge conf and harrypottter land is just three months away. I am thinking of a theme a daily post theme for my blog in July so you can all keep up with how i am doing and everything any ideas on what to call it. everything else is doing well here just doing my normal things

buying the BAHA

2011-04-04T14:41:00.000+10:00

Well we have decided that we like the baha so much that mum is going to buy me one. The audioligist rang on Friday and he wil order one and i can keep this one till he gets it in and then we will buy it. I cant wait I love the baha it is so much better though soemtimes it does produce an interesting sinphony of whistling. Everything else is great. Met another charge fam yesterday one that i have comunicated with on facebook and they live very close by well just over the harbour bridge We plan to see each other often they are lovely people. Also plans are coming along well for the orlando harry potter land and he charge conf i just cant beleive we are allready in April. Not much else new here at the moment i do have a bonedensity i need to get done form last year and soem bloods for the endo and then see him soemtiem in May and i guess we will see ent at some point to tell him how the baha is going. hope everone is enjoying spring or autum where ever they are it is finalycooler here especialy at ight. Had a lovely swim yesterday and i dotn beleive ill be having many swims at the beach for a while.

Baha

2011-03-21T14:35:00.000+11:00

On Friday i got the Baha. It is amazing it was such a quick and simple visit to the hearing center for the softband. It is amazing its jstu a little box on a band I can hear much better. I can hear peopel talking in traffic when i couldn't befor and i can also hear my own voice better. Sometiems i hear my self echoing a bit and it sounds funny and my hole head seems to vibrate but mostly its good The band does want to slide off though. I have it on a two week trial and then we may well be buying it in other news i am doing well. It is getting cooler here but still humid and sticky. All my charge firends are good to and it makes me very happy to read all the good things on the blogs and facebook. I am still planning on orlando and am working on my speach or it and looking forward to meeting everyone.

getting a baha

2011-03-13T16:35:00.002+11:00

on friday i am getting the baha softband it will be great to try other news everything is great

helloooooooooo

2011-02-23T20:35:00.000+11:00

my ears all better now am also happy that my wonderful evas fam r home together again nm happening here jsut the usual stuff

ear infections r yucky

2011-02-13T17:18:00.000+11:00

ear infections are yucky i have one. other than that im doing ok. Pls keep evas family you know the sweet charger on my side bar the one ive talked bout befor her brother had the surgeyr friday and is very sick my ear is nothing compared to some of these things tha they r going through

hearing update

2011-02-03T21:08:00.002+11:00

yep got moved to today YAY and saw someone who knows me well wich is good. Well we are ordering the baha on the soft band fr a trial should b here in the next few weeks in other things everything is doing well and no we didnt have floods

evas butterfly jewels

2011-01-23T14:29:00.000+11:00

crysstal evas mummy has been making bracelets like crazy in her time up at the hosp each month will have a different thheme this month is CHARGE in honour of eva and me and all our other chargers pls click on the link each bracelet you buy she will donate the money to the foundation and eac one is named after a charger cyrs is a great woman and i love these bracelets

http://www.etsy.com/shop/EvasButterflyJewels

hearing appt and positive thoughts

2011-01-19T19:06:00.000+11:00

jsut wanted to say my eharing appt has been moved to the seventh of feb apparently the audiologist has to c a baby thoguth she onlyu sees adults but yeah she has to see a deaf baby urgently so i got bumped the joys of drs and stuff send good thoughts to my lovely evas fam her brothers in hosp again yeah shes a charger like me her buttons on my side her fam r so great and they dotn need this riht now

hey

2011-01-18T12:30:00.000+11:00

well cant beleive its 2011 last year was a good but fast year hope this years jstu as good for all my firends christmas was spent in the mountains first christmas in memory we havent had to get in our car and drive soemwhere everyone came to us was great i got a new camera book some clothes and other stuff. for new years we went to sues house in milton her holiday house it was good to b with her as shes been so sick lately and sitll is i ask everyone to keep her in ur thougths as she has her next three rounds of chemo shes my third cous and is like an aunty to me her mum is grandmas aunty and her mum is fifteen years older than grandma and sues only mums age the rest of my fam r doing good i start cvpp soon in two weeks and am going to the hearing centre on thurs for more talk on the baha the ent and the earing centre are willing to work with us on this so this appt two with hearing centre charge conf later in the year and hp land YAY

happy new year

2011-01-03T18:58:00.002+11:00

happy new year to all my firends

oh christmas tree oh christmas tree

2010-12-18T18:14:00.000+11:00

it is nearly christmas and boy has this year flown so much has happend good and bad went to ent on wed taking baha to the next stage i have had a very healhty year this year and im very hyappy for that hope evyerone has a very healhty happy christmas

prayers pls

2010-12-04T12:10:00.000+11:00

pls send some good old postive thoughts to evas fam again they arent having the best year now her sweet brother is in the hosp with possible crohns and crys has allreayd had cancer pls pray with me that the new year is the best for them and we all get to meet up LOVE U ALL SO MUCH

five words about me

2010-11-18T12:57:00.000+11:00

my cous is doing a daily blog challenge up to nye i thought id go along for the ride and you can learn bits you may not know

lovely caring charger great friend

stole this of my cous booby really ruby LOL

2010-11-17T19:02:00.000+11:00

mycous is doing a blog challenge till new years so i thought id come along for the ride and give you all someinteresting facts bout me

home town
Sydney australia what do i love about here well it is jsutthe bussiest most interesting and diverse place theres allwyas something going on here go east you got the gorgous beaches where i live go west you got suburbia theres all different cultures to take ur pick we got it over here only prob is our roads are a car park slometimes and our streets have no arking sometiems no wheelchair access and lots of other bad sutff but go to the places old buildings beaches and even out of sydney minutes away form the mountains woolongong and the airport fly drive swim boat and walk ah sydney i love you even for your craziness

the third anual charge it for charge is now here

2010-10-02T22:58:00.000+10:00

Hey everyone i have decided to try help with the third anual for charge it for charge event charge it for charge is a anual thing done by the foundation to help raise much needed funds for the foundation id love it if you could donate to me and the chttp://thirdannualcifc.kintera.org/faf/donorReg/donorPledge.asp?ievent=434831&lis=0&kntae434831=E3E0FDD2DFBE4EFC82C24D58B4B36E9A&imgname=Account401534/images/293919_611081650443125.jpg&getMediaFormat=image&view=previewourse

:)

2010-09-18T14:45:00.001+10:00

a tribute to my many anasetic people

2010-09-18T14:44:00.000+10:00

The other day i was looking at one of the blogs i follow not a charger but soemone i know through moriah and soemone i love the way she writes. She posted a lovely message about how we allwasy recognise oru drs but not the ones that put us to sleep for an op she inspired me i had my endoscopy the other day and then i read her post i thought yes these people are the greatest to if it wasnt for the one who made anesetics easier for new borns and babies i probly wouldnt of been able to have the things i have had as i have relatively small airways. even if they dotn read i would still like to aknolege the work they have done they are the ones that got the drips that many others couldnt get. They were the ones that put the lines in when needed. They were the ones that knew me and didnt even really need to consult they understood me and they knew how to work with what i had. i feel lucky to of known these people and they are great people updates endoscopy went ok was actualy done by them i have hiatus hernia reflux is coz of inflamed oesophegus he says its neurolotical im going to gi on thrus

nearly spring cant believe it

2010-08-29T22:41:00.000+10:00

i cant beleive its nearly spring not to much happening here. Am heading to perth in october fr the aus charge conf then next july i am making plans to go to Orlando for the big cahrge conf i hope to meet all my charge families there that i have come to know through fb charge lsit and blogs they include kim claton and her gorgous charger crys and eva moriah and their fam kristy and the swann fam there are soem i know i wont meet but they will b flying with me in the plane all the way love to chis fam and of course mks fam and any other charge angels will be great to meet everyone also going to harrypotter land and some other stuff am goign with sevies fam will b great her mums allways said shed take me to harrypotter land when i relsied where the conf is i said lets do it then they want to go to disney land vagus the place where twilight is and well we cant go to hp land with out doing disney world can we LO looking fwd to seeing everyone at the charge conf and if anyone wants to meet up anywhere in the places we will b jsut let me know i will put a detailed thing on here n fb and the lsit later

YAY JUST READ THE BEST THING

2010-08-04T18:24:00.000+10:00

i jstu went to moriahs blog to do my daily check as i do with all my little chargers and shes coming HOME YAY a hole year in hosp and a recovery centre so happy for them happy for christopher to hes home to pls keep sweet mk in ur thougths tho shes getting better everyday and gracie is back in the hosp AGAIN also and i am having an endoxopy in a few weeks jstu to check up on stuff coz of my reflux and stuff

some chargers in need or some special prayers and thoughts

2010-07-27T18:14:00.000+10:00

hope everyone is doing well. I am very well at the moment still have bad reflux but am going to see dr next mon but right now i want you to keep a few charge families in your thoughts gorgous MK who i have followed on and off for a while and i have her mum on my fb is very sick after heart surgery readign their caring bridge was very sadening http://www.caringbridge.org/visit/marykatherinemaxson/journal?jid=5854389 Another sweet charger christopher has been having trouble with feedings and sutff after heart surgery. May be home by middle to end of week improving everyday. And Gracie who is linked to my blog through evas blog i knwo bit tricky but she is and they r my fb friends to is having problems similar to what i have had befor in my teenage years and younger life. She has been in and out of hospital and is needing a possible fundo and needs a hernia repaired pls keep these precous chargers close xxxx

a quote i found

2010-06-19T11:20:00.002+10:00

You can never stop grieving, you can only get used to it. Never be afraid to cry. Tears are not a sign of weakness, they show how much you love that person and how much they matter.♥ to me this relates so good to all oru firends with angels above us my cous posted it about one of her friends thanks charlotte its so ture LOVE IT hope u all do to

new layout and endo appt

2010-06-14T20:48:00.000+10:00

hope u all like my new layout endo appt a couple of weeks ago was great over heating could be two things going again in six months he thinks its all down to the cleft palate people with clefts often have the same probs he said i am doing well other wise think i could have nother ear infection bit sore been cold here lately but we r all well and hapy

reflux update

2010-05-16T13:50:00.001+10:00

well tube change if anything i think made the reflux worse and fentintinal made me vomit more hmmmmmmmmmmmmmmm oh well

tummy update

2010-05-08T18:20:00.003+10:00

saw gastro dr today havent see him in his room for THREE YEARS!!!!!!!!!!!!!!!!!!!!!!!!! Reflux will hopefuly get better after tube change on frday jsut what i thought hed say everything else is good keep evas mummy in ur thougths pls she needs chemo now i love my eva and her mummy and there fam they r the greatest charge fam or one of the greatest also if anyone still wants to donate to my walk with me page you can still do it til the 14th of may. All up nrotycott raised 4000 dollars for respite but more would be great thanks the link is about two posts down. OR if you are in fb and my firend jstu go to my profile and go to links you will see it there

positive thoughts pllssssssssssssss

2010-04-22T21:31:00.000+10:00

soemtiems i think caring for us is what makes oru mummys sick. Sometiems i think they work to hard one of those definately does my wonderful charge mummy crys she has to go into hosp next week to get a cancer spot pls send positve thoughts that there isnt any in any other spots so far so good.. also keep wonderful chi in ur thougths he was sposed to come home today and now possible has an infection could it be form the hosptial those places r known for infections hes the one under eva in links.

UP COMING APPTS

2010-04-21T22:33:00.000+10:00

well the other week i had ent found a middle ear infection wich is better now. Next is my tummy an whos records accordign to the secatary hastn seen me in FOUR YEARS WOW bt i have seen him since jsut not in his rooms. Next is my new endo dr as my old one has moved to another job and catn see me anymore will update as eac one coems up. other news my new old chair fell aprt a few months ago and i need another new one getting money back soon i am particpating in walk with me for nrothcott my service. to sponser jsut do this

Hi,Ihave decided to walk for Northcott Disability Services (a Member
ofAbility First Australia) on 2nd May, will you join me? You can
eithersponsor me or walk with me and raise much needed funds yourself
forpeople living with disabilities. The ...walk is an easy one, around
the...Doyle
Oval in the beautiful Kings School gro...unds in North
Parramatta.IfNorthcott is new to you, they provide services for people
with a broadrange of disabilities including physical, intellectual,
sensory,acquired and degenerative disabilities, as well as
challengingbehaviours. Some clients with rare or lesser known
disabilities findNorthcottto be the only provider of appropriate support and services.Northcott's website address www.northcott.org.au To sponsor me or tofind out more about my Walk, visit my web page http://www.thankq.net.au/tq_community_abifa?Ref=P10439/145

and click on the link to visit my page. not much else new jsut the usual stuff

about my side pics

2010-04-21T22:29:00.000+10:00

You may notice a few new side pics there. these are all chargers one is oru eva who i have followed form the very start. One is chis new blog a newish charger who is going through a lot the other chi one is was his other one but now its his mums but i keep it there and the otehr is moriah then below them i have links to people i follow. One is carrie chris and evas friend a wonderful woan and i admire her strenth. One is a firend of vicotiras moriahs mum who i have seen on there blog many times and i love her comments . Then there is reu eva and a few other chargers and we cant forget my lovely cousins ruby and my wonderful aunty lynne if anyone wants a pressie idea jsut opop over to omnia my link at the side that is my aunty and if you tell her you know me shell ship for free or ould she LOL. hope you all enjoy my new links

2010-02-09T20:23:00.001+11:00

dotn know what i want to say but i wanted to say soemthing hey everyone

its the new year

2010-01-14T18:00:00.002+11:00

so another year has started lets hope its a good one for all im am doing well walked over 400metres the other day in surf and all wonderful been seein family firends and places as suual not muchnew to report

another update

2009-10-31T22:14:00.002+11:00

well as october ends its time for antoher update as christmas gets nearer things get bussier my cous is all better now and had her first comunion the other week the big stuff going on round here atm is grandpa sadly passed on wed afternoon two years later than drs said he would at 84 form heart failure due to an infection in his stent and stuff he will b missed by all his funerals on monday so we have all been getting ready for tha tmore fam r coming tomoz and monday nite having a big bbq almost as big as christmas hugs to eveyrone out there

more stuff

2009-09-11T19:42:00.002+10:00

townsvile was great last weekend we went to a crocoldile park and ate otu eveyr nite swam and had fun my cous is jsut a miracle shes so much better wetn down to wylies yesterday with sue and mum didnt get in the water tho dont blame id nto of eather its jstu to cold yet LOL sues mums better and using a walker grandpa got out of nrursing home he hated ti im doign well jstu happy everythings going smoothly again hugs to all hope that the months leading to christmas r good oens only three months grrrrrr

thankful

2009-08-22T20:07:00.001+10:00

i would liek to thank everyone for keeping my fam in ur thoguths chloe is now out of hosp and still fragile shes not gonna go back to school till at least octobver as well we r really half way through this term only bout foru weeks left OH MY GOD SPRING IS HEAR AND ITS NEARLY SEPT HOW FAST but sues mums in hosp now i love my great great aunty phyl grandpas in his nrusing home so we can all rest easily kinda hugs i had glue ear ill update again soon

couple mroe updates

2009-08-20T13:41:00.001+10:00

well cous is coming home tomorrow YASY shes come so far grandpas going to thenrsing home tomoz and im going to townsvile in two weeks but ent today hopefuly that will b k my ears seem better but also some BIG NEWS i finally got a respite place after wanting one for a few years its same one as kristy goes to and going for trial next week YAY

2009-08-08T12:34:00.002+10:00

my cous is on the ward the renal ward YAY im going to ent in a couple of weeks then to twonsvile to see my wonderful brother yay

another update

2009-08-06T17:55:00.001+10:00

her vent is OUT YAYYYYYYYYYYYY but the kidneys still r not wroking

another update

2009-08-05T18:31:00.003+10:00

jsut wanted to say that my cous breated on her own yesterday vent will b otu soon YAY and kydneys r kickign in YAHOOOOOOOOOOO mums dads beign ntus tho he is insisting on going home even tho he cant ill b happy when it all is over im good tho

a couple of pics of my cous

2009-07-29T22:24:00.004+10:00

this is sue mums second cous and my third cous sue is grandmas first cous and her mum is grandmas aunty and grandmas mum and her mum were sisters sue has big fam and this is one of her other grandaughters abby

this is chloe my fift cous shes the one in the icu this pic was taken down at sues holiday house at new years shes on their quad bike
sue would hate me for putting this here but here she is nitie and all

and this pic here is a tag that i made of the pic above basicaly says keep her in prayers and abby is her sis to the one in the other pic

a small update

2009-07-29T20:44:00.002+10:00

jsut thought id update my blog fam who arent follwoing me in fb thru statusees that my cousins is getting thjere dowm to the smaller vent keep those thougths going eveyrone and grandpa got his age care assesment we donno much yet we r sitll doing our usual stuff we r planning to go c davo and his lovely lady soon looking fwd to that and i have camp in sept yay

posotove thougths pls

2009-07-11T16:43:00.002+10:00

some of u may know of mums cous sue who she swims with every day and is veyr close to and we all r reallyu think of her as my aunty not my grandmas first cousin who is really mums age lol she does look like mum so shes a second cam or liz to me well ehr grandaughter is in the icu in organ failur got swine flu pray for them but also for the hosptial who r apparaently getting mroe and mroe cases jsut now and hope summer comes quick LOL

july june update

2009-07-10T14:50:00.002+10:00

not much new has happende with me n my fam grandpas back in the hospice yet again but was home for my bday wich was good i had a great day dads all better now and we r all doing good mums cousins grandaughters in the icu at my old hosp with the stupid swine flu so mum hasnt been swimming with ehr coz well shes nto alloud out or when she is shes living up there so guess u could say shes learning wat i had to do in hospitals lol

still here

2009-06-02T12:13:00.002+10:00

yes still am here and three weeks till my bday i will b 24 i have been thru alot in my life but im grateful for those who have entred my life to show me there love and happiness soem fam updates mum is doing well dads got his heart fixed u had two stents put in has a family history nearly all of his unlcles and auntys on his granddads side and stuff died of anginas so its realy there mums dads still around we jsut had his bday the other week i am doing well to am now an offical adovate for a disability place in nsw aus YAY go me everything comes jsut give it time lol

updates on stuffs

2009-04-13T20:23:00.002+10:00

i know i havent posted much in ages everythings going well round here for nwo last endo appt was great though i have a bit to much weight on so need to be careful also next round of bloods she wants to do baselines for diabetes as i have a fam history of it mums got it her dads got it and people on grandmas side have had it also dadhas abnormal sugars ive grandas doign ok hes in hosptial again has been the last to weeks but he was home for the day over easter i go to an oesteopath who is helping me to walk more and lots of sreat sutff we had a great easter friday didnt do much saturday we went out to lunch with grandma and grandp yesterday we went to grandmashouse and had lunch again today jsut stayed on here all day

hmmmmmmmmmmmmm

2009-04-10T21:16:00.000+10:00

its easter

urgent prayers needed for moriah

2009-03-21T19:41:00.001+11:00

"A while back, our family friend, Gina, emailed me about doing a prayer vigil for Moriah. After Moriah almost stopped breathing this morning, I really felt led to do this now.Please join me in purposeful prayer this weekend in praying for my little girl. In whichever way you feel led, let us lift Moriah up to the Lord together, and pray for the source of this infection to be found, and for it to be resolved. For guidance and wisdom for the Nurses and Doctors...if any other tests need to be done or repeated...that they would know what to do to help Moriah get better.In Jesus' name I pray for my daughter to be healed, and that this infection would be done - once and for all.Email, text, call anyone you think would join us in this.Thank you all so much for your love and support.Will continue to update.Love,Victoria"
http://www.momentswithmoriah.blogspot.com/

would b great if everyone one coppied and pasted saw reus mum did it but icf we all past it aroudn who knows and also go leave them a comment to let them know ur thinking of them to big hugs

urgent prayers needed for moriah

2009-03-21T19:41:00.000+11:00

STARLIGHT DAY help our kids

2009-03-03T18:59:00.002+11:00

there are jsut some places that touch our hears coz we are a part of them like charge but some are also coz you see the great work they do for others one play that i have been with through hosptials and seen greatr work is the starlight foundation australia they have rooms set up in kids hospitals in aus and are looking for volanteers to raise money
The Starlight Children’s Foundation is again appealing to the community to help bring love, laughter and support to seriously ill children and their families by generously volunteering their time for Starlight’s biggest annual fundraiser across Australia - Starlight Day on Friday 1st May 2009.

This year we’re aiming for 4,900 volunteers to help us raise more than $1.6 million, and we need your help.

We’re asking our supporters to help us spread the word about becoming a Starlight Day Volunteer. On the Starlight website we’ve setup a page with all the info potential volunteers need to sign up, as well as all the tools you’ll need to spread the word via your social network.

Check it out at http://www.starlight.org.au/Howyoucanhelp/Pages/Volunteering.aspx

with out these great people i would of been very bored in my times in hospitals like so many others so help these people put more smiles on faces jsut like mine and even if you cant volanteer donate money theres a donate online page there to

sending hugs to many

2009-02-10T21:34:00.002+11:00

so much is happening these days its jsut amazing half of victorias on fire from bushfires long weeks of hot humid days luckily sydneys k but theresfloods in qld to

sending hugs to many

2009-02-10T21:34:00.000+11:00

tonight i am sending hugs to moriah and fam she is very sick with sepsis or soemthing ive had this many imes very scarey and of course to the victoria victims of bushfires in aus if youve watched on the news now up to two hundred dead wow what a world we r in how we take each day forgraned and jsut take each day it comes and say thank you for it

its the new year

2009-01-12T14:38:00.001+11:00

well its new year now its hard to believe how quick that last one went now we are nearly at feb i am at roselands in two weeks ive been away alot been down the stouh coast and in the mountains and ive also been siwmming lots to

congrats catherine jason and reu

2008-11-10T19:16:00.001+11:00

catherine reus lovely mummy jsut had her baby last week reus little sibling very great for them all love this fam so much so happy for them