Hey

Hey is anyone outthere? Im goin great. I cant believe its nearly april and easter we arent going away not sure what we are doing yet. The aus confrence is fast aproaching and i have arizona conf in mind. I also met some pp, fromeaster seals tues they came to see cpp and they were all from chicago was very cool. To meet them and show off what we do.

HELLO BLOG LAND

Long time no update i just looked and relised its been a month. Well thats because theres not much to say really everything is the same =. Been busy at cpp and enjoying life and being thankful for everything. Weather has been lovely and winter is coming. I am excited to be going away for easter up to dads brothers place mums brother =also lives up in Byron to will bee good to spend the eqaster long weekend with them all. Not much else is happening

m

Not much is happening here. Cpp is going great and so is everything i=else im now at afford mondays instead of balmain loving. being there two days aweek. I also been swimming alot and enjoying the weather even tho it is almost exactly like orlando sunny mornings rainy afternoons. Hope everyone good

where has the month gone

WHERE DID the month GO. now we are in febuary, I have been well went back cpp last week a very good start to the cpp year. They have three ipads and one of the carers was wondering y i was playing words with firends yesterday when the ipad was right there. VERY ME LOL. our fam has some cool news my wonderful brother david is getting married to my wonderful sil some of you have seen pics of her if u r on fb we all love her very much. They r getting married in VAGAS we arent going but mum mite have a party later in the year. Not much else new here just staying healthy and enjoying what bits of summer we have got had a gorgous swim on monday and i have been swimmin g lots also been raining here lots tho so nice days are golden at the moment LOL. next year we go

ent

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

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

another christmas over

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

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

Heres me at afford xmas part

two weeks

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

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

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

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

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

HMMMM

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

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

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

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

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.