congrats catherine jason and reu

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

my time at the conf

i know i never wrote about the wonderful confrence was great i met kasee stratton and saw tim harthsone and david brown and many others also was great to see marie and finaly meet rapael hes such a sweety i also went to the antartic workd and went shopping but i will start at the beginnin on the friday we got on the plane no probs jsut the usual forms go through security ay y didnt you put the pump through we allways have to tell them im attached to this didnt need out letter all good al good teill we got there they mannaged to loose the arm rest one arm rest of my chair didnt find it eather well got to hotel got to oru room unpacked our bags went downstairs to see who we could find we found nicole tebble and we had big chat to her looked at the hotel and went and found rob and time meet and greet were great saw soem old firends and made a few new ones saw nardia again andreas mum a lady that we started out with a hoel group of us not very big then sat we woke up late and went downstairs an attended the mroning sessions rob and marie talked bout there books and rob got me to talk about my experiences and stuff ten i went to shops with alex who is mums friend we got lots of souvaneers things then we cam eback for the formal dinner there was the silent acution i bid on a gorgous bag and got it sunday saw a few people said good bye and thenwe went to antartic world it is gorgous there then we flew home was great fun mum couldtn come coz dad had eye op and grandpa wa in hosp hes kinda k at the momebnt but he couild go anyday we dotn know when

my nz speach

wwell no oen told me to speak so i never wrote soemthing then rob got me to talk thenhe asked me to email him a copy but i didnt have oen so he jsut said write anythign heres wat i wrote
hey i jsut thought id email you the talk out of my head as havent written it down so here it is to my memory but do put in the newsletter a warning liek it not exactly wat you heard at conf as it wastn written down

My name is ellen howe many of you may know me form the list and from the conferences but to refresh ur memories i have colaboma of the eyes hearing loss cleft lip palate gut probs growth probs and hormone probs and a few other minor things along the way but hey i kept going i mannaged to come to newzealand with out mum this time jsut with mums friend who many saw now ten years ago this wouldtn of been possible i acutaly went to nz ten years ago to see my aunty liz and ill tell u what we had to do we had to send about three cartons of forumla to her house bout a carton of stoma surplies bout five extra tubes and a few other stuff now ten years on all i got is a bag with clothes formula and pump and thats basicly it as i allways in and out of hospital with abdominal migraies oh those memories have been coming back alot lately as that has been a topic on the charge list of late but after five years on tpn and a gall bladder removal i was finally able to finnish school with better xpecttations than anyone had of me i remember when my old head teacher of the support unit retired she said i was in about year eleven and she said to me i would love to read the paper one day and find that you are soemthing famous and im hopign ehr dream ccomes true except maybe nto in the way she was wanting but i am hopign to be a disability advocate especialy an advocate for charge syndroem how mny times have you all been told by drs that there is no hope your child wont walk or talk he or she isnt interlectualy able you will have to put in a this or that MANY im ;sure well we need to get that out of peo;le teach those people that they are worth soemthign and there is soemthing otu there ill tell you this i thought there was nothign out there i couldtn do floristry as tafe wouldtn let me but i do have a positve otulook onlife and that does help i dedicate my positiveness to my wonderful 83 year old grandpa mums dad who at around october last year had a stroke in mass walked bout ten mins to the local dr after said stroke now keep in mind grandma idnt know what this is shes great to then got in car and drove him i say and mean drove him to the ane where they told her she should of got an ambulance well a couple of months later they found he had pancreatic cancer and was only given six months or so to live then in may was six weeks and now its neraring christmas and hes sitll with us after a three week stay in hospice that man is my true hero ad i thank him for what hes shown me hes shown me we can all defy our drs and keep on goign and i want to pass his message onto others my wonderful grandpa was also a ww2 vet and hes also got diabetes and a number of other probs including when we end up in pathology close at times to each other the ladies faint coz we both got bad veins but he doesnt let it stop him and hes showd me not to let it stop me so everyone look for that posxitive person in ur life and keep them there its really special mum and dad have been great to and all my friends and family funny thing is i allways make firneds who cant talk inmfact ask my two taxi drivers who take me and bring me back from roselands every day out of one of five day lol in other words i go four days a week they would tell you everytime i get at the back kristys shoes r off thats coz she took them off and it ture i take my firends shoes of in the hot weather they catn talk to me but i jsut know its really good the programme i do at northcott is really good affords good for me to so i see my self at the next conf wich i do believe is in perth telling you all ive left roselands and am doing some volanteering soemwhere but really i wont leave roselands well not in two years wat i think is i may not do cpp there butr i may volanteer one day in the future never know the people in charge that hasve helped me otu the most are Rob last if it wastn for him id nto b doing the talking i do now days and then soem as people say lol Dr george williums who did so much for us who r disabled by soemthing or another that i heard he was sacked for tring to b an advocate good on ya George you are the greatest keep trying sharon who is a good firend and follows me through the lsit or used to and of course marie and ken patterson who started this great thing when i was little was just mum and ken marie rob and pauluine and dimo and now its all these wonderful people tim harthsone and david brown whos brougth charge to the world love you all and keep going

the 9th autralasion charge conf is coming up

well hello again i know im absent but the 9th australian charge conf is coming up in a week and im going will post more bout things when i get back but shoul be interesting ive been doing good its warming up here and im still swimming weekly with roselands its great i am going to try get a job round advocacy helping those who catn comunicate liek me and jsut being who i am i didnt need to go c the chest dr like the ent thought i mite it all truned out k we r all doing good grandpas still hanging in there amazing i know where i got my toughness form

updates

i finaly have my new char yay also last week i had dental appts this week is ent again been doing lots of fun stuff northcott and fam and stuff i am tired of the winter i want summer so i can swim

another charger

look wat i found another charger http://www.misslilyspad.blogspot.com/

my old blog

http://ellenschargeinfoandupdates.blogspot.com/
this is myu old blog only bout three posts on it but its me i started it and then i forgott the log in or didnt gorget and then made this one and this is my one but if u wanna see the old oen with only 3post take the link amy i saw kristy and dylan psot and steph and them can you send them this link pls or hang on theyd see it in ur blog anyway ill go psot them a comment but i love this oen

life

ive been thinking lately bout life and how we jstu no stuff and ive been reading jaydens caring bridge site and sendign all these good thougths to his fam and then i read how people wer being disrepectful to them it made me feel kinda sad how people can be ive known many people that have passed nto jsut charers peopel form hospital to many many from there and each time they would go i would go to the funeral and feel sad that not everyone was there for them i wish we lived in a better world but we dont oh well im doing ok tomoz im going to georgis 18th with sevie and then sunday im waking up in sevs new house yay and then donno wat in the arvo come hoem msn and all that also one of dads auntys died his mothers sister i was closest to her out all of her sisters this owonderful woman was a volanteer at the hospital when i was little and would come and chat to me every day i think i was her main person she sat with soemtiems shed take me with her when she went around the wards soemtiems she would just chat to the drs and nurses and people hes got two auntys left one lives round the corner well close and i havent seen her in ages i hope mary rests in peace and hope she looks after all the charge angels up there like she looked after me in hosptial

update on fam

thought i would tell some cool news my brother is engaged he got engaged in about april i think his gf is lovely lady we all like her very much and im happy shes apart of our fam she is in the navy and is away a bit but has been around alot lately and will be here on my bday yay grandpas doing well hes bout the same no worse or anything so this is good news for all of us we r all good and crazy and lookign fwd to a big spring wedding next oct i know who i wish could take the pics for them and you know who u are to can you save up LOL

appts updates

last monday i saw my endo lady im doing great she said i need nothing much done and is happy to start seeing me yearly after crhristmas she will see me again befor that then yearly the ent said i got bad glue ear and may need gromets he wants to c me in a month on saturday ill b 23 scary

needing to go to ent

ive been doing ok but lately ive been having some off balance i have been swimming everweeks and not using earplugs and think i have some fluid build up also mon is the endo check up so lots going on i wish everyone to keep my grandpa in ur thougths hes on his way out and grandma is that difficult time when shes i am scared of this but wotn accept help pls give her strenths to say that she needs help specialy as hes falling constantly he has cancer and is 83 most parents with special needs like oru charge mummys often dotn like asking for help and my grandma is jsut the same love u all

jstu saying hi

havent updated in a bit so felt like saying hi its amazing how many charge people r now blogging theres a new little charger fam that has started bogging foudn them in the google alerts the little girl is so cute in her pics and they have the gene amazing wonder how many other charge bloggers r otu there hidden

vision appt

well i had my eye appt thing today havent seen them in four years everythign is much the same but then when i was comign hoem in the taxi well often in the charge group we often talk botu peoples reaction to oru disabilites well today wa a wierd one first he goes wats wrong with her ok i dotn mind that soemtimes can allways tell them bout charge and all that but no the way this person asked wa liek a bad thing then does the government look after me now thats getting a bit far for my liking fine educate bout charge i have charge i was born like this bla bla b ut does the government look ater me is that really anyones bussiness then how do you look after god im not that bad i can walk alk and am better off than most of my friends liek one of my roselands friends lives with jst hder mum and she does everything and not everyone is like her but its like people think we are and its how do u do it i mean hello mum and dad work and they get a pension thats how and they save as much as they can to get me things i need like a new chair its jstu wierd the way people r these days and also the taxi wouldtn get my chair into the boot i mean really worries about me and how we do it and doesnt help get the chair in and out how stupid is that oh well

happy easter

well easter has started have a very happy easter everyone hope you eat lots of chocs yummmmmmmmmmmmmm

new chair and other updates bout me

well im on track for a new chair should get it befor my bday last report from endo said scoliosis gettng wors so trying more excersise and make the chair witnh more back support all the other sutf is going well the tube stuff istn it still hurts to much to change so seeing dr on mon think they need put me otu in the bin lol

eva and cris is walking for march of dimes

every year babies and charge babies are born to early just like eva was and every year some go to soon so this year cris and eva are walking in honour of cedie who went to the angels to soon tho i never met little cedie i allways felt i know her and in honour of kate who went to soon to donate visit march of dimes and click cris and eva to help them get to their goal for loosing someone is loosing urself xxxxxxxxx

Eva Nichole: March for Babies#links

Eva Nichole: March for Babies#links

a new charge cook book on cris and evas cafe press site its great go buy everyone

google alerts r cool

and you know y coz u can help ossbile chargers when it comes thru lol i think ive found a new fam and id loved them to visit me so here i am

google alerts r cool

and you know y coz u can help ossbile chargers when it comes thru lol i think ive found a new fam and id loved them to visit me so here i am

ive been tagged thanks cristalxxx

from cris
1) i mite acutaly be working soon in a book shop or florist
2) i would love to be able to help people like me in the world
.3) my house was acutaly built in 1860 and the otehr day we saw a man whos dad lived here in the 1920s
.4) i want to go and visit all my little charge friends
.5) i want to go around all the beaches of aus
OK, now on to the tagging...reus mum les and amelie jacks mum

happy new year

happy new year everyone hastn the last year flown by i spent christmas at grandmas we all ate and relaxed was great fun seeing the family all thether who i see but some i dont often i wed we all went to simon and yevette my cousins and we found all the fam up there at dinner at there house in leura and had left overs and thursdfay lunch was more elft overs as grandma and john came up for the day and brought me and mum bak saturday and friday didnt do much saturday went shopping ad mum and dad did a barbi out the back sunday we went to milton to mums c ousins house and all her friends came and we ate and talked last nite more of the same with a swim on mollymook beach yesterday and today came back last night sue was taking pics of alex sleeping in the new year was funny mums cousin and everyone r the best love my fam and them