still here

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

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

its easter

urgent prayers needed for moriah

"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

"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

STARLIGHT DAY help our kids

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

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

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

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

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