friends

I have had many firends in my life
School firneds
Most of my school firends were people with disabilites like me in highschool i was in a mainschool class for some subjects and rest of the time in the unit the main school people were lovely but they were only there really in class. There were a few that i got close to and i still talk to now on fb these oens were on the src with me and some of them would come up and chat.

Hosptial firends i have had many friends in hospital these people made it easier to handle some of the things that were happening. At the old campedown hosptial i didnt have many firends that i remember but at randwick i had so many. My old drs would walk into a room and say was like home when we were all in. The nruses would allwasy know to put us together and one rang up and said there were two options once one with one of my firends ina back room and one near the nruses station she new i wanted to b with my firends so she put me there but of course had to move me a few days later coz i had temperatures and they needed to watch me. Most of my hosptial firends had cf and quite a few died but i keep in touc with quite a few on fb and their families they became like a second family to me. Some of my closest hosp firends were Clare and her mum Mel and her mum Steph and her fam and many many nmore. The nruses became my firends to it was hard not to they would soemtiems have me every day for nine months. they would adovocate for everything i neededc chase up things for me take me places and organise certain activites My faveourites were Carla kara beck and many more.  Sch also had A captain starlight who i loved i would soemtiems go to the starlight room or watch the starlight tv or at least play the games my faves were bingo coz i didnt have to c the tv to do that and charades tho i allways found that hard to see. There was a lady who was a real fairy who would come and vist people to she even came to my 21st she was a great lady.  We also had play therapists who would come and do different things these were great ladies. There were also soem clown drs not real drs this started in 1997 and these people would go around making kids smile. My favourite clowns were Dr sniggles Dr twang Dr have a chat and dr fruiteloop they were the first clowns now there r many mroe and i dotn know them all but there is a clown page on fb and dr sniggles and me are nwo firends on fb again after many years she is mamazed at how well i am doing. They would make me balloons talk and have fun I loved all the friends i had in hosptial and thanks to fb i have stay4ed in touch with many of them.
Northcott firends
I have many firends through the service i use these are great people and i love to hang out with them when im at nrothcott activities most o them r in a chair like me and totaly get everything that is happening thanks to northcott i now have activities i can go t sometiems and see people and i do a programme there to it is great for social life and they are a great bunch of people.

Charge firends i have many firneds through charge syndrome on fb and in the yahoo group i am on these people are totaly great people and encourage everyone and everything they support eveyrthing i do and are allwyas happy with my achievements i call them my second family to like the hosptial firneds I love my charge family with my hole heart and i know they feel the same

Health living with charge syndrome

first befor i talk about my health i want to explain a bit about Charge syndrome Charge is a genetic syndrome the gene ws discovered only in 2004. Each letter stands for colaboma a hole in the eye Heart problems of any kind such as holes enlarged ventricles artresia of the choanine wiuch is bacaly the area in the nose renal probs gential and grwoth abmormalites and hearing loss. Some people with charge have mishape3n heears facial paralysis and ond other problems such as gut motility and hromonal probs and cleft lip and palate they have that or the artresia i got the cleft lucky me.
My vision is six over sixty my hearing is 70 to 120 defibels i wear a bone conduction hearing aids. From the very start of my life ive had many surgeries mostly on my tummy i have very bad gut motility problems and have often had bouths of tpn and a period of five years on the home tpn.l I had abdominal migrains wich were often realy bad they ended up taking my gall bladder out in 2003 just befor i was eighteen.  I have been tube fed all my life got my first tube at eight weeks old i have had many different tubes a gastrostomy a tube into the jejunam central lines went back to gastr4ostomy feeds around 2002 after a very bad central line infection tube feeds was their last hope and i mannaged it again.  I also have had many central lines and many tummny surgeries my adult life i have been much healthier

Family

I come form a very big supportive family at home its jsut me mum and dad and my brother David who is now 28. Dad only has one brother who i see less now than i did when i was younger. Peter dads brother lives up near Byron Bay and doenst really keep in contact with us very much we are lucky to talk once a year i keep in touch with his daughter my cousin Nina through facebook. We would see them mroe when dads parents were alive They died when i was ten or eleven. dads family has many cousins all living a long way away. They are very accepting of my disability and are allwyas happy to see how i am doing. Mums family are the ones ive had more to do with Mum is one of five ner her brothers ad sisters have allwyas helped out one of her sisters has a downsyndrome person to so they are all very supportive of me and my needs. Mums parents are the msot loving people you could ever meet they were allwyas there for me and all the otehr grandkids as often as they could. When i was in the Sydney Childrens hosptial grandma would be up eveyr single day. I have allwyas have been very close to grandma and grandpa and have many fond memoires of them. Grandma comes form a veyr large family to we have very many extended relatives so a family get together can often be quite busy. we only live five mintues form grandma so we see her often Grandpa just died last year they were married for nearly sixty years. David has allwasy been very supportive of me we have been known to have our usual ups and downs as most siblings do but i adore my brother to death and he loves me. He had a very hard time when i was younger coz of all my hosptial visits he would often be left otu mum has a good friend from when she was little who has a son similar age so shed come and take him for days as often as she could. Dave ended up boarding for his highschool years and is now engaged to a wonderful lady form Tasmania. We all love Lauren and are happy to have her as a part of oru family Mum also has two best firends who i consider my auntys Julie and Alex these ladies do any thing and eveyrthing for me and allwasy have. I am lucky to have such a supportive family as i know alot of people with disabilities arent as lucky as i am.

Early years

I was born in 1985 in King Georgi the fifth hospital in Campedown and was imediatly rushed to the old Campedown Childrens hosptial where i spent the first six months of my life. I was born with a cleft lip and palate colabomas of the eyes hearing loss and gut problems. It was very hard for my family as they didnt know what i had till i was at least three when an early intevention teacher from Northrocks school for deaf blind came out and saw me and said he knew i had CHARGE syndrome. This was farily new at the tiem so people were still learning.about it. I had many surgeries and therapies when i was little the therapies i can remember as learning to walk talk mum has told me how they would make me track soemthing by using bright colours.

Introduction

Imagine spending months and years not knowing what will happen next. Weather you live or die. You just take it one day at a time and hope for the best. Now imagine Not seeing very well or hearing at all . Im Ellen Howe and i have Charge syndrome and this is the stroy of my life

aknklogements

over time this will build up but here is a start

Their are so many people in my life that have been important for me it is hard to name them all but first id like to than my wonderful mum and dad for all the support that they have given me through out my life. My grandparents but msotly mums parents for their love and encouragement they have allways given me. My aunty and uncles and cousins for the endless love and support they have allwasy provided. Rob last my first ever teacher and the one to diagnose me with CHARGE SYNDROME for the great wrok he did when i was little.All my drs at Campedown Childrens Hosptial especialy Hugh Martin Paul Hutchins and all the nruses to. All the drs and nurses at Sydney Childrens Hosptial expecialy Caral trudgett and Kara Munro two great nruses that were very instrumental in my care Clare Cunningcam my paeditrition Susan adams my surgeon and allm the other drs and nruses that were involved Kate Steinbeck my adult endocronoligst for only five years for her great wrok with my oesteoprosis My new endocronoligst who has taken me on. Vic Duncoombe my new gastro dr David Lowenger my ent and all the other drs nruses and professionals that have played a role in my life. The northcott soc8iety Beth Heng my mannager at cpp the wonderful carers there The recreation team All my firends especialy Sev Laura for the idea Shirl All my carers espeicaly Aulie Ruth and many many others All the families i met through hosptial Marg and her angel mel Steph and her fam Sam Farr and her fam and so many others and my wonderful charge families through the list and of course those i have met YOU ARE ALL THE BEST and last but not least any one who has been in my life the past 25 years i couldnt of done it with out you.

reason for a new blog

Well first id liek to say my reason for a new blog one of my good firneds has said i should write an autobiography and i like the idea and i will over time write one but i thought here would b a good place i plan to write ideas and throughs and stuff ive been through in autobiography form then publish it