christmas is nearly here you know it when

you know its christmas when we finaly get the tree in the loungroom andyou see lights in the streets this years going to b the same as usual atgrandmas doing all the usual sutff all the usual people lol new years eve we aredown with mums cousin sues holiday house in milton in the country we will go on the sat or sunday come back new years day the tues

a me update

well things have been prety busy lately coz mums lovely firend alex is now living with us yay and shes a busy kinda woman cris has she got a calenda yet LOL it could b the same question as has she got a house car dog yet and the answer is NO lol well weve been swimming lots and having loads of fun next week ived got my endo appt to check out on stuff and i need the back xray coz she wants to see where all my old fractures and stuf have been so will do that this week i still havent seen my tummy dr ad have been refluxing lots as the weather gets warmer but keep up with my water and my pump dads been realy bad latly and i hate his yelling and mum lets him do it when people r there i hate it hope all my american charge people and readers have great thanksgiving

wow christmas is coming sooooo quick

this wonderful lady is an old nurse that used to look after me and is a great freind found her on facebook she was one of those people who just did everything for me love my cuddly carla

pics

u no ive never really put pics up here so thought i better

a virus or wat

just thought id update on how im doin ive had this cough blocked nose all winter now i do have quite sever reflux and havent seen my tummy dr since last christmas ive been on two courses of antibiotics and still got it am going to c theendodr in a month so we will ask her what she thinks in charge reflux is quite common and so is swallowing probs very complicated but it is the case

smiling

hey just a bit of a hey mums friend comes exactly a month tomorrwo lol yay shes moving here form america for ever yay and shes buying the charge calenda with me im august so u have to to lol

a picture

this is a mouse pad i got from the american charge foundation we designed a sign on the list serve and this is the sign its great

keep sweet reuban and fam in ur thoughts

hey everyone gosh im posting a bit today well i want everyone to think about going and reading reubans blog and keeping him in ur thoughts http://reubenjackdodd.blogspot.com/ his mum writes so perfectly they r acutaly from the uk but live in america catherine had reuban via ivf and for soem reason not coz of that i dotn think he developed charge he has been through alot and his fam r so wonderful and they write so great and i love them all sooooo much so read them and b captivated by caths lovely writing i think she writes like yuka lol beautiful wiman well they r up for big surgery thurs hang in there lol

has caleb touched u

He has touched me and all the charge fams alike his family is looking for help with medical bills. They had tried to get donation but most companies do not donate to indiviuals only other companies or organizations.One thing Sarah is asking is if Caleb touched your heart to write a letter about them to Oprah, I .Here is what Sarah wrote:I looked further into the Oprah suggestion and there is a list of ideas for upcoming shows. It has been suggested, that it may be more effective if you can find an upcoming show that may apply to your situation. One is 'Has a serious illness touched your life'. I have included the link (http://www2.oprah.com/tows/intheworks/tows_works_main.jhtml) for anyone that wants to write the show on that topic. If you scroll down the page you will see the title and click on that and then there will be a form. to be filled out.So please write something to Oprah and help the family just letting them know how much you love Caleb and how he touched your heart. ps i edidited it coz copied it form cris and it had wat they had so now better

cris and evas cafe press site

http://www.cafepress.com/CHARGEingStrong chrsitmas is coming soon need any ideas and feel like getting more people to no bout charge at the same time where here is the perfect way cris evas mum is slling items on cafe press go c them and buy soem specvialy the calendas for next year they r great theres even some things with quotes boutdisabilites hugs ellen

cris and evas cafe press site

thanks cris

hey everyone if u go c my blog now ull c a new look thats coz i was talking to cris about how to have my chargers on the sides and she did it for me and a background so scrool down and theres all my friends thanks cris and eva love ya and cant wait to fly over in 09

thanks cris

hey everyone if u go c my blog now ull c a new look thats coz i was talking to cris about how to have my chargers on the sides and she did it for me and a background so scrool down and theres all my friends thanks cris and eva love ya and cant wait to fly over in 09

a new charger joins blog

id like to welcome amieli anhttp://ameliemchan.blogspot.com/d les into the blog world amelie had many probs and is doing wel her mum les is learning to b a midwife and is a good friend of mine i plan to visit her when davo moves to england two years lol ive a few charge fams over there i plan to meet shes just one of them

wonderful news from yuka

our little charge firend on the list whos a blogger has come through heat surgery wonderfuly thanks yuka for the update when it comes to chargers u will often find that the news f success is wonderful

prayers needed for some chargers

we need pray for caleb hes having probs still and is on tpn thats giving him some probs also reuban a new little charger is having a hard time withdrs they r being very negative bout stuff his condition is very simila to max in charge this often happens but then we get drs telling us there is no hope and we find there is

no pic here

am at my carers house was gonna put a pic of me but shes got none she had them they got deleated not b her or me

a new charge blog i found just tonite

http://mkweindorf.blogspot.com/ here is a new charge blog i found just now everyone read this and hope we get mroe updates bout lucas and his fam

bored

http://evanichole.blogspot.com everyone visit to c evas new site hmmmmmmmmm well some of us chargers r gonna b writing a book any oen interested email krista_amy@yahoo.ca for details they r two chargers from the list who r adults liek me and want to get the word otu so come on all the people reading my blog get started on this book they r welcoming stories form parents about their chargers pics and more cant wait to read this book speicvlay after today when i wa having a typical charge hypo and well no one but the carers at northcott who acutlay has had me at resptie during another hypo LOL rosas lucky one huh well they were the only oen who really knew the tohers didnt lol i watn a book to hand out to everyone LOL my hypos gone for now i wasnt even refluxing it jsut happens ummmmmmmmmm could it of been a late effect of tat red cordial i had yesterday well who nos im just wierd

eva

pls pray for eva max and caleb all sweet chargers having hard time at the moment caleb has no imune system needing a thymus eva and max got the dredded bug form daycare at the conf love u all

my old early intervention theacher

me and rob at my 21st forever friends of fam
us with my old carer also forever fam friends

my old ei teacher famous in the charge world and now a great fam friend is sick and didnt go to the charge conf in america i am hoping its not his heartxo hes had a bad one he was the one who diagnosed my syndrome he came in said he had others like me and he believe i had charge and he was so right 22 years later rob is still the best friend there is and he is a great person when he taught me he didnt just help me he helped my fam he made sure we all ddi stuff as a fam when he was there i have pics of him with me and my brother hes done stuff with both of us it is so important that the hole family knows whats going on and he made sure that was the case he would be with me while mum and dad went out he organised stuff with other chargers he taught me to talk and to speak and to be the person i am he made sure the drs did what they should of been doing and all in charge land love him and will miss him if anything happens to him

congrats eva on walking in charge the littlest milestone that to a normal fam to us all is like congquerying everst eva my litle charge friend has conquered everest shes started to walk with her walke with the sencory stuff in the ears absence of this can delay a chargers functions soemtimes for life soemtimes years and sometimes months it can be hard on the families as they struggle to find what is best for their charger but its a struggle all of us will face

i no i no i needd to get off hear but i am gonna put a pic of something a pic of eva lol my fave charge or one of them

a sydney charger

here is a charger who lives round the corner from mehttp://begasfamily.blogspot.com/ we both got same ent and i think have had same tummy surgeons and maybe heart surgeon to well theres only bout two heart surgeon in the kids hosp so we have of had the same i had heart surger for a central line well anyway this charger lives in coogee just liek her and we met her mum at a fundraiser thing now i talk to her on the list and read the blog often

the amazing kenedy and her mummy lisa

http://chargesyndrome.blogspot.com/ this a blog by lisa mum of kenedy lisa is the moderator of our charge group on ;yahoo she is a wonderful mother whos dream is to write the ultimite charge syndrome phd her daughter kk has charge and is truly amazing nine year old her mum ahs got this little blog for her and shes also got a site all bout charge with links to toehr stuff lisa is one of the best we love you lisa we know you never started the group casey did that but still THE BEST lol

me and charge

well i thought id tell u my charge i was born 28th june 85 wtih a cleft lip palate reflux hearing loss vsison probs and much nore my mum and dad didnt know what i had they tried to feed me and i would vomit up so they put me in the hosp where they put a feeding gtube and jstoma and a fundo wich didnt work they were told i had charge syndrome a conditon wich was then very rare but is becoming more common www.chargesyndroem.org it stands for coanal artriesia common but doesnt effect me cleft lip palate colabomas wich i have heart wich i dotn have except abnomal veings clot easily growth retardation i have this and have had no hormones hearing loss and ear anomilies i have small eustation tubes no simi circula canals reflux wich i have and now 22 years later as i will b on thurs i am doing very wel no jstoma eating little bit by moth and am working and attending a program for people like me being an adult charger is hard but its great to

eva a butterfly

on the charge list we find many chargers and fam who r just amazing antoerh fam ilove is eva and her mum cris and fam eva has charge and has many probs but is improving everyday her mum criss and her two brothers r the most caring fam you could ever meet they do their best to raise funds to e\help charge and other organsiations including marchof dimes http://www.babysites.com/sites/crystalm1476/ to read evas history click on the link and read all her journal history she is one amazing little girl we all love our eva

cedie and angel charger

over the next few days ill write things bout my charge friends and u can view their lives thelife i want to talk bout now is a little girl who has recieved her wings but fought bravely cedie loving angel to mummy and daddy jen and cris and sis to dylan was a great little charger now she is an angel jen writes her experiences of grief with cedie and things she is doing http://cedielynn.blogspot.com/ it is coming to what would of been her second birthday but she is an angel pls keep her fam in our thoughts for peace and happiness jen also has her own fam blog if you scroll down and read

MIGHTY MAX and his super mummy AMY i love u both

one day two years ago a wonderful mother had a great son called max with charge she came to the list on yahoo groups and talked to us started up a blog and now http://mightymaxupdate.blogspot.com/ tow years later this is the result a beautiful little charger who is two max is a demo of how chargers fight charge is very complex many will die but max was one of those who fought on with his mummy by his side even with a daddy who was a idiot and cared no cent bout his little boy max came through all this and i a thriving two year old and one who i admire greatly anyone who is told charge is a no hoper go read max and you will see they r wrong GO MAX we love u

charge

i have charge syndrome it is very complex but very interesing each leter stands for something i am a charger with many probs