Raphael in CHARGE
Saturday, 30 June 2007
New mould
We received a new hearing aid mould in the mail yesterday and this has fixed the squealing problems with his left ear. Finally we have squeal free hearing aids; at least for the moment.
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New mould
Paediatrician
Cruising
Oh no, high temperature again
Free again
Nearly escaped from hospital
DEM
Back to hospital
Disability Services
No alarms last night
Intensivist followup
Early learning
Hearing aid adjustments
Development observations
Incidental trip to the ENT
Higher temperature
Bronchiolitis
Stupid machines!
Coming surgery
One appointment becomes four
Radio Interview
More notes on development
Ophthalmologist 2nd opinion
Hearing aid mould modifications
Out of hospital
In hospital again
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Education Professionals
Deaf/Blind teacher [RIDBC]
Gross motor skills teacher [gymbaroo]
Hearing consultant
Occupational therapist [ELT]
Physiotherapist [ELT] (x2)
Speech pathologist [ELT] (x2)
Teacher [ELT] (x3)
Teacher of the deaf [ELT] (x3)
Vision consultant [ELT]
Medical Professionals
Audiologist [RHH & Aus Hearing]
Dentist
Dietician (x2)
Ear Nose and Throat Doctor (ENT) (x3)
Endocrinologist
General Practitioner
Geneticist
Intensivist (x2) [RHH]
Occupational therapist [CHC]
Ophthalmologist (eye surgeon) (x3)
Orthoptist [RHH & Hobart Eye Surgeons]
Osteopath
Paediatric Anaesthetist (x2)
Paediatric Cardiologist
Paediatric home care nurse (x2) [RHH]
Paediatric Surgeon
Paediatrician (x3)
Physiotherapist [CHC]
Social worker [CHC]
Speech Pathologist [RHH (x2) & CHC & Speech Pathology Tasmania (x2)]
CHARGE Specific Websites
CHARGE Syndrome Association of Australasia
CHARGE Syndrome Foundation (USA)
CHARGE Family Support Group (UK)
CHARGE Syndrome Canada
German CHARGE Syndrome Forum
German CHARGE Syndrome Forum (google translated)
Australian Deaf/Blind services
Able Australia
Association for Children with a Diability (there is a hobart branch in Bathurst street)
Auslan (Australian Sign Language)
Australian Hearing
Bilby Publishing and Consulting (Auslan resources)
Deaf Children Australia
Deafness Resources Australia
Early Learing Tasmania (Department of Education)
Royal institute for deaf and blind children
TasDeaf - Tasmanian Deaf Society
Other peoples personal CHARGE sites
http://begasfamily.blogspot.com/
http://benrusso.blogspot.com/
http://cameronandrew.blogspot.com/
http://cameronwoweeandrew.blogspot.com/
http://cedielynn.blogspot.com/
http://chargesyndrome.blogspot.com/
http://dylanupdate.blogspot.com/
http://ellencharger.blogspot.com/
http://evanichole.blogspot.com/
http://evanstorrs.blogspot.com/
http://kauffmanlak.blogspot.com/
http://littlemissevie.blogspot.com/
http://maxupdate.blogspot.com/
http://mightymaxupdate.blogspot.com/
http://mkweindorf.blogspot.com/
http://superjack916.blogspot.com/
http://www.caringbridge.org/visit/tateyoung
http://www.lukejosephsnyder.blogspot.com/
http://www.twochargekids.com/
Other Links
Gymbaroo Tasmania (Sandy Bay)
Gymbaroo
OMIM database entry on CHARGE syndrome
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