Raphael in CHARGE
Friday, 18 January 2008
ENT
Our long ENT consultation to day focused on the Adenotonsilectomy and timing for the surgery given that our ENT will be away for a while shortly. We also discussed his hearing loss and further tests.
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Walking, wow!
Home care nurse project review
Injection and bloods at PACU
Head nodding and shaking
ENT
New signing skills
Paediatrician
First optometrist visit
New communication skills
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We lost a hearing aid
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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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