Raphael in CHARGE
Sunday 27 May 2007
"The elephant is dancing"
Our code phrase to indicate that Raphael is awake
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Early learning - hearing consultation
Help from a home care nurse
Another tube out
"The elephant is dancing"
Oxygen probe showing poor saturation
Healing service
Another new way to extract an NGT
Last night CPAP
Raphael's bed setup
CPAP and other alarms
Choosing to sit
New hearing aid moulds
Next operation scheduled for 14 June 2007
First night at home with CPAP
Finally escaped from hospital
Paediatric cardiologist
Post grommets ENT visit
Yesterday, what a day!
Five teeth
Pulling to stand
An informative day in the hospital
Still in hospital
First attempts with CPAP
Still in hospital
Another day in hospital
Next day in hospital
Pneumonia, third time
Marathon paediatrician effort
Early Learning session today
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April
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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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