Raphael in CHARGE
Sunday, 24 May 2009
An example home speech pathology session
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2011
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September
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My child has just been diagnosed with CHARGE syndr...
It has been a long time
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2010
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November
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Guess what Raphael did
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October
(1)
Australasian CHARGE Conference 2010
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September
(3)
Chronology of events that doctors are usually inte...
Summary of chronology summary
Oxymetry study
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August
(2)
New sound "Sh"
Local Primary School
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June
(1)
The new sound "s"
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May
(2)
Raphael in China 2
Raphael in China 1
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February
(2)
Raphael's colobomas
Practicing ...k and ...dy
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2009
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October
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Progress update
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July
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It has been a long time since the last post
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May
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An example home speech pathology session
First day at daycare
More sleep studies
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April
(3)
Simple Sleep Study
Questions people keep asking us (or should ask us)...
Jumping
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March
(2)
Auslan revision videos
Three years old and going strong
►
February
(1)
Squeeling Hearing Aids
►
January
(8)
Raphael's current issues and actions
A Hard weekend of Auslan
Known medical status (general executive summary fo...
Another echo cardiograph, how is his heart now
Vision research for occlusion and colobomas
Eats first M&M
Raphael can fly a kite
Signing and speaking progress
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2008
(58)
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December
(2)
No more warnings
Eats chocolate cake for the first time
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November
(2)
Melbourne Sleep Study
Raphael eats doughnut for first time
►
October
(1)
Back from the conference
►
September
(5)
Found it!
Got hearing aids
Raphael has a high temperature
Coughing
Broken hearing aid
►
August
(3)
Bath
What we have managed to do for Raphael
A couple more Doctor appointments
►
July
(3)
Not an ordinary eye examination
intensivist followup
Adenotonsilectomy
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June
(8)
Raphael is out of hospital again
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May
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April
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March
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February
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January
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2007
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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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