Known medical status (general executive summary for medical professionals)

Eyes:
Right eye:

• essentially normal
• small inferior coloboma
• vision seems to be normal for age from this eye
  

Left eye:

• microphthalmic
• extensive posterior polar coloboma
  
• posterior staphyloma
• excavated morning glory type disc
• all professionals say no useful vision from this eye but recent patching (27/9/2007) shows that he can distinguish objects at least as small as peas. 1/6/2008 he can walk with his right eye patched. 31/7/2008 vision improved in left eye, receives peripheral vision from left eye even with no occlusion of right eye.
  

Cranial Nerves:

• left facial palsy
• left optic nerve hypoplasia
• vestibulocochlea nerve malformations
• Uncoordinated swallow resulting in frequent aspirations (he has a good clearing cough though)
  

Heart:

• Small ASD (has also been described as a patent foramen ovale by different cardiologist)
• Aberrant right subclavian artery
  

Growth and development:

• fed by NGT from 4/12/2006 till 9/7/2007 because he would not put on weight fast enough.
  
• development slightly delayed, receives early intervention
• Poor swallow also means that he is unable to swallow anything lumpier than a purée without coughing and gagging. January 2009, has started to cope with bread and soft fruits. Currently main nutrition comes from Nutrini and purées (fortified with Paediasure).
  

Ears:

• Bilateral vestibular malformations; "only 1 hypoplastic semi-circular canal is identified". Walking is preferred mode of travel at 26 months.
  
• Bilateral grommets inserted to deal with chronic ear infection. These extruded around May 2008.
  
• Bilateral hearing aids to address hearing loss
  

Right ear:

• characteristic CHARGE external right ear
• moderate (60db) hearing loss in right ear
  

Left ear:

• severe (90db-100db) hearing loss
• vestibulocochlea nerve malformations

Airway:

• experiences frequent obstructive sleep apnoea has CPAP when sleeping to overcome this (pressure: 8-9). September 2008, post adenotonsilectomy, reduced CPAP to pressure 4.0. November 2008 sleep study in Monash recommends CPAP to be set to 5.0.
  
• aspirations are common while drinking ("significant gastro-oesophageal reflux" and "excessive pharyngeal milk and secretion residue")
• His laryngomalacia has not been noted for some time now. Laryngomalacia noted during adenotonsilectomy 4/7/2008.
  
• Mucus and food that he has recently eaten frequently runs from his nose.
  

Hospitalisations:

• 20/11/2008-21/11/2008: Sleep study in Monash
  
• 3/7/2008-6/7/2008: adenotonsilectomy
  
• 16/6/2008-20/6/2008: admitted to hospital for high temperatures with unknown reason.
• 8/5/2008-10/5/2008: admitted to hospital with pneumonia, suspected viral, temperature peaked over 40.
  
• 11/2/2008-13/2/2008: brought into hospital because of concern about possible dehydration; admitted to hospital with pneumonia.
  
• 12/10/2007-13/10/2007: admitted to hospital because of very large tonsil airway obstruction concerns.
  
• 22/6/2007-25/6/2007: admitted to hospital for upper respiratory tract infection. High temperature was noted on 12/6/2007 but not hospitalised at that time as Raphael appeared to recover.
• 1/6/2007-3/6/2007: admitted to hospital for bronchiolitis (upper respiratory tract infection).
• 4/5/2007-19/5/2007: admitted to hospital for possible aspiration pneumonia and CPAP fitting and training.
• 17/4/2007-19/4/2007: CT scan, grommet insertions, ABR test and eye pressure test under general anaesthetic. Good result from anaesthesia.
  
• 25/3/2007-27/3/2007: hospitalised for two night sleep study. Study showed frequent and severe blood oxygen desaturations.
• 21/3/2007-24/3/2007: admitted to hospital for possible aspiration pneumonia.
• 28/2/2007-1/3/2007: admitted to hospital for possible aspiration pneumonia.
• 18/12/2006-19/12/2006: admitted to day surgery for MRI scan. Reacted poorly to anaesthetic and hospitalised for one night (post intubation stridor).
• 4/12/2006-8/12/2006: hospitalised for NGT placement and training.
• 18/3/2006: Born in Calvary hospital. Normal full term delivery.