colour legend:
- general notes
- doctor visits
- medical test results
- early intervention / therapy
- noted development milestones
- General hospitalisation
- Surgery
- 18/3/2006 - Raphael Bartlett born at term (on due date).
- birth weight 4.055kg.
- Initial anomalies noted: wonky ear, facial palsy, slightly low set ears.
- Gurgley breathing.
- Failed to reach birth weight by the time he left hospital (3.78kg).
- 11/5/2006 - first doctor appointments concerning weight gain (paediatrician and ENT).
- ENT noted laryngomalacia and mucus pooling at the back of his throat.
- 11/5/2006 first doctor appointments concerning weight gain (paediatrician and ENT).
- 11/5/2006 - first barium swallow showed significant aspiration and oesophageal reflux and that his oesophagus may be being slightly squeezed by an artery.
- 26/5/2006 - first echo cardiograph reported as showing a small ASD (Atrial Septal Defect) but other cardiologists since have also referred to it as a PFO (Patent Foramen Ovale).
- May - December 2006 - various attempts tried for oral feeding including:
- Using herbs to stimulate milk production.
- Expressing milk and adding HMF (Human Milk Fortifier).
- Using formula at a controlled increased concentration.
- Finally tried using Infantrini (high energy premixed formula).
- Higher intake was achieved but Raphael started vomiting large amounts undoing all the good work that we were doing.
- 31/5/2006 - started osteopathy for Raphael's facial palsy.
- September 2006 - first opthalmologist visit. He noted major left eye probelms rendering it practically useless and also commented on monir right eye problems.
- 1/9/2006 - Raphael rolled over for the first time (all the way).
- 19/9/2006 - Raphael takes solids for first time. Paediasure (complete feed supplement) added to fortify. Consumption of only liquids and pureed foods continue to 1/11/2008 but still remain the staple to date (6/1/2009).
- 24/10/2006 - first audiologist appointment reveals some hearing loss. Further test requirted to determine extent.
- 30/10/2006 - started Early intervention at Early Learning Tasmania.
- 10/11/2006 - Hearing test (ABR) revealed 40db loss in left ear and 50db loss in right ear
- 24/11/2006 - another echo cardiograph still shows the hole in his atrial septum.
- 28/11/2006 - another type of barium swallow done and no fistula was found between the oesophagus and trachea.
- 8/12/2006 - Raphael has had an NGT (Naso-Gastric Tube) inserted in hospital which will be used to supplement his daytime oral feeding with overnight. This proved to be extremely effective.
- 18/12/2006 - MRI performed on head and upper chest. Cranail nerve anomalies were noted allong with a hypoplastic vestibular system rendering it useless. Reacted poorly to anaesthetic and hospitalised for one night (post intubation stridor).
- 20/12/2006 - consulted with geneticist who was still unsure what condition Raphael was experiencing. He suggested that some parts of Raphael's symptoms was similar to CHARGE syndrome but he did not beleive that is what Raphael had partly due to the asymitry of Raphael's problems.
- 11/1/2007 - Ophalmologist noted high right eye pressure, but still within normal limits
- 12/1/2007 - Geneticist now states that Raphael has CHARGE Syndrome
- 15/1/2007 - CT scan performed but movement has reduced its resolution significantly only showing fluid filled middle ear cavity.
- 1/2/2007 - Started learning and teaching Auslan to Raphael as language seems to be delayed.
- 13/2/2007 - Started to crawl backwards.
- 17/2/2007 - Raphael has started sitting unaided.
- 22/2/2007 - Started commando crawling.
- 23/2/2007 - Renal ultrasound showed no anomalies.
- 28/2/2007-1/3/2007: admitted to hospital for possible aspiration pneumonia.
- 5/3/2007 - Used first Auslan sign (hello).
- 11/3/2007 - used pincer grip.
- 15/3/2007 - kneeling for first time.
- 21/3/2007-24/3/2007: admitted to hospital for possible aspiration pneumonia.
- 26/3/2007 - Sleeping oxygen study shows severe obstructive sleep apnoea.
- 27/3/2007 - Crawling on hands and knees (classical crawl) for first time.
- 4/4/2007 - signing finished (appropriate usage of the sign).
- 4/4/2007 - moves from crawling to sitting comfortably.
- 18/4/2007 - General anaesthetic incorporating a number of procedures:
- CT scan gives no additional information apart from a possible cholestatoma in middle ear. ENT comments that this cannot be seen clinically and therefore it is probably just fluid buildup.
- Grommet insertion surgery.
- ABR test shows significant hearing reduction in left ear (down to 90db loss) after grommet insertion.
- eye pressure test shows normal pressure.
- 24/4/2007 - Hearing aids fitted for first time.
- 4/5/2007-19/5/2007: admitted to hospital for possible aspiration pneumonia and CPAP fitting and training.
- 9/5/2007 - commenced CPAP with intensivist in hospital.
- 1/6/2007-3/6/2007: admitted to hospital for bronchiolitis (upper respiratory tract infection).
- 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.
- 27/6/2007 - Cruised for first time (walking while holding onto a surface).
- 9/7/2007 - stopped NGT feeds for oral feeding trial (never went back to tube feeding). He was scheduled to have Fundoplication and Gastrostomy but he was sick when it was supposed to happen and the this successful oral feeding trial has made it unneccessary.
- 8/8/2007 - Parasomnias noticed. Started out with sleep sitting but went on to sleep standing and night-terrors. These eventually subsided by the middle of 2008 and appear to have completely gone by 2009.
- 21/8/2007 - Barium swallow video fluoroscopy test. Showed aspiration of thin fluids (such as milk) but no sign of reflux during the study (he vomited afterwards though).
- 15/9/2007 - makes the following sounds: "dya-dya-dya", "adaadaadaadaa", "aiyaiyaiya", "mama", "ba". this is notbale becuase he doesn't make any new sounds for over a year from here.
- 27/9/2007 - commenced occlusion thereapy by patching Raphael's right eye to try to stimulate the development of his left eye vision. We kind of talked the ophalmologist into giving us patching advice, he did not think that patcihng will help.
- 12/10/2007-13/10/2007: admitted to hospital because of very large tonsil airway obstruction concerns.
- 1/11/2007 - Second oppinions sought in Sydney from education specialists, therapists, paediatrician, ENT, opthalmologist, cardiologist, thorasic surgeon (sleep specialist). Only new recommendation is to have adenoids and tonsils removed.
- 30/1/2008 - taking first unaided walking steps.
- 11/2/2008-13/2/2008: brought into hospital because of concern about possible dehydration; admitted to hospital with pneumonia.
- 28/2/2008 - signs about 5 signs.
- 12/3/2008 - Nearly suffocated to death on vomit in CPAP.
- 28/3/2008 - confident walking with trolley.
- 7/4/2008 - walks confidently.
- 8/5/2008-10/5/2008: admitted to hospital with pneumonia, suspected viral, temperature peaked over 40.
- 16/6/2008-20/6/2008: admitted to hospital for high temperatures with unknown reason.
- 4/7/2008 - adenotonsilectomy performed in the hope that it would improve breathing at night.
- 31/7/2008 - ophalmologist acknowledges that patching has improved raphael's left eye and it now provides peripheral vision.
- 4/10/2008 - Australasian CHARGE Syndrome conference in Christchurch, New Zealand.
- 20/11/2008 - Sleep study in Monash showed that CPAP level should be set to 5.0.
- 13/12/2008 - eats chocolate cake without choking
- 15/1/2009 - third echo cardiograph still shows the hole in his atrial septum.
- 1/1/2009 - started to use two sign phrases (not just two gestures)
- 16/1/2009 - eats bread without choking
- 18/1/2009 - eats toast and a fresh apricot without choking
- 8/4/2009 - Jumped for the first time (both feet off the ground)
- 9/4/2009 - eats just about anything except fibrous meat and crunchy foods (like apple)
- 27/3/2009 - Renal ultrasound shows no issues
- 10/4/2009 - Sleeping oxygen study shows no more obstructive sleep apnoea
- 29/4/2009 - Sleep study in Monash showed that CPAP was no longer required
- 22/5/2009 - started at ABC learning childcare 1 day per week for socialisation
- 8/2/2010 - now able to make k sound can make dy sound sometimes
- 4/6/2010 - can make an s sound in specific circumstance "is"
- 13/8/2010 - made a "sh" sound for the first time but is unreliable in reproduction
- 13/8/2010 - started 2 half days at local kindergarten as a prekinder type of experience
- 1/9/2010 - Sleeping oxygen study confirms no more obstructive sleep apnoea
- 13/9/2010 - Renal ultrasound shows now issues
- 29/9/2010 - eats everything but occasionally has a bit of a cough
