First Visit to paediatrician after CHARGE diagnosis

Thank goodness we have finally had a chance to speak to our paediatrician again. We had a couple of pages of questions to ask her but we hardly got through any of them even though we spent over an hour with her.

We covered so much material I don't know where to start, fortunately she allowed us to record the consultation so I think Annie and I will be listening to it again. Dealing with the public health system administration can be very difficult but when we bring any of these difficulties to her she always manages to get them all sorted quick-smart. It has taken us ages to half organise Grommets without her (she was on holidays), but now she is back I am confident that it will happen within the next couple of weeks in addition to a stack of other things that we talked about.

After I have had a chance to go through everything that we talked about I will post another update on what is going to happen.

One definitely good piece of news is that Raphael has finally hit 8kg. All young Australian parents will probably recognise the significance of that... He has finally reached the recommended weight for turning his car seat around.

(edited on 9/3/2007; added topics of consultation):

• Up-comming CT scan
• Disability allowance
• Infatrini Feeding volumes
• Solids feeding and vomiting
• Placement of NGT tubes and self/parent placement possibility
  
• Bowel movements and urine
• Renal ultrasound
• CHARGE manual
• CHARGE Support meetings
• Bad hearing and vocalisations
• Gross motor and Fine motor skills
• Facial eczema from NGT tape
• Feelings about the diagnosis of CHARGE
• Parent sleep and worry about NGT issues
• External observation of kidneys and testes
• Comments on the "Overview of CHARGE Syndrome for Physicians"
• Swallowing and airway problems
• Aspiration pneumonia
• Reflux
• Heart Disease
• Developmental delays and early intervention
• Ear problems/Balance problems
• Eye problems
  
• Sense of smell
• Failure to thrive
• DiGeorge Sequence
• Pain threshold
• Anaesthesia
• Reports/letters that we don't have a copy of
• Appointment with anaesthetist
• How older siblings are coping with less time from parents
• Audo brainstem response test under general anaesthetic after grommets
• Paediatric ophthalmologists
  
• Paediatric cardiologists
• Recorded NGT problems with CHARGE babies
• PEG with fundoplication