- Patching 30 minutes to 1 hour about three days per week. We have been letting this slip lately and it has been more like once a week.
Poor hearing
- Bilateral Hearing aids during all waking hours.
- hearing tests every three to six months.
- regular ENT appointments every three to six months.
Poor speech
- Bilateral Hearing aids on during all waking hours.
- Speech pathology appointments every three weeks.
- teacher of the deaf appointment once a week.
- learning to listen playgroup once a week.
- RIDBC video conference once a week.
- learning to sign Auslan by:
- Attending signing playgroup once per week.
- studying ipod signing teaching system borrowed from RIDBC.
- In February we are organising a deaf person to come to our house for maybe an hour a week to enhance our Auslan skills.
- using http://www.auslan.org.au/.
Facial palsy
- we have tried osteopathy and acupuncture point massage but neither of these has made any difference.
- Currently we are not doing anything to overcome this.
Antisocial behaviour
- Now that we have the vomiting and aspiration under control most of the time we are starting to put firm boundaries in place for Raphael. He is no longer in charge of everything.
Poor swallow, aspirating fluids and choking on lumpy foods
- Main food is pureed fruit, custard, yoghurt, and pureed pumpkin
- gradually trying to give Raphael different textures, so far he can eat soft crumbly cake in small amounts.
Slowly developing gross motor skills
- Early intervention playgroup once per week.
- Auslan playgroup once per week.
- Added a double rail to our front steps so that Raphael can hold it while climbing and descending the steps.
- Lots of trips to the local park and playground equipment.
Sleep Apnoea
- Sleep testing about once a year
- CPAP while he sleeps overnight with an oximiter.
Heart defect
- Echo cardiographs occasionally to ensure stability.
- No current action.
Funny looking right ear
- Nothing.
- It would have been possible to mould his ear within the first few weeks of life without surgery, but unfortunatelly we did not know about the ways of doing this then.
Aspirations
- It has been recommended that thickening fluids that he drinks would be a good idea to reduce the chance of aspirating fluids.
- We are ignoring this as it is just too much trouble along with everything else we have to do.
Vomiting
- When he has periods of vomiting we limit his fluid intake and feed him10ml of water at a time every 10 minutes to try to keep his fluids up.
- We have to make sure that there are no drinks sitting around for him to find or he will guzzle them and then vomit.
Cognitive skills
- Formally testing him yearly to make sure that we are addressing any shortcomings.
- Attending early intervention once a week.
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