Saturday, 13 October 2007


Raphael was fine last night and he was discharged this morning. We took him home and will go back later in the day to pick up his prescription of Amoxycillin and Prednisolone.

Friday, 12 October 2007

Endocrinologist, dietician, paediatrician and hospitalisation

Raphael had his first endocrinologist appointment today. There were no surprises, but it is good for us to hear from the specialist. We will have a thyroid blood test at some time but this is not urgent.

While we were waiting for the the endocrinologist we managed to see Raphael's dietician and we were able to adjust his feeding script that we receive from the hospital to reduce the amount of Nutrini and increase the amount of solids fortification (PediaSure).

Raphael had lots of coughing yesterday afternoon so while we were in the clinic we also asked to see a paediatrician to just check his lungs and make sure that he was ok. He had a temperature of 40.9c! He didn't seem to be that sick to look at him but apparently he was cooking inside.

The paediatric registrar had a look at him and his lungs sounded clear, which is good, but his tonsils were really swollen. Any other child would have been sent home but because he is complicated the registrar phoned Raphael's regular paediatrician and when she came in to have a look at him, she ordered him to the ward for the night. His tonsils were so swollen that she was concerned that may exacerbate his sleep apnoea and so wanted him to be constantly monitored overnight.

He was written a script for Penicillin (to treat any possible bacterial tonsillitis infection) and Prednisolone (to reduce the swelling of his tonsils). Of all the drugs in the world I would have thought that penicillin was probably the most well known, well maybe apart from Viagra. But the hospital didn't have any Penicillin. Isn't that kind of like the cheese shop sketch? Oh well the doctors said that Amoxycillin would be fine in this instance and so he was given that instead.

Organisations that we have approached for support and/or concessions

(originally compiled: 24/5/2007, added to: 8/8/2007 and 12/10/2007)

If having a disabled child wasn't enough work for you, then trying to find support and services to help your child adds to that load.

Initially it was hard to find any organisations that provide support because we didn't have a starting point. Then near the end of our journey of searching for support we came across an organisation that provided a large list of support organisations. It took Annie days to go through the list to try to decide which ones she would focus on calling. It then took days for each of these organisations to assess whether we qualified for the support that they would provide. We still haven't contacted all of the organisations yet and I think that we are still waiting to hear back from some of them that started their assessment of Raphael weeks ago.

Here is the list of organisations that we are utilising services and/or receiving concessions from.

National and international services:
  • Australasian Charge Syndrome Association of Australasia. I have recently become a director of this organisation. The dedicated volunteers that work for it, organise events for awareness, fund-raising, conferences, and activities that can enrich the lives of people/children with CHARGE syndrome. While not wealthy, this organisation finds a way to maintain free membership for CHARGE affected individuals (and parents) while even providing some small financial assistance for its members in certain circumstances. Contact details for your local representatives can be found
  • Association for Children with a Disability. The website seems to be primarily for the Victorian branch but there is a Tasmanian branch and a Hobart office in Bathurst Street. I am sure that I have not fully realised the benefits that this organisation has to offer but the one thing that we have used from them was their fantastic list of service organisations. It is worth contacting them to obtain this publication called "Through the Maze - A guide through the maze of services for parents and children with a disability".
  • Australian Hearing. Australian hearing is a national government service that provided the hearing aids that Raphael is using. These devices cost thousands of dollars so I am very happy that we get them for free. Look for your local branch here:
  • Centrelink. CHARGE syndrome automatically qualifies the carer of that person to receive a carers allowance from the Australian government. If the person in question has a disability severe enough and the carer's income is low enough then they may also qualify to receive carers payment. I have found that dealing with this organisation is a significant challenge. One tip that I have is if you don't like the answer that you are given when you call them, then call them again another day and ask the same question to see if you get a new answer that you like better. Keep trying this until you get an answer you like. The financial assistance that they provide is fabulous. If you qualify for Carer's Payment then you also qualify for a concession card.
  • RIDBC (Royal Institute for Deaf and Blind Children). For us this service has taken a teacher consulting role with experts in deaf and blind children available to give advice for Raphael's development. They also send us toys to borrow that are tailored to get Raphael's interest and extend his development. The teaching/consultation sessions are done via teleconference at Australian Hearings Hobart campus. RIDBC's contact details can be found
  • Gymbaroo. This is a privately run pay-for-service activity that is like a playgroup with specific activities and equipment designed to stimulate a child's development. There is a national website here:
  • The Companion Card programme. To quote their website: "The Companion Card allows people with a profound disability, who require attendant care for the rest of their lives, to participate in community activities and events without discrimination. Companion Cards can be presented at participating organisations where cardholders will not be required to pay an admission fee for their companion who is providing attendant care." Unfortunately not all states and territories participate in this programme at the moment. Only Victoria, Western Australia and Tasmania currently issue and honor the card.
Tasmanian Services:
  • Department of Infrastructure, Energy and Resources Transport Division. This Tasmanian government department is the managing body for disability parking permits. We have found that the disability parking permit has been very helpful with regards to parking near the hospital when Raphael needs to be brought in multiple times per week. They also have a reduced fee for car registration and MAIB (Motor Accidents Insurance Board) premiums for concession card holders.
  • Early Learning Tasmania. Early Learning is part of the Tasmanian Department of Education and provides an amazing service for children below school age. They have an excellent array of services from therapies to consultations with specialist teachers and all with excellent flexibility with regards to the time that they provide the service and the location. Incidentally they have had a name change ad are now called "Early Childhood Intervention Service".
  • Calvary Health Care Children's Therapy Services. This is an outsourced service from the Tasmanian health department. They provide physiotherapy, occupational therapy, and speech therapy for Raphael. This service is quite different from the Early Learning service in that Calvary is geared up from a health and physical development perspective where as Early Learning has an education focus. There is some peculiar rule that means that we are not supposed to utilise both services at the same time so we are going to have to choose one of them over the other. The only explanation that I can think of for this strange rule is that the governing bureaucrats must have little idea of what is actually happening in the therapy services for children.
  • Home Care (home and community care - HACC). HACC is jointly funded by federal and state governments. Here is the website for federal information. We get domestic cleaning assistance from here which frees us up to spend more time with Raphael.
  • Community Based Support (south). This organisation receives funding from HACC. We receive limited respite assistance from here because this organisation is low on funding, but it has been very good for Annie. We have also utilised a gardening and spring cleaning service from this organisation, which was well needed, because cleaning was one of the first things to be dropped with Raphael's time demands.
  • Disability Services. This is part of the Tasmania's government health department. Raphael has been accepted as a client of Disability Services and they have been instrumental in organising ongoing respite. We are also in the process of applying for a home improvement to help Raphael once he starts to walk (a rail for our front steps)
  • Early Support for Parents. This is a volunteer home visiting service that helps "anyone with the care and responsibility for children, especially families experiencing stress". They don't seem to have a web presence but they have some contact details here:
  • Aurora Energy. Aurora is the electricity service provider Tasmania. Holders on a concession card receive a power bill concession if you apply for it. They also provide a concession for people who use certain types of medical equipment in their home.
  • Department of Treasury and Finance. This Tasmanian government department claims to provide land tax exemptions to concession card holders. We have not realised this benefit yet becuase we did not hold the concession card at the time that our last land tax was payable.
  • Royal Hobart Hospital (RHH). Raphael was born in Calvary hospital which actually made it a little difficult with regards to leveraging some of the RHH outpatient services. Fortunately our Paediatrician pulled some strings and made it possible for Raphael to use the services from RHH. The professional staff (consultants, registrars, therapists and nurses) devote an amazing level of care and time for Raphael and us.
  • Hobart City Council. Our local city council provides parking concessions in the city car parks for holders of concession cards. This has saved us a lot of money because the Argyle Street car park is the only practical parking solution for when we go to the Royal Hobart Hospital. HCC also give property rates concessions to concession card holders.
I suspect there are more services that we receive that I have forgotten about while making this list.

Thursday, 11 October 2007

First dentist visit

Raphael had his first dentist visit today. They talked about:
  • the possibility of brown adult teeth because of repeated high temperatures,
  • he has an obvious under-bite
  • seems to have a flat nose ares (possibly due to CPAP mask?)
  • any major dental work will probably have to be done under general anaesthetic because of the risks associated with his possible ASD (heart defect).
  • to reduce the chance of major dental work it will be a good idea to apply a protective layer over his teeth when he is older.
  • frequent visits (every 3 to 6 moths) will be beneficial to make sure that we catch any problems early and also to get Raphael comfortable at the dentist.

Wednesday, 10 October 2007

Successful applciation for companion card

Our previous application for a companion card for Raphael has been accepted and granted. We have an interim letter and we are just waiting on the official card to be printed and sent to us.


Monday, 8 October 2007

Paediatrician and travel help

We went through a good list of questions today with Raphael's paediatrician. Just like me she is very happy with his weight gain and general appearance. Fortified feeding is still required but tube feeding is no longer being considered (which is great news). I believe that this marks the end of the "no NGT trial" and that we can call it an outstanding success.

We are giving ourselves a great big pat on the back for all the hard work that we have done but also not forgetting to praise God for this amazing turn around that no-one predicted.

After the paediatrician appointment we went to see the guy in the hospital who manages the travel support for assisting us to travel to Sydney. We were careful to clearly explain the travel and accomodation support that we will receive from other places because we don't want to "double dip". The hospital is going to be very helpful for us financially as they are willing to cover some of our taxi trips which looked like they were going to be more expensive than our air tickets.

Final weekly weighing (10.5kg)

Raphael has been doing so well that I have decided that this will be his last weekly weighing. He weighed 10.5kg today which is no increase from last week but he has been sick and his weight is still excellent so I am not worried about this.

Thursday, 4 October 2007

Mini gastro bug

Raphael had a small vomiting session this evening which looks likes he has caught the gastro bug that has been progressing though our family. My wife is the last remaining non-vomiter in the family but she is complaining of not feeling very well either so I don't know if she will last the night without a trip on the porcelain bus.

The good news is that it seems to only last one or two days so I think that he will be over it soon.

ENT followup

We had a follow up with Raphael's ENT today. The grommets are still in and his ears are dry and without infection.

We discussed the possibility of repeating an ABR test (an objective hearing test) because the hearing in his left ear appears to have become worse since the grommets. We are not sure if this will proceed though because even if it does, there is nothing that can be done short of inserting cochlea implants. Raphael's left ear is still too good (at 90db loss) to warrant/risk a cochlea implant (usually reserved for 100db+ loss)

I wonder if his hearing will improve when the grommets extrude. The ENT doesn't let us record her consultations unfortunately so I can't remember precisely what she said. From memory I think that the ENT said that hearing loss incurred from ear surgery is not expected to return, but any such hearing loss, in grommets insertion cases, is rare and minimal (10db at most). At the moment I think that the ENT believes that the apparent huge drop in observed left ear function (40 to 90db loss) is actually the result of erroneous readings prior to the grommets insertion.

It is so hard to test Raphael's hearing because there is such a limited time when he is at his optimum (ie when he is not eating or sleeping/tired) and if that doesn't fit into the completely inflexible window that Australian hearing are able to schedule, then it is a battle to get any meaningful hearing testing out of him. We knew it was important for children to be able to hear from a young age, but even with our persistence, I believe that we have still not had all of the hearing tests that could be done to provide Raphael with the best chance of hearing. On one hand it is fabulous to see that our country provides these services for us, but on the other hand it is frustrating that it is not funded adequately to provide the services in the necessary timely manner.

Monday, 1 October 2007

I am so proud of his weight gain (10.5kg)

He now weighs 10.5kg which is a 70g increase in the last week!

You are doing well, keep on eating son.