The rollercoaster adventures of parenting three kids, dealing with disability and mental health.

Monday, 17 November 2014

Breathing is so overrated

Some days, I just can't believe some of the things I hear.

Listen to this one.

A sweet friend of mine put in a request with NSW disability equipment Provider Enabe for a shower chair for her dear child. This requires a whole ream of paper, to be filled in by a qualified OT working for registered service provider.

The reply came that, yes, the chair was approved. However, the requested harness was denied as the tilt on chair would suffice to keep the child seated just fine. 

So the mother rang and asked the senior advisor to read out loud what OT had written as the reason for needing a harness.

"[Child] needs harness to keep their shoulders back to prevent chin and neck tilting forward which interrupts breathing "

I am pleased to be able to tell you all that my friend had a "fairly serious discussion" and a harness will be provided - and she even avoided the normal 21 day appeal process. 

But if "lack of breathing" is not a decent enough justification, you really gotta wonder what is???!!!! 

(And again. Why do we need qualified OTs to fill in all this paperwork if a bureaucrat overrides their professional advice ?!?!$

Tuesday, 11 November 2014


Paperwork to apply for funding under the incontinence scheme (for things such as nappies and catheters):

Because "pissing your pants and sitting in them is undignified" is not a good enough reason!

Back again

Here we are, back in hospital again. 

Four bottles of this life-saving stuff for Beaver. 

A day of rest at home tomorrow. 

And another four bottles on Thursday.

Monday, 20 October 2014

Virgin Australia

How do you take a 50kg wheelchair user to the toilet on a 4 hour Virgin Australia flight. You drag or carry them is how!

My father-in-law booked us (him and his wife plus the five of us) on a lovely and much needed break to Fiji. He still had some outstanding Virgin Australia tickets from the trip to Bali we missed out on when hubby broke his ankle last year. So Virgin Australia it was, Sydney to Nadi, and SoftiTel on Demerau, a resort style hotel close to the airport to minimize traveling, swimmers in the suitcase.

After our recent experience traveling to Alaska and Vancouver Island with two wheelies, we knew the ropes. Hubby rang both the hotel and the airline to check and double check they were aware and prepared for wheelchairs. Also, at the time of our booking (in the first half of this year) we had one child using a wheelchair, but now we have two, so best to notify everyone of this additional set of wheels.

Hubby rang Virgin Australia and started a complicated game of phone tag between Virgin Australia Holidays and Airlines. No one could quite work out whose responsibility our complicated request might be.  

Eventually someone with some sort of authority assured us that yes, we could take the wheelchairs to the door of the plane (thanks Kurt Fearnley!) and yes, there would be an aisle chair available. We requested and received seats close to the toilets and all of us would be seated together.

We headed off to Sydney Airport on Saturday (28/09/2014) for our four hour flight to Fiji (VA 183 from Sydney to Nadi). We headed off early because we have learned from experience that checking in five people, including two wheelchairs, takes ages. We don't mind too much, it's part and parcel of our situation, and we lighten the mood by joking about it with the poor check in person who drew the short straw and ended up with us.

We were able to take our wheelchairs to the door of the plane where I then carried BooBoo (8 years old and 20kg) to her seat (4th row) and one of those skinny aisle wheelchairs took Beaver (13 years old and 50kg) to his seat. For those wondering why I carry BooBoo - she cannot sit safely in the aile chairs the airlines provide and well, she’s still light enough.

Of course, we were not seated together. Our wonderful cabin crew took pity on our 11 year old and got another passenger to move. All good.

Except two hours into the flight I needed to take the oldest to the toilet. So I asked for the aisle chair. Our lovely flight attendant Lynska went red as a beetroot and explained to me that, eh, there wasn’t one. Never had been.

I was stunned.

So, how am I meant to change my son?

Eh. You could change him in his seat?

I bloody well will not. He is a 13 year old boy who has recently lost the use of his legs and became incontinent. I will NOT put him through the indignity of changing his nappy in front of a hundred people.

There were no other alternatives, so I lifted him up and carried him. Well, dragged him. Can’t quite carry a 50 kg dead weight person in a narrow aisle. My bad.

Lynska was possibly even more horrified than I was. She immediately wrote out an incident report and promised to email it to HQ that very evening. She wanted to know the details of our return flight and she would see what she could organize for us. She was deeply embarrassed by the situation, and I thank her for that.

On the way back to Sydney, of course, the same thing happened. This time our flight attendant (unfortunately I don’t remember her name) didn’t really care. She did explain to me that aisle chairs are only carried on board on long haul flights. There never have been any aisle chairs on board on “short” flights – not even when it is very clear from the booking that a wheelchair-using passenger is on board.

She didn’t really get why I was indignant – until I asked her if I shall just let my son soil himself and his seat (knowing full well that the cabin crew also clean the cabin at Virgin Australia). Suddenly she saw my point that one of them teeny tiny fold up aisle chairs might not be such a bad idea.

I have since contacted Virgin Australia (via Twitter). They were “very concerned” and “very sorry” and would ring me back.

Haven’t got a phone call yet. Funny that.

Seriously, if my son’s dignity wasn’t involved in all this, I would be sorely tempted to let him shit is pants and see what happens…

Sunday, 19 October 2014


The benefit of empty gelatine capsules - I can make one brain pill (for Bipolar) and one pain pill (for neuropathy).

Friday, 17 October 2014

Last week in pictures

He was very very sick on Friday

So off to emergency we went on Saturday - and were sent up to the ward very quickly!

They started the Immunoglobulin (IG) infuse (IV).

Which caused some weird side effects

He was allowed to go home on Tuesday 

And lots of fatigue 

But he's perked up quite a bit!

Here we go again

We had our first meeting with the neurology team at Westmead Children’s Hospital this afternoon since the Immunoglobulin IV last weekend. The doctors were amazed at Beaver’s change. If I would describe our son last Friday the first word that comes to mind would be ‘ragdoll’. He had deteriorated significantly and was barely able to sit up. His swallowing was dangerously affected and the neuropathy had traveled up to his hands. There was no movement whatsoever in his toes or legs anymore.
Today he, ever so gently, kicked a tennis ball with his left foot for the dog. And he can slightly wriggle his toes.
I know, I know, he’s not exactly on a trajectory to represent his country in soccer, but hey. This actually IS a small miracle.
Anyhow, the neurologists are now quietly confident to diagnose Beaver as having picked up an inflammatory neuropathy somewhere along the way (possibly after one of those many infections from falling over). This is good news. No, this is excellent news. Since it is not inherent in his type of HSP this means his sister will not get this. It also means treatment is possible – and the IG IV should help him regain function. Possibly even be able to stand again and take some steps.
Now, how much function he regains depends to some extend on doing physio - stretches, strength exercises and some equipment like AFOs (Ankle and foot orthodics) and down the track a standing frame (his body will need to get used to standing again slowly).
The lovely Deepa, one of the neurologists at the hospital, rang the CPA straight away to request urgent physio for our son. The CPA rang me back some hours later.
They were exceedingly sympathetic to our story and what our son has just been through. But unfortunately, no, physio won’t be easy. They just don’t have enough physiotherapists at the moment, you see, and there are actually no spots available. None. And really, “what these doctors need to realise is that we are not an emergency service”. 
I see.
Physio could mean the difference between a 13 year old boy possibly walking again or not. The CPA is ‘not an emergency provider”, ok. 

But it sounds to me they are not a provider at all – since no physio seems to be available. None. At. All.
So what exactly is the point of the Cerebral Palsy Alliance?!?
Someone higher up the food chain will ring me on Monday to discuss options in further detail. I wish them luck.