Bugsquash's Wanderings

You weren’t like other children,
And God was well aware,
You’d need a caring family,
With love enough to share. 

And so He sent you to us, 
And much to our surprise, 
You haven’t been a challenge, 
But a blessing in disguise. 

Your winning smiles and laughter, 
The pleasures you impart, 
Far outweigh your special needs, 
And melt the coldest heart. 

We’re proud that we’ve been chosen, 
To help you learn and grow, 
The job that you have brought us, 
Is more than you can know. 

A precious gift from Heaven, 
A treasure from above, 
A child who’s taught us many things, 
But most of all- “Real Love” 

Anon

This rings true.  

From my family to yours, be kind to each other and have a very Merry Christmas.

Hey all,

Well, another birthday has come and gone with alarming speed.  I find myself feeling a little guilty about a lack of updates but then I look at just how busy I have been since my last post.  3 birthdays, several hospital visits, a fishing holiday with no fish, and just general young family static.  It feels like time is flowing through my hands no matter how tightly I try to grip on to it.

September is Cystic Fibrosis awareness month here in Queensland and I am going to raise the profile of CF within the community.  Cystic Fibrosis Queensland (CFQ) have pointed me to a site via their twitter feed @CysticFibrosis_  http://wtcf.com.au which has a wealth of info and some profiles of people involved with CFQ

Please spread the message of what CF is all about.  Awareness will bring funding which in turn will lead to research and an eventual cure for this horrible disease.  

Stay healthy

Hi people,

I just wanted to give the CF community a heads-up on some new information regarding the safety of home appliances like dishwashers in the homes of people with Cystic Fibrosis.  Apparently there is a nasty pathogenic fungus called Black Yeast that is tougher than Superman and it doesn't have a Kryptonite.  This fungus loves colonising household dishwashers and is a major threat to people vulnerable to pulmonary colonisation.  To give you idea of how bad, Black Yeast has been known to kill healthy people with no lung problems.

The research paper is from the British Mycological Society Journal and it shows that household dishwashers are the perfect breeding ground for the all sorts of extremotolerant fungi, of which Black Yeast is just one.  62% of dishwashers have fungus on the rubber door lining, of which 52% had the extremely dangerous varieties of fungus including Black Yeast and it's twin which I am going to call Plague Yeast.  Both varieties are tolerant to heat, salt, aggressive detergents, acid and alkaline solutions.  This combo is a real knockout and something that hasn't been seen in nature before.  These things have evolved to fit a modern westernised kitchen, the Beast of the middle class if you like. 

What does this mean for families with CF...  Well that is the big question.  We always have to balance our lives between risk and reward.  Do we go to the shopping centre to buy groceries with our CF child and expose them to all the nasty bugs in the crowd, or do we stay at home and not shop for essentials. Do we miss out on the medieval fair for the whole family and keep our CF child safe, or do we give all of our kids, CF and non-CF,  a fantastic experience and vital family memories of fun times together. 

Now the question is do we stress out already stretched CF caregivers by taking away a labour saving device that will save many hours of needless dish washing, or, risk the life of the ones we work so hard to keep healthy?  Maybe a middle road.  I am not sure how difficult these morbid mushrooms are to kill but we can at least monitor the status to see if we have them. Big black outbreaks on the rubber lining of the doors should be easy to spot.  We could replace the lining with a new one after a scrub and dry out.

If anyone knows someone in the appliance industry, give them a poke and see if they know of the issue and already have a solution.  If so let us all know. 

Link below

http://www.physorg.com/news/2011-06-dishwasher-fungal-pathogens.html

More information: P. Zalar, M. Novak, G.S. de Hoog, N. Gunde-Cimerman, Dishwashers - A man-made ecological niche accommodating human opportunistic fungal pathogens, Fungal Biology, In Press, Corrected Proof, ISSN 1878-6146, DOI: 10.1016/j.funbio.2011.04.007

Connectedness.  It is something that fascinates me.  I was born in the early 70's and I think that it has shaped my views on the world.

I was born into a world, that by todays standards, was barren of links.  Links to people, links to information, links to events, basically life was simpler.  We had land line phones, radio, TV, CB radio, shortwave radio (for the geeks), and the beginnings of home computing but this was small time and in it's infancy.  Enough to cut my teeth on and I was luckily on the front of the wave of new tech as my life unfolded.

My Kids are a different story altogether.  They were born into a connected world.  They have never known a world without mobile internet/phones. Never experienced a world without Google.  Never not been able to view whatever they want on Youtube.  Never been alone without their friends on YouTwitFace (Youtube, Twitter, Facebook). Never been without a wiki to guide them through a problem.

I wonder how different their world looks to them compared to how mine looks to me.

I know they certainly vacuum up technology like the latest Dyson.  One thing I have noticed is the merging of their online worlds into their real non-digital life.  My 2 boys have done nothing but chatter about their latest Minecraft exploits over the last couple of weeks.  Their conversations are starting incorporate their online chat terms and more so than the Ohh eeM Gee phenomenon did previously.  Now they are starting to display emotions and phrase whole sentences as verbal emotes.  For example if they are confused or need an explanation they will say "question mark".  If they are unhappy about being told to do homework they will "sad face".  The reverse is true if they get their favourite dinner they will verbally emote "smiley face".  The latest that surfaced today is "gee arr arr" for GRR as in anger.

I suppose I should be happy that we are evolving in our use of language and the term "Dad you have been PWNED!" is being pushed behind the rush of new terms and words.  Mmm the english language is on a cusp of change that I believe us old farts are not even aware of.

In the words of Zaphod Beeblebrox, "I am so hip, I have difficulty seeing over my own pelvis"

(UPDATE)

It seems as though the claims that he found something new are a little mis-understood (again) by the mainstream media.  He has merely been looking at the 2 drugs in an existing phase 2 trial and confirmed that the supercomputer can predict what happens at a molecular level.  

http://sanofibiotalentchallenge.ca/2011/05/04/toronto-student-%E2%80%9Chacks%E2%80%9D-supercomputer-network-to-find-cure-for-cf/

The actual drug trial is EXTREMELY promising but not new and to now have some hard modelling done showing how it all hangs together is fantastic.  The fact that this modelling can be used for other drugs and diseases using this young mans techniques is a good move ahead in medical research.

Corrector VX-809 plus Potentiator VX-770: Vertex Pharmaceuticals, supported by CFFT. VX-809 is a "corrector" that helps move the defective CFTR protein to the proper place in the airway cell membrane and improve its function as a chloride channel. A Phase 2a trial in CF patients with the F508del mutation, was completed in 2009. A trial of VX-809 plus VX-770 is ongoing.

http://www.cff.org/research/DrugDevelopmentPipeline/

(ORIGINAL)

Wow it heartens me to see such young genius making a difference in our fight against this disease.  I have seen a lot of miracle cures come and go over the years but maybe, just maybe...

http://www.gizmodo.com.au/2011/05/student-uses-supercomputer-to-potentially-cure-cystic-fibrosis/#comment-136465

If anyone has any details or a link to his study PLEASE LINK ME UP.

A big shout out to my work colleague Jarrad for bringing this to my attention.  Cheers mate.

Watch the video and you will understand.

...because it might be your last.

A cliché.

A small pretty young blonde girl, dwarfed by the massive gurney she sits upon, is wheeled through bleached and scrubbed hospital corridors. Her father is walking alongside, hunched over her protectively, holding her tiny hand in his warm grip.  An unconcerned orderly pushes the gurney through corridor after corridor, door after door.

They arrive and plunge into a room of blue gowned and capped smiling people. The small girl looks up, sees the welcome and doesn't like it one bit.  The mood darkens.  Panic starts to bite.

A doctor sidles up to the gurney and expertly brings a mask up to cover the small girls face. The girl decides that this is too much and starts to fight and struggle. Her father holds her gently, strokes her hair and whispers solace into her ear. It doesn't work. The only thing the father hears over the screaming  is the doctor saying "Turn the gas up Sandy." The struggles continue right up to the ten count, then nothing...

The small girl slumps back into the doctors arms and he lays her onto the table.

Fear.

Washed away. 

Sleep , slumber, oblivion, it brought relief from panic.

The father has tears in his eyes but retreats to let the experts get on with their assigned life saving tasks.  He covers his own fears with false bravado.

Two parents wait in a hospital room.  Anxiety is not just thick in the air, it is the air.  An empty bed waits for it's precious burden to be delivered. Both parents are in a haze of worry. They occasionally glance over and give each other a nervous smile then go back to their worrying thoughts.

One hour goes by. The phones are silent.

Two hours come and disappear into the atmosphere of worry and apprehension.
The doctors said, in the arrogant style of someone advising on a routine job they have done thousands of times, they would be an hour in the absolute worst case. They said to wait for a phone call form the nurse in recovery then you can come and pick your daughter up.  They said she would be fine.

Neither parent wanted to break the spell. It was as if someone said something, then an uncontrollable chain of events may be unleashed. They didn't want to open the box that contained Schrödinger's cat. If they continued waiting then they could pretend nothing bad had happened and all was well.

Two parents sitting, waiting, worrying, hoping.

Two doctors walking, frowning, thinking, preparing.

The doctors walk down a corridor and turn into the room were the parents wait. The parents see them from across the room and panic sets in immediately.

Panicked thoughts;
What are they doing here?
This isn't right.
Where is the phone call?
This isn't happening.
Get out of here and tell the nurse to make the phone call.
Get out of my road, I'm going to get my daughter.

The lead doctor holds his hands in front of him palms down as though trying to suppress the reactions. He must be able to see the fire in their eyes, the danger in their faces. He knows the family well, as he has been treating the little girl for a few years now. He speaks with a calm voice in his slight Asian accent, "We had some problems with the procedure. Your daughter reacted to the gas and stopped breathing and her heart had some trouble.".

Shock.  White hot fear searing to the soul.

His wingman picked up the thread in the abrupt silence,
"She is OK.  We 'bagged' her to assist her breathing and her pulse stabilised".

The lead doctor started up again,
"We continued and completed all the objectives of the procedure and she will be fine.  It just took a while to stabilise her."

The mother broke into sobbing tears. The father battered them with questions. After a few minutes of this his thoughts crystallised and his hunger to be with his daughter became uncontrollable.
"When can we be with her?".
"You will have to wait for a phone call from recovery.".

They leave

20 long minutes pass
The phone call comes.

Kelly (my daughter), Robyn (my wife) and I had a rough day.

This was a day we had a while ago.  I posted this to an online community I am a member of, www.theoldergamers.com , and thought it might be worthy of sharing with my new blog. Please excuse the grammatical errors.  It was late when I did it and I was a bit emotional.
For those that care my daughter has Cystic Fibrosis and she had been admitted because she had a bad lung infection. This time they wanted to do a bronchoscopy and insert a picc line. The Bronch is information and sample gathering. The picc line is a long term IV line that doesn't blow out every 2 days like a normal IV does with Kelly. They insert it in a vein in the upper arm and it gets pushed through to the Vena Cava http://en.wikipedia.org/wiki/Superior_vena_cava . Both of these are done under general anaesthetic.
She reacted badly to the gas and stopped breathing. They bagged her for a while and did some magic and she started again eventually. They didn't get too specific but the doctor did mention that one of her lungs deflated. They had some issues after that with the size of the bronchoscope but sorted them fairly quickly. Her lungs were a bit of a mess at the time.

Anna Bligh and the Queensland Government need to re-assess their lack of funding for Cystic Fibrosis Queensland.  We Just lost 8 staff from our small charity due to a huge outlflow of sponsors.  The Global financial crisis and the recent disasters in QLD, NZ and Japan have all had there effect of draining charitable donations.  We now have 1 support staffer to look after the 850 families across Queensland.  $350000 means we could have kept our regional offices in FNQ, Central QLD and the Sunshine Coast open. Now families are struggling.  We save them $7,000,000 year by keeping CF sufferers out of hospital you'd think that they could spare the funding.  Seems like a good investment in Queenslands future to me.

Time to go. Later people.

Hi world,

I thought it would be good to start getting serious about making my writing and opinions available to the world.  I am a wannabe writer and one day I will have the guts to start a new career in that field but right now I have some other priorities.  My family must come first so for now I am just testing the waters.

Social media is certainly changing my world view and opening up layers of communication I wasn't fully aware of.  That is, I wasn't aware of how deep and broad the possibilities are.  I am excited to see how this aspect of humanity can evolve given the recent local emergence of Social Media as a mechanism for people to deal with large scale disasters.

Anyway enough with the hippy existentialism on all things internet.  I am a Family man, a gamer, a writer, a public servant (one of the good ones, my words here reflect my view and are nothing to do with my employer), a pragmatist, a seeker for justice, a fisherman and lots more.

Welcome to my blog and I hope you are enlightened and touched by some things I write and scandalised by others.  I wont censor any comments other than hateful, racist posts or words I consider swearing (my kids will read this).  Trolls beware I am no noob.

Cheers

Darren