Monday, June 28, 2010

Picture Filling.

The picture is emerging now.

Lucy had her ultrasound this afternoon. Another painful but necessary examination in order to fill in the gaps in our knowledge of her diagnosis of torticollis. It took a little over twenty minutes and she coped with it surprisingly well - except for one moment where the technician manipulated her head a little to far in an effort to expose her neck causing her to flinch and cry out in pain. Fortunately we were able to settle her fairly quickly there-after but she was pretty hesitant.

A doctor examined the scans as they were being performed and he hung around until they were completed. He put me at ease by explaining what he was seeing. 

The upshot of it all was as we expected. The right SCM muscle (the neck muscle running from up behind the jaw down to the collar bone) was thickened and significantly shorter than the left - accounting for the marked tilt Lucy has with her head favoring one side. Thankfully, there was no sign of any lesion or tumor that would account for her deformity, so you can imagine the relief there. Also, the technician took a look at her skull, examining the sutures or joins between the bones. They all appeared normal with no over lapping or deformity which means that, with time and intensive physical therapy, it should correct itself.

I brought her home this afternoon with a mixture of relief and emotion and I lay with her on the lounge room rug while she ate my nose and yanked on my beard.

This has been the first real scary experience we've had as parents with either of our children. And I don't mind saying it has knocked the stuffing out of both my serioso and I.

We're still unsure about how to approach the issue of the pediatrician. That keeps changing from one hour to the next...which probably means we'll end up not doing anything. I don't know if that's a good thing or not but right now, I think I'd rather focus on Lucy and getting her right again. Prolonged anger is just a waste of energy in the end anyway. 

We would rather deal in relief right now. Relief that it's just straight up torticollis without there being anything more sinister in play. That was the biggest thing for me. Our emotions have been all over the place and it has made us both extremely tired and a little fragile. Tears have come easily.

The picture fills in and we can go forwards.


Friday, June 25, 2010

The Crooked Face, I Love So Much.

There is only happiness, a care free spirit, an innate sense of love received unconditionally. As she commando drags herself across the floor of our home, she has no idea of what is going on, of the worry that her loved ones bare on her behalf. Man, she can grab a good beard and pull!

For all intents and purposes Lucy goes on, day by day - the happy little infant she has always been. And that alone warms mine and my serioso's hearts and makes the events of the past few days seem lesser overwhelming. But I'm pissed off - and I know it probably does me no good. But I am none-the-less.

Lucy had her first physiotherapy session to assess the degree of torticollis and to structure a plan to try and stretch that abnormal muscle to try and get her back on track. It wasn't pretty but she bared up well. It involves gentle manipulation of the neck in an effort to work the sternocleidomastoid muscle, to lengthen it and hopefully make her skull symmetrical once more - or, more precisely, make it symmetrical for the first time.

Excuse my French but fuck me! How could have this have been missed.


It's like, 2 in the morning as I write this. I'm tired and I'm emotional. I have thought of nothing else these past few days.

Anyway. Our homework with Lucy is to spend an hour each day, using some techniques to encourage her to turn her head in the direction that will facilitate the stretch. My serioso brought a colored rattle with little beads inside that will provide some visual stimulation for Lucy and keep her interested in the exercises. Already, she is displaying a fiercely independent streak and doesn't always do what she's supposed to. I think we may have a firecracker on our hands...which is probably a good thing huh?

To watch her play on the floor, to crawl (aka drag!) herself across it, to sit up and hold herself up in the sitting position using her hands to stabilize her little body the degree of asymmetry is stark. It's going to take a lot of work to get this right again. 

My serioso and I have talked about what to do with regards to the pediatrician. And we've struggled with this. We've swung from being angry and wanting to write a sternly worded letter, to ringing the office and seeking a meeting, to shaking our heads and wondering if we should just let it go. We do have a routine follow up booked for August and I have half a mind to ring the office next week to see if the date can be brought forward. Again it seems to be somewhat of a dilemma. We also have an ultrasound booked for Monday next week and we have decided to go ahead with it. I need to rule out any possibility of a lesion. That's the thing that is scaring the shite out of me right now. The weight of expectation is terrible.

We see the physiotherapist again in a little over a week. That is something less daunting but I know it's going to hurt Lucy. I can take a lot of things but the tiny little yelp of my own daughter...well, that is gut wrenching.

To look into the crooked face, I love so much and see pain...


Wednesday, June 23, 2010

The Tortoise Collar

So today we had the appointment with the Doctor to find out what Lucy is dealing with. The verdict wasn't really nice but at the very least we know a little more now. Lucy has been diagnosed with a particularly nasty torticollis - that is to say "wry neck" in the old terminology. 

Torticollis, in Lucy's case in particular, is a condition where - because of a malposition in the uterus during development and/or trauma during birth and delivery - one of the muscles in her neck has been damaged quite badly and this has caused her not only to favor turning her head to one side but to have it hang down to one side when in an upright position. Added to this is the rather worrying realization that, because she has for so long favored one side because of the damaged muscle - sternocleidomastoid muscle - her head has taken on an asymmetrical appearance - it's seriously been pushed out of shape. One side of her forehead is more prominent than the other and the back of her head has a protrusion that makes it look out of shape. Neither myself or my serioso actually noticed this initially. I kinda thought something about Lucy's head shape was amiss some weeks ago but I pushed it aside, focusing more on the increasingly alarming situation with her head positioning. 

We are now going to embark on an intensive physiotherapy regime with Lucy in an attempt to see if the muscle in her neck can be "stretched", whether the torticollis can be corrected. An ultrasound has also been planned to see how badly the muscle has been damaged or if there is any sort of lesion that might also have exacerbated Lucy's predicament.

The physiotherapy sessions are painful - as the first one last evening proved. Lucy yelped at the manipulation that had to be applied and the exercises that we've been given to do at home don't make for a very nice experience. Unfortunately this has been left to go on much too long and the degree of deformity of the muscle is greater than it otherwise would have been, had we been able to get to the bottom of this sooner.

I feel awful. 

Awful that I didn't twig myself that Lucy was indeed in trouble and awful that I didn't act sooner in getting Lucy seen to. As a nurse I should have picked this up. And I have to say that I am a little angry at our pediatrician. We took Lucy to see the pediatrician a couple of months ago on the advice of my MIL who is a nurse/midwife herself and who suggested that this needed to be gotten to the bottom of. At the time, however, the pediatrician dismissed our concerns as those fired up by an overly exuberant grandmother.

We paid $160 to be told that. 

The diagnosis that was made yesterday was by our GP (our "Becker" - American friends), a well versed and highly experienced medico in children's medicine who came to the diagnosis after a thorough examination of Lucy. 

We were bulk billed for that (i.e. Medicare). 

I've half a mind to call or write our pediatrician to let them know that we feel very let down by their lack of judgment. But that won't really solve Lucy's problems now. I just hope and pray that, because of my own failing in identifying this sooner as well as others missteps, we haven't caused Lucy lasting damage.

To those of you who have sent us messages of support in the last little while - each and every one of you are beautiful people and I thank you.


Monday, June 21, 2010

Swirling Inside The Mind

Midnight is the worst time to be awake. Especially when you have been awake the whole preceding day and you know it's going to be at least eight or nine hours before you are going to be able to sleep again. Such is job that I do, working nights in the ICU of a pediatric hospital.

During these dead hours your mind becomes a kind of vortex of thought processes that refuse to stop swirling around inside the mind and they can get at you after a time. Sleep deprivation is a killer because it amplifies everything - especially your worries, your stresses and your fears. 

I'm worried right now. I need to talk about it - here - where I can do as loudly as I like knowing that it's in complete silence. 

Lucy & Me, waiting to board a flight - my umpteenth, her first.

My daughter Lucy is 8 months old now and she is beautiful. Of course I am biased - no secrets there - but that's just the way she is. Lucy has developed swimmingly. She is getting the hang of semi solid foods, is interacting and is very playful, she is almost crawling now. She can get herself into position to initiate crawling but she hasn't quite worked out the final launch phase. She ends up dropping into a commando crawl position and drags herself along the ground as though she were ducking enemy fire. When I pick her up, she grabs both sides of beard and buries her face in my cheek, giving me the sloppiest kisses. Salubrious affection I think I'll call it. My 4 year old son, Xavy, adores her, dotes on her - always wants to look after her and talk to her. 

But there is one thing that Lucy is doing that is causing me and my serioso great concern. Lucy's head is drooping to one side - as though it is too big for her to hold in a normal position. Her neck is very stiff and whenever we try to straighten her head it is clear that it causes her pain - a lot of pain. 

And it's getting serious. 

We began to notice it a couple months ago and we made an appointment with the Pediatrician. She actually stopped doing it for a while and we took her along to the Pediatrician who examined her and deemed it to be nothing serious - BUT - if it were to come back again, we were to make a follow up appointment with him immediately so he could investigate it further. Which we have now done - so we are left to wait a few days now before we can get her seen to. 

This is the pointy end of being a parent. 

I could be worrying myself silly over nothing and it could just be a simple nerve entrapment or muscle strain that she has inflicted upon herself but - and this is where my mind starts working over time - I fear that it could be something more sinister.

When I was 15 I was diagnosed with a rare form of spinal cord tumor - a schwannoma - which was then diagnosed as being Type 2 Neurofibromatosis. NF is a rare condition where tumors, usually benign ones, grow out of the brain and spinal cord and in some cases the cranial nerves. There's a lot of information out there on the condition so I won't bore you with the details (besides, I'm freaking myself out while I am writing this). Suffice to say there is evidence to suggest that the condition is genetic (ie. it can be passed from one generation to the next). It is too premature to start hypothesizing anything right now until we can have the Pediatrician's input - whose clinical knowledge is far greater than mine could ever be. But at 1AM in the morning when sleep deprivation is at it's worst, these are the thought processes that my sub par mind begins to toss around - the evil little shit (my mind I mean).

As I said earlier, in all other respects, Lucy is a perfect infant and I am probably fretting over nothing. 

Our dog Simon, who is getting kinda grumpy in his older years - he turns 14 on the 26th of this month - he adores Lucy in a way I've not seen him behave around other children. He is very serene and calm around her - inquisitive and he sniffs her face in a protective way (only when I am holding her however - I am well aware that he is a dog after all). But, you know what I mean...Simon is unique in that way. And I trust him. I often find myself wondering if he can sense anything amiss about her neck. I've heard and read about those dogs who can detect cancers in people - I saw a documentary somewhere on them, once - while I was researching for the novel.

I work in an environment where children and their parents live through peril every day. I take a private comfort in knowing that it's not me that's living their experience, that at the end of my shift I can go home and switch off. 

I don't want to be one of them. 


A State Of Mind.

Today I completed a task that I had set for myself a few weeks ago - one that I had some reservations that I would actually achieve.

I have gotten 100 copies of "The Hambledown Dream" into bookstores.

From as far away as Sale in Eastern Victoria to a clutch of stores here in Adelaide - I have spent the past few weeks working the phones, the email account, the pavement and the car in an endeavor to bring "The Hambledown Dream" to as many people (...well 100 of them at least) as possible. I have spent countless hours talking with store managers over the phone and via email, trying to sell myself and my novel and I have dealt with some really nice people...also some fairly ambivalent people.

There are two things I have come to realize about selling a book - it is bloody hard work and I HATE Stephanie Meyer.

I am not a natural sales person - far from it. My primary vocation is as a Nurse and I don't do rehearsed lines at all well. I deal in hard facts not products. I have found it extremely hard to "sell" myself and my book in each of the stores I have gone into - in some cases I have left book stores without success at all. And I have felt pretty deflated. All the people who have read The Hambledown Dream have told me they loved it but in and of itself that is not enough. Word of mouth in and of itself is good but even that isn't always enough.

I have recounted in previous posts my experiences with trying to crack the nut that is the mainstream media. That nut has been virtually impossible to crack and that is starting to get me down too. Because without the ability to speak to a larger mainstream audience - who don't frequent the Internet - it is going to be difficult to reach a larger audience for the book.

I'm sitting here now having just added the last stores to the tracking sheet my publisher and I have set up thinking about my next move. I was so relieved this morning after I signed off on the last consignment agreement that would get my book onto shelves at an Adelaide Hills book seller (see my FB Author Page for details). But that relief was short lived because now I have to wait and see if they are going to sell. And I can't sit idle and just hope that is going to magically happen. Yet I have no budget for any form of advertising in anything mainstream like the newspaper. Facebook can get you so far, as can Twitter and any one of a number of other online portals that offer a free form method of "advertising".

Stephanie Meyer is saturated throughout every bookstore I've been into these past few weeks. She has a massive marketing machine behind her which has facilitated a BABILLION sales of her works. From where I stand it's like looking at Everest. How can I compete with that??

Successes are short lived. Writing the book was just the beginning. I sit here, less sure of myself now than when I was when I first began to write the novel that I tried for so long to write.

I don't really hate Stephanie Meyer...although the last good vampire flick I saw was Lost Boys...


Thursday, June 17, 2010

The Hambledown Dream makes KATG!

At 3AM this morning, during a quiet lull at work I nearly fell off my chair whilst listening to the latest episode of my favorite internet talk radio show Keith & The Girl

Keith & The Girl gave The Hambledown Dream a wonderful plug!

I was actually pre-warned by one of the KATG stalwarts "Newsy" who happened to be on IM at the time that Keith's mention was coming up and I have to admit, I was quietly crapping myself. As a comedian, Keith Malley is acerbic, blistering but bloody funny. What would he have to say?

You see, there is a bit of a history behind this, because I have been chasing Keith & The Girl for a while now in the hope that they might make a mention of the novel on their show. The only way I could do that, though was by sending them a copy, which my publisher graciously agreed to do on my behalf. 

Keith & The Girl is a show, quite unlike any other. It does not conform to a particular genre, they are not constrained by the rules that govern terrestrial radio. Thus they are, in a word, able to get away with anything. Which they do, but it is all so wonderfully funny. I eagerly await each new episode like an addict waiting for his next hit (pardon the pun).

Anyway - despite the sarcastic raucousness of it all - the piss-takey nature of Keith's...rant...there is a lovely spirit underlying his little plug for my novel. I have been beaming like an idiot the whole day since I heard it...


Monday, June 7, 2010

"Dream" People - Inspirations For The Characters In The Hambledown Dream (Part 8 - Dennis "Denny" Banister).

And I finally come to the second major character in The Hambledown Dream, the person who is responsible for all of this.

Dennis "Denny" Banister is another one of those characters that has been with me for pretty much my entire adult life. He began his own life waaay, way back in 1996 or thereabouts, when I first began working on my futuristic political thriller novel "Syndrome". In that work, Denny was the protagonist - a Bladerunner-esque detective in a dystopian future who is on the hunt for a shadowy terrorist cell who may or may not have infiltrated the U.S. government. He was portrayed as a dogged but defeated man in his mid-30s who has turned his back on the Australian Federal Police after a botched sorte into South America which resulted in the deaths of two members of his crack counter terrorism unit, and he has retreated to rural Victoria, Australia to raise a daughter he barely knows alone. His wife had died some years before and...yada, yada, yada...

We all know by now where that story ended up don't we...

But as with certain other characters who now populate the pages of "The Hambledown Dream", Denny's was a character I was reluctant to let go of. Of all of them, Denny was the one character who stuck with me through my early failures as a writer and the opportunity to incorporate him into the novel was one too attractive to resist.We witness in just a few short pages, the tragic decline of a wonderful, loving and generous young man. Not to miss gifted also. He is a virtuoso guitarist of a truly sublime talent - one who can deliver both a technical mastery of the instrument as well as an emotional well spring that drives his ability into seemingly unattainable directions - a stark contrast to the technically brilliant but emotionally barren qualities of Andy DeVries.

Denny has the world at his feet. He has just completed an architectural degree, he is about to start his own business and he and Sonya are planning to announce their engagement. All that is cruelly taken from him when Denny discovers - too late - that he has inoperable cancer. In a breathtakingly short time - he is terminally ill and about to die. A brilliant life, a brilliant light - cut short much too quickly. But just when we think that all is lost for this young man, we are given subtle hints that suggest that Denny's journey may not yet be over. We witness Denny's life in flashback as we witness the synchronicity of another young man's journey in mirror image.

Actor Hayden Christensen, the inspiration for the character of Denny Banister.

In visualizing Denny as the vibrant and alive young man in the dreams that are peppered throughout the novel, I was drawn to Canadian actor Hayden Christensen as a physical template. Christensen, whose work in George Lucas' Star Wars prequel trilogy was examined more critically than most other stars working in that genre, delivered a performance in a much smaller production called "Shattered Glass" which, I felt, was nigh on perfection. Christensen is capable of such intensity which he delivers through his eyes and his subtle gestures. He can be malevolent and soulful, witty and tender. He is not nearly given the credit that he is deserving of. There were a number of dream sequences in the book which I crafted with both Rose Byrne and Hayden Christensen firmly in mind and they worked really well.

Denny's journey, is as tangible and real as the journeys of my other characters and in writing it, I found myself wondering about the nature of death, what lies beyond and how the strength of love may well play a role in the continuation of a life beyond death.