Hey All,
So, right now, I’m sitting here listening and watching in amazement as one of our pet rats, Ben, does his little power run on the wheel in their cage (rather unnatural for a rat, I swear he has a fitness regime, maybe I could make him his own fitness DVD… haha) and my lovely fiancé is fast asleep in the bed behind me, thankfully… as while he is sleeping his abdominal pain is giving him no trouble. Bubbles however doesn’t seem to have picked up on Ben’s little habit, so he’s a bit of a chubba.
I’m so glad to be able to kick back and let the rats entertain me after our busy couple of days in Melbourne. I had two appointments at the Royal Children’s Hospital in preparation for my big operation in August. I went to the Hugh Williamson Gait Laboratory, and had a CT scan today, but those two things are only the beginning of the fun times I’ve had at RCH over the past 20 odd years.
Let me start with the Hugh Williamson Gait Laboratory, (for anyone who doesn’t know what Gait means, it refers to the movement your legs make when walking). I have had at least three different types of tests there before. There’s The Oxygen Test: Which is used to determine how much oxygen a physically disabled child (or a child with Cerebral Palsy, in my case) will inhale and exhale whilst walking over a certain distance (just for anyone interested, when I last had this test, my oxygen levels were three times higher than an able bodied person), The Bubble Stick Test (that’s my name for it, not very scientific) which is where they put little sticks with reflective balls on the ends of them at different points of your leg and hip bones and on the base and then using special technology take video that looks like a join the dots picture on a grid of the positions your bones are in when you walk. Then of course, there is what I call The Catwalk test, which is where they take standard video footage of you walking up and down a grey line in the middle of the room. So they’re pretty simple tests really, but at the same time, they’re very tiring and even, to be honest, a little embarrassing. I say embarrassing because in the gait lab, you have to wear shorts and a singlet top, both of which get rolled up, and I’m not at all comfortable feeling that exposed. In my appointments at the Lab, they also do a series of stretches and extensions, to see how my muscles are coping… but that’s the Lab in a nutshell pretty much.
I don’t think I need to touch on X-Rays and CT Scans, because I’m pretty sure everyone already knows what they are. The only thing I will say is, I would shudder to think just how much radiation I’ve been directly exposed to throughout my time at the Children’s. I’ve also had blood tests, I’ve had Botox injections (yes you read right) Botox is a muscle relaxant, so it has its medical purposes too, as well as its cosmetic ones and it has been of huge benefit to me.
I have also had to pay regular visits to the orthotics and prosthetics department, as up until about 4 years ago I had to wear orthotics. They started at the end my toes, ran under the foot and up the back of my leg until it was just under my knee, these had to be done up with Velcro straps and especially long socks had to be worn. The wearing in process involved in wearing this orthotic is much like a new pair of shoes, only I found it to be a tad more painful than that (and I still have the scars and calluses to prove it). My first ever pair was so small, the foot was about an inch long and the leg was about 3 inches high.
Throughout the 20 years or so that I have visited the Children’s there has been specialist visits, (my specialist being one Professor H. Kerr Graham, the leader in his field. Without that man, I don’t know where I would be, but I know for sure it wouldn’t be good), long uneventful waits to get a plaster cast or orthotics, x-rays or CT scans and long periods of time where I was not allowed to eat or drink. Not to mention, that because we lived 3 hours away any visit to the hospital, regardless of what appointments we had, was a very long, very tiring day. I feel like I know the ins and outs of that hospital like the back of my hand, probably like most children who have to put up with the Children’s as a permanent fixture in their 18 year childhood, and for some, even longer. I’ve stayed there, I’ve played there, and I’ve laughed, cried and screamed there, I’ve turned up my nose to food there, vomited there, and hurt there… But I also know one very important thing, as I sit here and type this feeling that all too familiar pain in my muscles and knowing that I have the circles around my kneecaps that are drawn there to make them more identifiable in video, I know that without the Children’s, my life could have been very different, and without a doubt a lot more painful and frustrating. So I have a lot to thank them for and I will continue to thank them for the rest of my life.
"...Knowing I have the circles on my knees.."
Please guys, next time Easter rolls around and the RCH Good Friday Appeal is on the telly and in the fire trucks around town, give generously. Kids all over Victoria, Australia and even the world will thank you for it, for the rest of their lives. Just like me.
Cheers.
