Monday, December 28, 2009

Another year almost over

Wow, Christmas has been and gone again, as has my birthday (I'm one of those unfortunate people who have a Birthday just after Christmas when everyone is either away, or busy trying to get away on holiday), and its almost a new year.

I've been having a wee break from manual ABR over the past few weeks but will get back into the swing of things in the new year. For now I am just enjoying the break and spending some time with my wonderful children....

Wednesday, December 23, 2009

Merry Christmas

This is a very quick one tonight because there is still so much to do. Master Corbin has gone to bed very excited about Christmas Day tomorrow. He has asked Santa for a Ben 10 Alien Creation Chamber - exactly what every 6 year old boy needs I'm sure. I on the other hand have asked Santa (on Corbins behalf) for a set of little legs that work properly!!!! This is the standard request for me.......

Anyway Merry Christmas to all. May all your wishes, dreams or prayers come true this Christmas.

Wednesday, December 16, 2009

Things are not always as they seem

For purely financial reasons, Corbin and I generally travel to Sydney for ABR clinics by ourselves. Although Corbin is not very big for 6 years of age (which is so not due to lack of food intake, it is something that goes with the territory for children/adults with Cerebral Palsy) now that he is getting bigger it can sometimes be a struggle carrying him on and off the planes, together with our rather large back pack. However while I still can carry him, ie until my back gives up completely, I do carry him reasonably frequently just for convenience.

On our last trip to Sydney in November, after disembarking from the plane it was discovered that there were no wheelchairs or strollers available at the gate for me to put Corbin in for the rather long trip through the Sydney airport to customs and the baggage claim. So rather than wait (because I had to be at an ABR workshop in Parramatta in an hour and a half - nothing like cutting it fine) I told the air hostess not to worry I would be fine. So I started walking down the corridor.

A very concerned airport staff member (complete with walky talky in hand) in her rather loud and abnoxious Australian twang said to Corbin "You're too big for your Mum to be carrying you".

I should add here that I had been up since 5.30am NZ time, I was cutting it fine to get through customs, get our luggage, navigate the Sydney rail system to get to Parramatta and then find the hotel where ABR was to be held, all with me pushing Corbin in the "big kids" stroller with one hand, back pack on my back and towing a big suitcase behind.

This is not the first time someone has said this, in fact it happens quite regularly, but for some reason on this particular morning I just couldn't let this one go. I think it was the fact I didn't get much sleep - or it could have been the Australian twang. I stopped in my tracks and "politely" said to the lady "You know sometimes things are not always as they seem - I would dearly love to put him down and have him walk but he can't!!!"

The poor lady was rather embarassed and then tried desperately hard to apologise by being overly helpful, I ended up feeling a bit bad for opening my big mouth, but hey she did manage to get us an airport stroller pretty quickly and even got someone to meet us at the baggage collection and help get our things all the way to the train.

So next time you see someone you don't know carrying an older child - don't open your mouth - there may well be a perfectly good reason for it.

Friday, December 11, 2009

Where do you start?

This blog has been set up to follow our journey with our youngest child, Corbin. Corbin has Spastic Diplegia, a form of Cerebral Palsy, as a result of bilateral Peri Ventricular Leukomalacia.

We have been doing a revolutionary "therapy" called Advanced Biomechanical Rehabilitation or ABR for short (www.blyum.com) since November 2006. And this blog is an endeavour to raise awareness of this wonderful rehabilitation technique, the "carrot" for us being a discount in our costs if we blog regularly.

There have been huge mountains to climb and obstacles to navigate already in Corbins first 6 years of life but the following is a very, very brief summary to bring you up to speed.

Corbin was born in September 2003, 12 weeks early, weighing a whopping 1140 grams (slightly more "cooked" and slightly bigger than our eldest son who weighed in at 1080 grams). He was a very healthy premature baby and I thought after the shitty deal we had first time round with our eldest son, that all would be fine for Corbin. Well it wasn't. A routine brain scan at birth revealed Corbin had Bilateral Peri Ventricular Leukomalacia (in English this means "around the brain there are white masses") PVL is caused by a lack of blood supply to the brain and suprisingly enough is not necessarily due to his prematurity!!! As a result of PVL Corbin has spastic diplegia, one of the milder forms of Cerebral Palsy.

For those of you who know nothing about Cerebral Palsy, the orthodox medical profession say that diplegia primarily affects the legs. For Corbin this means that he can not stand or walk independantly. We were told in May 2006 by our Paeditrician that it would be "highly unlikely" that Corbin would ever walk independantly. Because I am a highly stubborn, and yes sometimes pigheaded individual, I was not going to lie down and let that be Corbins lot in life. Those 2 words "highly unlikely" were what led me to ABR.

Corbin is a bright little button who's "issues" are purely physical. His cognitive ability is at an age appropriate level, he has full speech funcion, has bladder/bowel control and has never had seizures which are all great things in the overall scope of Cerebral Palsy. But he is still a little boy having to deal with the frustrations of legs that wont work the way they should, the inability to participate or keep up with his peers, grazed and callused knees, legs and knuckles from crawling, pain and fatigue, the general ignorance and stupidity of mankind, hours of therapy each week and yes a sometimes cranky mum.

This blog will follow both our ABR journey and some of the highs and lows of living with Diplegia. I hope you enjoy it.