Monday, May 27, 2013

A Big Birthday next week

Only one week to go and Master Jay will be 16.  He is so excited, and a little nervous, to be able to sit his learners license next week. He was hoping to sit his learners license on the day of his 16th birthday but the poor boy has to wait one more day because he is sharing his big day with the Queen this year!!!

Monday, May 20, 2013

Speedway Prizegiving

The Riverside Speedway prize giving was last night.  Master Jay collected a few more trophies to add to his collection:
1. First in Best Pairs
2. 2nd in Southland Champs
3. 1st in Season points

Next season Master Jay will move on to the adult Modified Sprints grade and Miss Livee will still have another 3 years in the Youth Grade.  They both have the racing bug so can't see them wanting to finish up with this sport in a hurry!!!

Master Jay doesn't play a winter sport (too busy tinkering with cars and motors - well actually he tried a lot of the traditional winter sports over the years but found that running and coordination are not his best attributes!!). 

Miss Livee plays hockey and netball in the Winter, both of which are now underway. 

And of course Master Corb doesn't have any sports at this stage.  Corb is not only disadvantaged because of his physical limitations but also because he suffers from "the 3rd child syndrome" - where his mother is a bit slack when it comes to getting him involved in sports and hobbies.  I guess you could say my priorities for Master Corb lie elsewhere at the moment. 

Friday, May 17, 2013

Where is the Motor - arggh!!!

5 weeks and we are still waiting on a new motor for the power chair.  Originally we were told 2-3 weeks to get one but today I've been informed that it still hasn't turned up - arggh - there is always something.  Going back to the manual chair for 5 weeks is so hard and we are yet again faced with all the frustrations that come with the lack of independence Master Corb has.  He is reliant on friends to push him around at school, he is not getting to the toilet on time, he has shoulder pain from self propelling, he has wet and dirty clothes everyday from the water off the wheels because there is no clearance from his sides because he has basically outgrown it and to top it off the damn foot plate keeps falling off the manual chair!!  It really makes both Corb and I appreciate the power chair but on the other hand being without it really highlights the limitations of his manual chair.

Thursday, May 2, 2013


Master Jay has been living with extreme pain and discomfort which has gradually got worse over the past 9-10 months in his lower back and legs (not just the right  which he has experienced pain in for most of his life being right side hemiplegic).  

Rest and regular Osteopath appointments over this time have temporarily relieved the pain and discomfort. but 5 weeks ago at his Orthopedic review clinic I pushed the Orthopedic surgeon to get x-rays of his back - well today he had those x-rays and today he has a new diagnosis to add to the list - Spondyloysis.  Here is a quick run down on it taken straight from the website

What is a spondylolysis?

Spondylolysis is the name given to a stress fracture of the lumbar spine (lower back) and specifically affects a region of bone known as the pars interarticularis

The spine comprises of many bones known as vertebrae. Each vertebra connects with the vertebra above and below via two types of joints: the facet joints on either side of the spine and the disc centrally. These joints are designed to support body weight and enable spinal movement.
Anatomy of Spondylolysis

Figure 1 - Anatomy of Spondylolysis

During certain movements of the spine, compressive force is placed on the facet joint. This force is then transmitted through a bony region known as the 'pars interarticularis' (figure 1). If these forces are excessive and beyond what the bone can withstand, bony damage will occur. This initially results in a bony stress reaction, however, with continued damage may progress to a bony stress fracture of the pars interarticularis. This condition is known as a spondylolysis.

Contributing factors to the development of a spondylolysis

There are several factors that may contribute to the development of this condition. These need to be assessed and corrected with direction from a physiotherapist and may include:
  • poor sporting technique
  • inappropriate or excessive training or activity
  • inadequate recovery periods from training or activity
  • joint stiffness (particularly the lumbar or thoracic spine or hips)
  • muscle weakness (particularly the core stabilisers and gluteals)
  • muscle tightness (particularly the hip flexors, gluteals or hamstrings)
  • poor posture
  • poor foot biomechanics
  • age (particularly adolescence)
  • anatomical anomalies
  • inappropriate sporting surfaces
Fancy that - We can tick boxes 4-9 thanks to hemiplegia!!!  If I had heard of this condition before I pushed to get x-rays, I could have diagnosed him myself.  And what can we do about it - absolutely nothing!!!  The Orthopeadic surgeon does not believe it will get any worse because Master Jay has finished growing and physio therapy to strengthen his back and core muscles may help relieve the pain he has been living with for ages but it may not....  He may live have to live the rest of his life "managing" pain.    

We have worked so hard, particularly in his first 12 years to make Master Jay look as "normal" as possible, ie all the "therapies", conductive education, botox and surgeries, all to stop him from walking on his tip toes and stopping him from limping and dragging his foot.  Yes all that effort I put in worked well to make him look normal to the extent that to the untrained eye you can't really see he has a  physical disability. But heres the thing I'm struggling with today - what was the point making him look normal?  Is this spondylolsis (which was obviously going to happen anyway regardless of all those "interventions") going to stop him from leading a normal life?  

We(I) dangled a carrot to Master Jay and told him over and over if  you do this you will walk better, you will be able to run, you will be able to do  what other kids your age can do, the pain will go away etc, etc.  Now its like a kick in the face for him.  I'm sure he doesn't give a shit whether he looks normal when he sure as hell doesn't feel normal!!!!
Cerebral Palsy sucks...