Sunday, 28 April 2013

Our Latest QEEG Results

Cameron having a QEEG

Yesterday we got Cameron's latest QEEG results and things are a little complicated at the moment. He is still doing really well and his brain is still improving but we've had to take a step back in his therapy because his brain didn't respond as expected to the last change in this therapy.

Cameron has been growling and whimpering during therapy sessions while he is on the stimulation machines and this shows that it has been stimulating a section of the brain that we didn't necessarily need to stimulate.

At home I had noticed that he was becoming very unbothered by life. Why should he get his shorts out of the drawer or lift his leg up so I could put his shoe on. He was becoming very lazy and expecting me to do it all for him without any desire to do it himself. He couldn't be bothered. Well it turns out this is all the same part of the brain and definitely not the outcome we were after.

We've changed his treatment plan back to how it was six weeks ago when he was going from strength to strength and hopefully his brain will respond positively.

At the same time Cameron is also coming off another of his anti seizure medications. This is so exciting and he is two reductions in and doing really well. We introduce the next drop tomorrow.

Last week I noticed Cameron repeating words we hadn't heard before such as Jess, Muzz Buzz, car park. He doesn't say them like you or I but you can tell what the words are he is trying to communicate. He is also wanting to help with household chores such as putting clothes into the washing machine, carrying shopping and drying dishes. He seems to have reached another level of consciousness - very exciting. Hopefully the next few weeks will see an even bigger awakening.

Once he is off this medication that will leave him on only one anti seizure medication and that is incredible. He has never been on only one - ever. Our dream is to have him on none.

Cameron during treatment.

Friday, 26 April 2013

Cam and Sam

Some of you will remember Sam, Cam's friend. He was the one who helped Cameron climb the climbing frame and he seems to always be around when magic happens. Sam has a gentleness about him that Cameron responds to and he takes the time to wait and gently guide Cam.

This weekend our families caught up and Cameron wandered into the room Sam was in to see what he was up to. Sam had his electric guitar out and Cameron was intrigued. In the past Cameron has interacted with guitars but it has been at the risk of the guitar owner and really this time was no different.

Sam helped Cam to sit comfortably and then helped him to hold the guitar. I was in the next room watching this all unfold from a distance and it was a very calm and lovely scene to watch. Cam was excited and remaining calm. In the past he has been less than gentle in situations like this but I watched as he strummed the guitar with a grin on his face and care in his moves.

Sam stayed next to Cam but let him experience the joy of making music and be free to do what teens do.

It was another magic Cam and Sam moment that we managed to catch on film.

Thursday, 25 April 2013

It Makes You Think

17 years ago we were living in the infant ward and watching a sleeping baby who wasn't waking up. Cameron had made it out of ICU but was still not expected to survive by the hospital staff - we had different thoughts. Call it denial or call it hope we hadn't given up, every day was filled with optimism for the future, whatever that may now mean.

17 years later I sit here typing watching my son watching The Wiggles on TV whilst flipping through a magazine with one hand and interacting with a talking app on his ipad with the other hand. He is loudly interacting with the talking app in sounds that kind of resemble words but aren't really whilst not taking his eyes off The Wiggles. He can multi task.

It has been 17 long and exhausting years of love, therapy, school, appointments, doctors, hospital dashes, ambulances, cuddles, medications, alternative practitioners, supplements, friends, family and hope. It hasn't stopped for a single minute because that is what being parents means - the love never stops and you will do whatever it takes for your child to help them along their journey to reach their life goals.

People have told me over the years that I am incredible, amazing, inspirational. That they couldn't do it and they don't know how I do it. But the truth is I am no different to everyone else it's just that my life journey took an unexpected turn and I am doing things a little differently to everyone else in my life. You would do the same for your child.

Having lived in this different world for a while now I have realized that everyone copes differently with their change in course and I think that is what people see more than super human parenting, Some parents fall apart emotionally at the beginning and need help to get started. Others hold it all together for a really long time and then fall apart and need help to pick themselves up again. Some appear to never fall apart but don't believe them, they are falling apart when nobody is watching. And some people fall apart on a regular basis and need someone to help them along their journey permanently..

Some parents drink or smoke, some eat, some run, some shop, some work tirelessly for charities, some fill their days with everything and anything. This is how they cope. Some run away but I don't think they do that lightly. Marriages fall apart, friends are lost and families become isolated

But this is all part of the journey. When you find yourself on this new path everything you knew and believed is challenged. Your plans are halted and challenged. You are forced to step back and think about your life, your goals, your dreams, your beliefs and your priorities. You spend hours questioning the world, the universe and everything in it. You question your place in the scheme of things and why you do what you do. You search for meaning and signs. You change as a person and sometimes the people around you aren't able to join you for the ride.

Some people get very angry and people only see the anger and not the reason behind it. Some people drink a lot and people only see the the empty bottles not the reason their empty. Some people let themselves go or change their appearance and people don't see the reason why, only that they aren't them anymore. It's understandable that those around us get confused, we have changed and we have new insights into our lives that are difficult to explain. We are on a different life journey and we can't return to the old one.

I know I've changed and I'm still changing and it's all because of Cameron. I have questioned almost every belief I had and almost everything in my life. I look at people differently and look at relationships differently. I value life differently and no longer value things like I used to. I am far from the path I was headed for and I don't think I'm sad about that. I wish Cameron hadn't got sick but I'm not sad that I've changed because a lot of it is good change. Cameron has opened my eyes and made me stop and ask why? .

Everyone changes as they journey through their lives but I think when you have a child with special needs you change paths suddenly and therefore the person you would have become has gone and suddenly with your child you turn the corner and journey along different paths together. Thankfully it's much easier to journey together.

Tuesday, 23 April 2013

World Meningitis Day 2013

Meningitis is a disease that can make you feel powerless. You watch your loved one fight for their life and holding their hand is the only thing you can do. World Meningitis Day is a day when you actually can do something - you can try and save others from the same fate.

On the 24th April meningitis organizations around the world are uniting to raise awareness of this disease, increase awareness of the signs and symptoms to watch for, appeal to their governments to provide scheduled vaccinations for the strains of meningitis we have discovered vaccines for and to  push for further research to hopefully find more vaccines to halt the strains we can't vaccinate for yet.

A lot of countries have meningitis organizations usually formed by distraught parents who have lost their children or who now live with children who have life long disabilities because of their brush with death.  Most of these organizations have come together under the umbrella of CoMO - the Confederations of Meningitis Organizations. Currently CoMO's head office is in Perth, Western Australia sharing an office with our australian meningitis organization - The Meningitis Centre.

The Meningitis Centre was created after the founders daughter survived Pneumococcal Meningitis but was left with life long disabilities and her father wanted to help save other families from the devastation which had affected his family. Perth also has the Amanda Young Foundation founded in memory of Amanda who died after developing Meningococcal Meningitis. These two organizations have worked hard to increase awareness of meningitis in Australia, support research and achieve scheduled vaccinations to save future generations.

Our personal meningitis story started 17 years ago when our baby son developed Pneumococcal Meningitis at 5 1/2 months. Miraculously after 10 days of fighting for his life in ICU and two months in hospital he won his fight but life was changed forever because our baby left the hospital with severe brain damage. epilepsy, partial deafness and severe muscle weakness down his right side.

Meningitis organizations are sometimes the only point of support for families who have been through this horrible journey. Our family couldn't spell meningitis let alone understand what had happened and a lot of comfort was found in a little Meningitis Centre pamphlet we found in the parent room of the hospital. The Meningitis Centre had been formed and they'd put out their first pamphlet. 17 years later they do much more than one little pamphlet. They distribute information and literature to hospitals and any organizations who request them, they give awareness talks so medical professions can understand the impact the disease has on families, they provide on line and phone support to anyone who wants information and/or support. They collect data and work with researchers and government departments to ensure research is continued, community awareness increased and vaccines are scheduled.

For World Meningitis Day we Join Hands for Meningitis to raise awareness. Joining hands is a symbol of solidarity, strength and support. Linked together we are strong and supportive. When someone is lying in bed fighting for life holding their hand is often the only thing you can do to physically support them and afterwards they often need a helping hand to journey through life.

So please, on this World Meningitis Day, visit the CoMO website and if you are outside of Australia and would like to connect with a meningitis organization in your country this is the website to help you. and their facebook page

In Australia please visit The Meningitis Centre website. and their facebook page

And if you live in Perth, Western Australia and are free at 11.30am please come and join us in the Murray Street mall to Join Hands for Meningitis. Imagine a line of people down Murray Street mall joining hands to show their support for the families who have been touched by meningitis and showing the government that we care and want scheduled vaccines to halt this disease.

If you can't join us in the Murray Street mall that doesn't mean you can't show your support. Take a photo of yourself, your family and friends Joining Hands for Meningitis and post it on the CoMO and Meningitis Centre facebook pages.

Please don't let this happen to someone you love.