Wednesday, 2 January 2013

What is Cameron Up To These Days?

Having been so long since I updated you on Cameron's progress I thought it might be a good idea to bring you up to date.

Cameron is still attending The Institute of Functional Neuroscience three times a week and we continue to see improvements and changes in his brain. The last QEEG was extremely exciting because all of a sudden a lot of the brain matter which had been under functioning was functioning at a normal level. This meant we could change his therapy and make the big push for speech.

Just before we had Cameron's last QEEG something quite spectacular happened. Cameron's teacher, speech therapist and his main doctor from The Institute had a meeting and discussed what each of them do with Cameron, what they felt they wanted to work on with Cameron and how they could all work together to support each other's aims. Collectively they are all working towards speech but school is also focusing on fine motor skills and gross motor skills whilst The Institute is still working to improve Cameron's brain function.

In seventeen years I have never had this level of co-operation between two different agencies let alone three. They are sharing results, plans and staying in contact between meetings. This is really wonderful and will make 2013 a very productive and supported year. We have the most amazing teacher, speech therapist and doctors.

The other exciting thing to happen was Cameron coming off one of his anti epileptic medications. He has gone from three medications to two and if his EEG results at the hospital support our beliefs then in a couple of weeks we will start weaning him off another of the medications leaving only one. Our goal is to come off all his medications if he can survive without them. He hasn't had any seizures so it's looking good.

As Cameron's brain has improved his world has opened up and the rest of us are getting a little less resting time. He's become very inquisitive and observant and needs less sleep. We often find him repeating an action or movement we have just done. We keep finding lights turned on, fans turned off, air conditioners reset, hot plates turned on, outside doors left open, taps turned on, etc, etc etc. He's even figured out that keys open doors but doesn't have the fine motor skill to use a key yet - we're in trouble when he does.

Cameron is following conversations more easily and we are able to trust his yes and no responses much better than before. He will offer opinions and answers during conversations and although we have no idea what he is saying if we respond positively he seems content that he has had his say. He's also a lot more opinionated about what he does and doesn't want to do.

The iPad is still worth it's weight in gold and is used at school, in therapy, at home and out and about. His favourite apps at the moment are the talking apps which repeat what he says. Cameron is playing with his voice and volume although he does still seem to be stuck in loud most of the time. Right now as I type this he is two rooms away deafening me whilst he talks to a talking app and listens to The Wiggles on the loudest volume setting possible. Now and then you can hear him joining in with the songs.

Lately we've seen an increase in dry beds sometimes also with dry pants. Cameron is going to the toilet a lot more independently but still needs to learn to put the toilet seat up and actually wee into the toilet not on the floor but we are getting there slowly but surely.

So on the whole Cameron's abilities are increasing and his world has grown but he still likes most of the same things and can reach anything he wants which is making our life a little more challenging but also exciting. MMM and myself keep finding ourselves telling each other to come and look and quite often he is doing things we never even imagined he would ever do. Life is good.


  1. Oh wow! what a wonderful post filled with love and positivity! You guys have certainly been busy and now Cameron is making such excellent progress. You all have so much to look forward to in 2013! Onwards and upwards! Happy New Year. x

  2. Awesome awesome stuff...wouldn't it be wonderful if even at this late stage he started to develop like a normal young child

  3. Loved reading your post, Jane. It is fabulous to hear about so much positive change in Cameron's development. I really take my hat off to all of you and wish you continued growth and happiness throughout 2013. Julie L xxoo

  4. What wonderful progress. You are fortunate to have such a great team of people all working together. Lovely news, Jane. Onwards and upwards for 2013.

  5. Wow this is brilliant news. What great progress. I hope that 2013 is wonderful year for you and that you will see a lot more progress in the coming months

  6. what a lovely post, it's so good to hear that Cameron is doing so well and that he is getting so much help. It sounds like you have a lot to look forward too. Well done Cameron x

  7. Thank you for your supportive and positive comments. It's always wonderful to share Cam's news with such supportive people. 2013 is looking very positive for Cameron which is exciting.