Thanks for stopping by my blog, hope you find it useful in anyway possible :)
We moved to Perth, Australia in September 2007 after spending six great years in London and this is what we now call our home. It’s warm, sunny, chilled out and I love it! My name is Hanna and I’m originally from Stockholm, Sweden. Married to Michael (Aussie) and together we have two kids – Nathan 8 and Cayla 5 years old.
The reason for starting this blog was that in February 2011 about a month before our daughter Cayla’s 2nd birthday she was diagnosed with Cerebral palsy (left monoplegia). At the time I felt a need to write about it, clear my head a bit whilst doing so and also to share our story with others in similar situations and finally provide information about cerebral palsy and hopefully clear some of the misconceptions that comes with it.
It was also a great way at keeping my friends and family in Sweden and England in the loop of what was happening in our life down under. You will find more of our story if you go to the beginning of the blog.
Later on, after an MRI in August 2011, we also found out that Cayla has something called Polymicrogyria (PMG) or congenital bilateral perisylvian polymicrogyria (CBPP). Long crazy name for a rare disorder. You can read more about PMG here and here.
The first year was a tough one for all of us as we were coming to terms with Cayla’s diagnose and processed an enormous amount of information as we slowly began to navigate the system! But with knowledge comes power, the power of understanding that we would be fine, that her cerebral palsy wouldn’t get any worse, it is what it is and we just have to roll with it, there is no other way really. It’s been over two years since we learned about her diagnose and we are of course in a much better place. I am sure there will be ups and downs in the future but that is just what life is for everyone so better get on with it and make the best of our situation.
Cayla is having Botox injections in her left calf twice a year which works really well for her. She is wearing a fixed AFO on her left leg and a hinged AFO on her right. She is doing physio therapy and swimming on a weekly basis and goes to pre-primary at a language development centre 5 days a week. Cayla’s speech is delayed and unclear but is slowly improving with the help of her new school and also weekly speech therapy sessions. She is using a “computer” (Vantage Lite) at school which is working very well and means she can participate in the same activities as her friends better.
We have had our worries and shed many tears over the last two years but Cayla is such an inspiration to us and we have no doubt that she will be doing absolutely fine as she grows older. She is a very social and happy little 5-year old girl who easily makes friends at school and absolutely loves playing with her older brother Nathan.
Cayla is the reason Mike and I started running and bike riding and we really want to show her that exercising and stretching is a normal part in our day as it is for her. We are using our hobbies not only to stay strong in our daily lives but also to raise awareness and important funds for The Centre for Cerebral Palsy. This is where Cayla gets most of her therapy, hydro pool sessions, serial casting, AFO fitting, playgroup and so on and all free of charge. You can read more about this under Fundraising.
Please feel free to contact me if you have any questions or just want to say hi!