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!
Blog January_6

14 thoughts on “About

  1. Greetings from Norway :) I just want to say that your blog is very very good and I will reckommend it to a friend of mine in South Africa who also has a daughter with CP. Her daughter is 10 yrs old. I too have a daughter with CP, my daughter is 21 yrs old. Her name is Tamarin.

    Your comments about Botox is what caused my attention. My daughter started having these injections in her right arm about 5 years ago. This works very well for her. About four months after the injection is on its way out of her body she starts asking me when she is due for a new one as it gives her a lot of relief from spams. Tamarin also has spasm in most parts of her body, it’s not that visible but she is greatly troubled by this. It is however mostly visible in her face, around her mouth. We have asked if she may have these injections in her face as well. We have spoken about this for the last two years. Tamarin has been reluctant as the doctors have warned her that they may miss and inject a wrong muscle and paralyse a part of her face around her mouth and then she will drool until the injection wears out. But she has decided to give it a shot and is now starting a roll of MR’s and x-rays of her head and face region.

    I look foreward to follow your daugther’s progress on your blog. She seems to have “less” CP than my Tamarin has.

    Forsatt lykke til! :)
    With kind regards
    Merete Varner

    • Hi Merete!
      Thanks heaps for your kind comments and for sharing your story about your daughter Tamarin :)
      Botox.. yes, it’s a tricky one. I can see the benefits but is of course a little concerned about the risks as well… Not sure about Norway but in Sweden parents to kids with cerebral palsy seem to be very much against it so I’m feeling a bit torn to be honest.. However, everyone I speak to (doctors, physios, specialists, staff at TCCP etc) here in Perth all agree that Botox is working really well to improve the gait and reduce spasticity and has very few side effects. They are using ultra sound and other technics to inject the botox exactly where it needs to go and for that reason the kids will have to be under a light general anaestetic. Personally I would like to avoid operations and would love to skip Botox altogether and only use the Elektrodress in the future :)
      I understand that it must be a big decision for you guys to make with Botox injections in Tamarin’s face and would love to hear how it all goes! :)

      Kramar Hanna

  2. Hi, I’m Amelia. I’m 19 years old and I have spastic CP (which affects both of my legs). I’m currently in the process of writing a memoir about what it’s been like for me growing up with CP to spread awareness of CP and be an inspiration for families/other people with CP. Give that daughter of yours a hug from me. She’s a fighter (and that’s putting it lightly)! :)

  3. Greetings from Canada! I’m a physio student. I was just searching for something about cerebral palsy and stumbled upon your page. Just wanted to say that your site looks very clean, and more importantly, thank you for sharing your experience and story with the world! Take care

  4. För en snart färdig sjukgymnast med särskilt intresse i barnhabilitering och neurologi var det en helt fantastisk upptäckt att hitta denna blogg. Här kommer jag titta in ofta! :) /Linda

  5. Hi Hanna,
    I love reading your blog & learning more about CP and how to help my daughter. My daughter also has mild CP and speech delay, wears AFO’s. She will be getting her 1st botox injections soon in her lower legs.
    My daughter is 2.5 yrs old.
    I wanted to ask you where did you buy shoes for your daughter to fit over AFO’s.
    We have tried many shoes mainly from Betts Kids and they didn’t fit.



    • Hi Nina and thanks for your email!
      We mainly buy the cheap converse style canvas shoes from Big W for Cayla. Because they are very flat she is having a small wedge in each shoe to bring her heels up. Good luck with the botox injections but I’m sure it will all go well so nothing to worry about. Let me know how it all goes :)

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