Max and the nasty Dravet Syndrome

I have had a very busy week with children. I had my sisters kids come and stay for a couple of days to help her out while they renovate their home. I have looked after little Alice who is 8 months old for a day, which I do occasionally to help the mother out. I have also had my brothers kids here for a day too. My brother and his partner have 4 children all under the age of 5 and as you can imagine it is not easy juggling them and work. That is especially true since my nephew Max has a sever form of epilepsy called Dravet Syndrome. Max spends at least a week in hospital every month after having a sever seizure. It is heart wrenching to see him suffer and to see his parents go through the emotional turmoil of having a very sick child.

I didn't know much about the Dravet syndrome before Max was born but have recently done a lot of research trying to grasp what it is and what kind of future Max can expect. You see Max is only 22 months old, only 3 months older than my little girl and he has developed alongside her. They still play and when he is good, he is really good, a happy, friendly and cheerful little toddler. It took him a little bit longer to walk and say words, but apart from that his development both mentally and physically would be considered 'normal'. It is the epileptic seizures that he suffers from that set him apart. The seizures can be mild and last a couple of minutes or sever and last for over half an hour with the medication not helping. That is usually when he ends up in hospital with various doctors trying to work out what concoction of medication will help to stop the seizures and what possibly could be done to prevent the more serious ones repeating.

It is hard on poor Max, his siblings and his parents. It is emotionally draining and a major financial burden especially when you have 3 other children to care for. Medicare subsidies a portion of the medication that he needs but not 100% of it, and he is on a lot of medication. The bad news is that after the age of 2 it actually gets worse. His development is expected to decline and he is likely to develop other forms of seizures that are even more sever. He will need special care for the rest of his life and his life expectancy is something we at home don't talk about. There is hope that he will get through to early adulthood and if his development, both physical and mental, continues to develop slowly, there is a chance that he will be able to lead a semi independent life in the future.

If anyone is keen to read more about the syndrome click on the link here. Please say a little pray for my little nephew and thank you for letting me share this story of a brave little man and my week.
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gorgeous Max at 5 months

My raspberry ripple disaster

I have been on the I Quit Sugar program for a couple of weeks now. I think I do feel a bit better, I don't seem to get the afternoon cravings as much as I use to and I think my skin is looking much clearer. The big bonus is that I also have lost a little bit of weight, not much but enough to make me feel like its working.

To be honest I haven't really craved sugar as much as I thought I would. I mean I think about it daily but my determination to be a healthier me is more stronger. The biggest lesson that I have learnt throughout the first two weeks is that so much of the sugar that I consumed I didn't even know was there. Sugar is everywhere and unless you make everything from scratches be prepared to have added sugar. The biggest culprit is anything classified as "low or no fat" or "diet", it is amazing the amount of sugar that goes into these products. They take out the fat and add heaps of sugar, and that is suppose to be healthy?

The whole process has made me re think my shopping list and I had to change the yoghrts I ate, the bread, the sauces (from salad dressing to katchup), anything pickled more or less had to go and even cans of tomato I needed to switch. There are a lot of sugar free products on the shelf which are still delicious but they tend to be more expensive. I find the process has been very educational.

Now about this raspberry ripple. Well in the book I Quit Sugar by Sarah Wilson, the raspberry ripple recipe is claimed to be their most popular and repeated. So after two weeks on the program I decided that I needed a treat, albeit a non sugary one, so I made it.

I must say from the start I was going into the recipe with a bit of scepticism. It involves a lot of butter and coconut oil, and I have never been a fan of anything greasy. I do think that I might have done something wrong because the one in the book didn't not look anything like my finished product. But you be the judge and have a look at the pictures below. And the taste, well it tasted oily and not really something I'll be making again any time soon. I think I'll just stick to the savoury treat recipes.

photo taken from the I Quit Sugar website

and my version

5 - The beach

I love the beach, I love summer and the heat is bearable when you can be immersed in water. I really do love it. Not that keen on sharks though or jelly fish and that is why I also love lifeguards. This picture was taken in Port Douglas on our Holiday. Great holiday spent mostly in the crystal clear waters of Queensland.