Saturday, 27 July 2013

Mobile Phones

This morning is a morning I somehow feel that a bed would be my best friend. I of course had a day of relaxation when I went to my parents last week and because I put my guard down so to speak I have now got a cold and the underlying feeling that a chest infection is on its way :-(
 
So shortly I will go back to bed for a little more sleep.
 
I did have the chance to enjoy my afternoon out last Saturday, which was great :-)
 
There was one thing that really did surprise me when I was out, the reliance people have on socialising on their mobile phones whilst they are out with friends. I am one for always having a mobile phone on where ever I go as I have to be in phones reach if my Cheeky Boy goes into having a seizure whilst other people are looking after him but I was taken back by the desire people have to be of their phones checking and chatting on Facebook etc. instead of actually talking to the people right in front of them... I saw a couple out for lunch and the young lady instead of actually talking to the gentleman in front of her, she had her fingers working faster on her phone!

Perhaps I am a little old fashion about this...

As for the Cheeky Boy and his hospital visit, he has had some improvements in his readings for his EEG but of course there is the side effects of his drugs that is of still major concern for me and our family. Amongst these, he has been suffering from laboured breathing and is still irritable and not quite sure what he wants - this makes it difficult not only for him but for those around him trying to help him...
 
We are now in the process of reducing one of his medications gradually, lets hope he's seizures don't increase. Fingers and toes crossed that all goes well and we can see a reduction of his side effects.
 
Can you believe another month has almost gone! Next weekend I shall be taking my RozArt work to the Hartley Lifecare Hall Markets again. I hope I am feeling well enough and the day isn't too cold :-)
 
Time for me to find my bed... I hope you all have a happy week with much laughter :-)

Saturday, 20 July 2013

Dr Seuss

Today I am going to have a day out with some friends on a rare time-out for some fun :-) Sometimes it is needed to give one a chance to remember what it's like to be yourself, especially when so much of ones time is dedicated to others both day and night.

Here's a little wisdom from Dr Seuss that I think is so true...



The past week has been quite hard for the Cheeky Boy with the latest change in his medication and it has been hard to watch him go through it. He has spent the majority of the week walking around like a little zombie as the medication slows his brain waves down to stop the seizures. The end part of the week he has been restless, not wanting his favourite foods and wanting to lay down for a sleep and not being able to settle. It has not only been heartbreaking for me to watch him over the week but also for those who know him well have been upset by his zombie state :-(
 
Fortunately this has improved over the past couple of days but he is still going through side effects, at least he is becoming more his usual cheeky self. We shall see his neurologist in Sydney on Tuesday for another EEG, so lets see what comes from all of this.
 
As for my RozArt work work, I have been finishing off orders from last week and I have had the unfortunate closure of my website for a few days as there has been an virus attached to it, if only the people who came up with these things used their brains and energy for good!

Well I best be off, I hope you all have a great week ahead :-)

Saturday, 13 July 2013

Joys and Worries

It's been a week of much work and my RozArt stall at the Hall Markets was a great success for my first time there :-) I have a few creative orders to fill which I enjoy as it gives me a chance to create something new and ultimately something that the client loves :-) The weather was lovely when the sun was out but when it hid behind the clouds and the wind picked up, it was a little chilly to say the least!

 
The nice thing about doing markets is that you meet lovely people and stall owners who enjoy being there and enjoy what they are doing. It's always nice to go to a new place and feel welcomed by all of those around you :-)

On the home front, my beautiful Cheeky Boy has had another trip to hospital after a group of seizures. We were able to come home that night but he has had an increase in his medication once again and unfortunately he has been extremely tired and is still having absent seizures mixed in with his 'nods'. It is heart breaking watching your child go through these things especially when you know he is not his normal cheery and cheeky self... I am hoping after a few more days of being on this increase of medication his body will settle enough to let him get into his usual level of mischief.
 
If this medication increase doesn't help him we will be putting him back on steroids for a period of time just to help give his little body and brain a bit of a break, we hope! The problem with the steroids is that they make him extremely thirsty and hungry. With this comes the huge number of nappies we go through (at least 10 a day) and the poor boy gets quite demanding when the food doesn't come fast enough because of the increase in appetite. The steroid they use is the same one they use for children who have an asthma attach, the only difference is that he will be on the drug for a longer period of time.
 
We are on the waiting list to do a very special diet which can help some people with bad seizures control them to a point where some do not have them anymore. I will talk more about this diet at another time.
 
Now for a mention of a book called the "The Woman Who Changed Her Brain" by Barbara Arrowsmith-Young. This is an inspiring book and worth a read if you have an interest in or know someone with a brain injury. I have read the book and seen Barbara speak when she come to Australia for the first time last year. For those of you here in Australia and New Zealand she is coming back once more and if you wish to she her speak her upcoming events from August please click on the follow link: http://www.barbaraarrowsmithyoung.com/events/
 
Well on this positive note, I shall be off :-) Have a beautiful week ahead.
 

Saturday, 6 July 2013

New Adventures

With the cold of Winter here, I am hoping tomorrow is going to be a nice day in Canberra as I am to be doing my first ever RozArt stall at the Hall Markets which for those of you who are not familiar with these markets, they are the largest outdoor markets in the Canberra Region. The Hall Markets are run by Hartley Lifecare who work and provide support for persons with disabilities. So I am hoping to work up a client base leading up to Christmas and have a great deal of fun whilst I am at it :-) So if you are in the Canberra Region, please come and say hi :-)

A picture I took last week of a 'beautiful' foggy morning in Canberra
(it's about 11am and 3 degrees Celsius)
 
I don't mind a cold winters day here when the sun is shining but the foggy days do chill you and those days when the wind is blowing from the Snowy Mountains... brrrrrrr
 
Lets see what tomorrow brings!
 
My Cheeky Boy has had a mixed week of health. He has had more random drop seizures which has caused him some superficial injuries to his face. The one thing that has had to be changed is the handles on the kitchen cupboards and draws. These would be fine if my little boy wasn't prone to hitting his head on things by accident. The handles have sharp corners on them so they have had to go.
 
I had a visitor come this week and they said something that is true for us: "it's the things that we take for granted and we would never think of causing problems, you need to think of"
 
The 'small' things that are often taken for granted are not here, even the good things :-) This week the Cheeky Boy noticed for the first time ever what the other kids in his Gymbaroo class were doing and he stopped what he was doing to do the same thing as them! That was to come back and lay on the mat on the floor. This may sound like 'not much' but to me it was a celebration as taking notice of his surroundings and then following others is something he hasn't done before, so exciting!!!
 
So here's a picture to finish my entry to make you smile and think at the same time...nothing like multi tasking :-)
 

Have a nice week :-)