Hello!
Before I start this very detailed and probably long blog post, I have to apologise for the lack of posts over the past few weeks. I am sorry I haven't posted for a while, I have been busy and tired but hopefully this post will make up it as this is a huge update about my life! Anyway, let's go on.
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| Born at 29 weeks |
First of all, I like to thank the people who have got into contact with me regarding this blog! It has been lovely to hear from you! If you wish to get in touch with me whether it's with a question, idea or just to chat please refer to the 'contact' tab! I look forward to hearing from you :)
Well, what a busy few weeks I have had! I don't know where to start. It's Cerebral Palsy Awareness day! Approximately 17 million people worldwide have Cerebral Palsy, it is so important that we raise awareness. Even though 1 in 500 babies are born with Cerebral Palsy, the majority of people probably don't really know what the condition entails. It is our job to raise as much awareness as possible therefore people will become more educated and less afraid of becoming friends with someone with CP.
Last week, I began doing full days at school which was such an incredible feeling as I hadn't done a full day since December 2016 so this was an amazing achievement even though it may seem small! I have now done 7 full days and yes I may be tired but this has been my goal since Christmas so I honestly couldn't be happier!
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| EEG Camera |
My anti-epileptic drugs seem to have taken a really positive affect over the past few weeks and my seizures have been dramatically reduced, I have gone from having seizures several times a day to once or twice a week, this is a huge achievement and I definitely am feeling more positive. On Wednesday, I had a 48 hour home EEG, ECG and video. This meant that I had 25 electrodes glued onto my scalp to measure my brainwaves, 2 wires attached to my chest to monitor my heartrate and breathing and a very high-tech camera with infrared to film me 24hrs a day. I had to go up to Poole three times; firstly to have it all fitted, secondly after 24 hours to get the batteries changed and the data synched and lastly to get it all removed and to make sure the data was safely downloaded. I had one seizure during the test so hopefully now they have captured that, they will be able to give my family and I more information and a firm diagnosis. So now, all I have to do is wait as it will take the medical professionals a few weeks to work through the data and understand what is going on inside my brain! I have an inpatient EEG, ECG and video booked for Monday 10th April so if they don't get all the information they need from this test, I will be admitted for five days and they will try and capture more and different seizures.
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Splint cast
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On another topic, I had an orthotic appointment a couple of weeks ago and I am getting two new AFO splints (for my feet, ankles and legs) instead of just the one I have for my left foot at the moment. I am also getting a new pair of orthopaedic shoes as the soles have started falling apart on my current ones. For people who have never had splint casting done before, basically it is the same as a plaster cast which you would have for a broken leg apart from they are removed and used to mould my splints so they fit my feet correctly. I have had AFOs on and off for my entire life but I haven't worn two since I was about ten so it will be interesting to see if and what difference they make to not only my walking but my pain as well. I chose purple for the colour of course!
Thank you for reading this awfully long update post, I hope it didn't bore you too much! ;) By the way I am about to hit 4,000 page views which is absolutely amazing and it's all down to you guys, my readers so thank you!
I hope you enjoy the rest of your weekend,
Evie :) x
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