It's April, which means I've been a 'blogger' for a year, how exciting!
What has happened over the last year?
- Lyla had her PEG surgery
- I finished my uni courses
- We moved back into our own house
- We celebrated a 2nd birthday
- We went to Melbourne, twice
- Lyla's disability care moved to the new NDIS
- We have worked on new skills, like standing
- Countless hospital appointments
- Met new people
- Lots and lots of fun times & memories!
What hasn't happened over the last year?
- We still haven't found a diagnosis
It's a little bit disheartening, but it is not something that I let affect me. Of course I would love to have an answer for Lyla's condition and of course I would like to know what the chances are of the same thing happening again is, but I am sure an answer will come.
In the meantime, as it is April it's almost time to celebrate...
Undiagnosed Children's Awareness Day!
Friday April 25 is the day it falls on this year, well worldwide it is, in Australia it is Saturday April 26, but as it is not as widely known or celebrated in Australia, I am celebrating on the Friday with the rest of the world.
Here in Australia there doesn't seem to be much knowledge / support / research / information / funding / organisations / etc. focusing on undiagnosed conditions. How sad is that?
Lyla and I decided to do as many positive things as we can in April to celebrate and bring some awareness to UCAD, here in Australia. We started with trying to find someone or something that focuses on the undiagnosed - we wanted to raise some money that would go towards helping people find a diagnosis for children, but we couldn't find anything like that here! The next best option was to fundraise for the Women's and Children's Hospital Foundation so that is what we are doing. It is a place we spend A LOT of time and a place, that unfortunately, is very important to us.
Secondly, we made a video clip. It was a last minute idea I decided we had to do Tuesday night and I knew I needed my playgroup mums & kids to participate. So Wednesday morning at playgroup we filmed it and that night I edited it together. If you haven't already seen it I urge you to watch it, it's great and I am not just saying that because I made it, it truly is special!
Thirdly, I am spreading the word. I am using the video, the fundraising and Lyla's story to get the message out there. Undiagnosed Children's Awareness Day is just as important as any other celebrated awareness day, it just doesn't receive the recognition it deserves.
Lyla and I are going to change that!
** Lyla has her own Facebook group now, which is easier for me to update everyday life through, so for more Lyla news, head over to...