Archive for the “rett syndrome” Category

2019

Posted on June 18th, 2019 by Tracey

And just like that, it’s 3 years later and I haven’t updated the blog. LOL. Tale as old as time…

Just a quick update, I figure that I have been keeping this blog since 2001 (that’s freaking 18 years!) that I would love to keep it going for our family history sake.. I mean, how many 18 year old blogs do you know of??

Granted, I haven’t blogged in 3 years but sssh, we’ll just say I was in a blog coma and now I’m coming around .

Jovie
Jovie turned 10 this year! OMG. We are so proud of her in so many ways — she’s still having daily drop seizures but is recovering well. Over the last few years she’s had a terrible time with her epilepsy (that comes with her Rett Syndrome diagnosis), there were many emergency trips to the hospitals, lots of different medications to help manage them — we had a wonderful 11 month period where the seizures were well controlled but they always tend to creep back in. She’s just chopped off 14 inches of hair to donate to Hair With Heart – she’s growing up and we are just happy to be where we are right now.

Jasper
Jasper is going to high school next year!! He’s done alot of growing up over the last year aswell. Regan took him back to the States for a month, to visit his family and vacation with his Grandma Sharon and Uncle Rian. Jasper also went on his first school camp — I’m really proud of him taking more responsibility and it’s been so awesome to see his bond with Jovie (and Miles of course) grow. He’s 12 this year and is obsessed with Nike and Fortnite.

Miles
Miles just turned 6 and started kindergarten this year. Big changes for our little boy but he’s adjusted so well, loves school and wants to give things a go. I love seeing him learn how to read more fluently – it’s exciting for him too! He still is obsessed with Godzilla and still is able to entertain himself for hours with his toys. He’s a funny little guy, with a big heart.

Regan and Tracey
Regan and I celebrated 15 years of marriage this year (January!) and are still going strong 🙂 He’s working in Dental at the moment but is looking for a career change so who knows what will happen in the next year! Me, I’m getting back into photography slowly – I am still Jovie’s carer and (on days like today) am the one who stays home with the kids when they’re too sick to go to school (darn winter germs!). But I’m excited to meet more people through photography again – if you’ve read back through my blog, photography is always something I return to as a creative outlet.

I have also been a licensed Wellness Coach for the last 2 years, which has been amazing. I love extending my knowledge and advice to others about navigating anxiety and also additional needs parenting and just LIFE in general.

I’m also a podcaster now – This Quote Changed My Life – a podcast about inspired action. I have been creating IGTV videos (instagram TV) but I felt like just audio would be fine LOL, so creating a podcast has been amazing and fun.

On a very personal note, without TMI, I have discovered this year that I am already perimenopausal. Maybe it’s the stress but it’s just my plan to go through it early (I’ve only just turned 38, and have been experiencing symptoms for 2 years). I am happy to have some tools to manage my symptoms (have seen a gyno and haemotologist – oh, I also have Von Willebrand Disease! lol. So much as happened!). Today, I am happy with where I am and I can actually start planning life and work and fun again.

Rett Syndrome is always going to be something that I am talking about because it’s forever a part of our family now. If you have found me via a Google search for Rett Syndrome, reach out – I am more than happy to support you. Maybe leave me a message via my Instagram @traceytakesphotos because the spam on this blog is CRAZY. I am so glad that I wrote down everything I could about the early years with Rett Syndrome and Jovie, because it seems so far away now. If you can get something out of my experience, it’s all worth keeping this blog going for as long as I can.

So that’s just so far in 2019.
I hope you’re doing awesome too x

just do it.

Posted on February 9th, 2016 by Tracey

Typically, I have been sitting here for 2 hours TRYING to get some blog stuff done, but have done nothing so far. LOL.

Jasper & Jovie are at school and Milesy decided to go to Grandma’s today – which gives me about 4 hours of ‘me time’ and I choose to sit and procrastinate like a pro. I have big ideas of updating my blog theme and then blogging about something interesting and fantastic – but nope, I’ve had 2 cups of tea and read Facebook about 5 times over. But that’s a good thing, isn’t it? Time for your brain to just do whatever it wants.

I stopped blogging over a year ago because things just didn’t seem interesting in my life – when in fact, there was tonnes going on and I just wanted to keep it to ourselves for a bit.

Read more on “just do it.” »

Team Jovie 2013 kicked butt!

Posted on October 30th, 2013 by Tracey

Another year of fundraising for Rett Syndrome research in Australia is over! We completed the Rebel Run Sydney on Sunday and raised $1,655 in the process 🙂

I am so thankful for all our family and friends coming together for Team Jovie – I still feel a bit crazy busy but it meant alot to me that we did it together.