Archive for the “rett syndrome” Category

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.

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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.

Jovie’s Rett Clinic appointment!

Posted on August 19th, 2013 by Tracey

Jovie’s visit to the Rett Clinic at the Children’s Hospital at Westmead was on Friday – it’ll be an appointment we’ll attend every year, forever basically. It’s really great to have such a great team that can answer my questions and also spot things that are common with Rett. We love our regular GP, but having access to Dr Ellaway and the therapists there is such a great resource because they see girls with Rett all the time – it’s their speciality :)

After doing a mad rush to get all 3 kids ready before 8am, leaving Miles with Grandma and dropping Jasper at school, we navigated the morning peak hour traffic (horrific) but got there with a few minutes to spare – phew! (Though I should say, we feel lucky that the Rett Clinic is within 20 minutes of our home – I know families that travel by plane to get there).

We didn’t have to wait long (yay) before the team of therapists took us down to the play room to do an hour of therapy before our Rett Clinic appointment. There was an occupational therapist (OT), speech therapist (ST) and music therapist (MT, I guess? lol). We’d never had music therapy before – but Jovie LOVED IT. At first she didn’t know what was going on – all these new people – but she loves her music so it didn’t take long for her to warm up to it.

The MT was awesome – she’d play guitar and get Jovie to help strum. The OT would help position Jovie – and we learnt that holding one arm (gently) to her side, would encourage her to use the other arm/hand to play! The OT gave us an arm splint to use since it looked like it could come in handy (it did). The speechie would jump in there and help Jovie communicate a little better with what she wanted to do next (cymbal, drum, piano, dancing or nothing). As she was doing that, I had some great talks with the OT and ST about any issues and how we’re doing. I have a big note written down to follow up on getting the paediatric stroller for her soon, then a hi-lo bed and a hi-lo chair for mealtime.

Before we knew it, the hour was up and we went over to the Rett Clinic room.

The Dr was there, aswell as the Nutritionist and our super amazing Genetics Counsellor (who has seen us through all the Rett Syndrome stuff aswell as the CVS & Amnio I had with my last pregnancy). Again, to be in a room with people that just ‘get it’ is comforting – and Jovie was super happy to see them too!

Her checkup went well – no scoliosis, she’s eating healthily, sleeps well (for now, haha), and is doing pretty good generally. They were worried about her stomach bloating though – Jovie swallows alot of air and holds her breath but her stomach doesn’t seem to ‘deflate’. So she’s had some blood tests for lactose intolerance and coeliac disease (familiar?) – we won’t get the results for a week or so but have started on a lactose free diet just to see whether that will help.

After meeting up with Regan (he works in Westmead and happened to have a half day) and getting Jo’s blood taken, we set off home so we could pick up Jasper & Miles. A slightly busy day but an interesting one!