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 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!
It happens alot, each time actually.
“Oh but she looks so normal!”
It’s part of the campaign to educate people about Rett Syndrome, and possibly other disorders and situations too. You just don’t know what someone is going through, what they live with, what they’re born with.
I don’t take offence to it, because people don’t mean it or know what they’re saying. But I use it as an opportunity to tell them about Jovie, get them to meet her and to go away with a little bit more knowledge about Rett Syndrome.
It’s harder when I’m at school picking up Jasper, and people will immediately compare their 4 year old with my 4 year old. Instead of making them feel bad, I want them to know that while we have our challenges, we’re doing okay and not to feel bad for us. Life isn’t about comparison (comparison is the thief of joy), but I would just want people to know that families like us exist.
we love, like you love.
we live, like you live.
don’t be afraid to say hello and ask questions. be gentle with it, and we’ll be gentle with you