I’ve spent the last week and a bit taking video of Jovie on my iPhone for the Rett Syndrome Video Study – something that’s right up my alley as I shoot a billion minutes of video a month, and don’t mind editing together a little video now and then 🙂
All 27 minutes (complete with titles & music, lol) is currently rendering and will be sent off to the Aussie Rett team today – I feel good about doing something to help Rett Syndrome research in Australia!
I just registered teamjovie.com so that will be a dedicated space for Rett Syndrome fundraising and events that I’m involved with, but I’ll still talk about RS and Jovie here
a little Jovie & mummy time before playgroup this morning – so good to have my camera back and feeling inspired to take some photos!
Rett Syndrome is an interesting thing.
One minute you can be reading up on things that are yet to present themselves in your daughter, and the next – she’s doing it.
Jovie has been hyperventilating and swallowing air for at least a year now, and I used to say thank goodness she’s not holding her breath. (Because it’s one less thing we have to keep an eye on..). But low and behold a few weeks ago, she’s started to hold her breath. Sometimes for a few seconds, sometimes a few seconds more that I’m comfortable with. Her belly expands to what looks like 8 months pregnant to me, and she arches her back to make her bump even bumpier.
I could probably take a better photo of her tummy pre & post inflation, but you get the idea. It’s big enough to stretch out her clothes.
She’s not distressed by it. Together with the air swallowing and hyperventilation, it’s just made her heaps gassier and she now can burp like a frat boy and fart like one too.
But it’s interesting how a genetic mutation makes your body do things like holding your breath or swallow air. In the same way my own DNA makes me short and my hair black, Rett makes you do things that you just can’t change.
