Eleven

Jovie turned 11 today – she’s growing up, that’s for sure…

I’ve had a quick read back over the blog archives here, and Jovie has gone through so much in her short 11 years so far.

Everything from her pregnancy, birth, newborn stage to the diagnosis and adjustment to a Rett life is here – I’m so grateful for that because I know I would forget things, and also because it might be helpful to someone out there looking for answers about their child, too.

So how’s Jovie at 11? She’s okay – she’s always happy, but she’s also sometimes upset (we don’t know why for sure but are working on pain signs on her eye gaze computer). She’s still having multiple seizures (drops) a day, and we are still working with her neurologist to see if they can be managed. (Also, she’s had the same neuro since our diagnosis which has been great).

We’re currently still self isolating at home (due to COVID-19) but all NSW kids are required to start back at school full time from next Monday, so we are headed out of our bubble, and back into regular life. Jovie hasn’t left the house apart from getting a flu shot about a month ago, and regular walks around our neighbourhood. I know she’s excited to get back to school though – her school has been making videos for the kids to watch (virtual assemblies etc) and she always perks up when I play it for her on the big TV.

Jovie is doing really well with practicing her eye gaze on her computer again. There was a huge gap in her ability to use her eyes (focus and track on things) because of her seizures, but she’s doing SO good lately.

We don’t know what’s instore for Jovie (and her brothers) but if we can keep looking forward to things, even the simple things, I’ll be happy x

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