20th March 1997
I woke up this morning at 4.15am until 5am and then went back to sleep until 6.45am. I am determined to crawl soon! I ate a big bowl of Nana Mags’ chicken and rice soup today. My cousin Jade is sleeping in my room tonight – I was in bed at 7pm.
20th March 2017 (From Sister’s Perspective)
This morning Connie woke up and we noticed that her eyes weren’t ‘normal’ – they seemed to be glazed over and rolling around. We kept a very close eye on her but nothing else seemed to happen and we got her up and out of bed for breakfast soon after. Mum and Dad decided to keep Connie home from college today until everyone was updated with what had happened at the weekend.
Mum rang to speak to Connie’s neurologist but he is in holiday until the end of the month so a specialist nurse organised to call us back. Mum also rang Rett UK for any advice they could give today who were very reassuring and rang the doctors about Connie’s medication. The specialist nurse rang in the afternoon and decided to up Connie’s medication that she has recently started taking to prevent seizures. The medication can have some bad side effects but we will just have to wait and see what happens with it. She said we will be called for an appointment with the neurologist in April.
After the unusual eye behaviour this morning, Connie seemed to be okay today and was desperate to be out and about so Mum took her to Tesco and to pick her cousin Evie up from school. She did get very tired at about 5pm and asked for a sleep on the sofa but she never actually slept – typical Con! She is sleeping with Mum again tonight but I have come up with the genius idea of setting the two iPads up on FaceTime so that we can watch Connie in bed from downstairs – it isn’t a permanent measure but it gives us some peace of mind! It worked perfectly … a modern day baby monitor!
As long as everything is okay tonight, it will be back to college for Connie tomorrow and she is looking forward to it – swimming at Holgates!