It’s been a while since I’ve written a post and a lot has changed for Aiya in this space of time. Aiya is now much more ‘present’ in the world. Whereas once she would not have noticed the world around her, she is now actively participating and trying to get familiar people’s attention. She’s finding playing fun and funny, she’s a lot more demanding of my time and she’s using her magic to manipulate me more than ever. Conversely though, Aiya is getting more and more frustrated as she struggles to communicate her needs to me and those around her. Cognitively she is not ready for sign language but we are trying to slowly introduce this into our daily routines to help her understand concepts like ‘finished’ and ‘more’.
The big change for us all is that Aiya is starting nursery. She has only been left for an hour at the moment, but we are aiming to build up to a few hours twice a week and trying to get her to sleep there too. It will be a big adjustment for me but I will keep you posted on how we get on.
Aiya is still not sleeping through the night, although we seem to be in some form of a sleep pattern and have a daily routine which is a step ahead of where we were a few months ago. She goes to sleep around 7:30 pm, wakes up at around 1:30 am for a bottle, stays awake for about 2 hours and then goes back to sleep around 3:30 am. She then wakes up in the morning at about 8 am. This may sound painful but up to about 3 months ago she was waking up every 2 hours. Another reason why I haven’t written in a while is that the long term sleep deprivation has fried my brain cells and I’m running on empty. If I can string together a sensible conversation these days I’m doing well.
We have also introduced a few new foods into Aiya’s diet over the last few months: rice, oats, cooked soya, gluten free bread and dairy free yogurts which have all helped Aiya come along in her ability to feed, along with a few teeth finally popping through. Aiya would only eat puréed food up until now, as like a baby she would not know what to do with the lumps and start to choke. Now she is eating textured food, all helped by the motivation to learn how to eat chocolate.
Next week we’re going in for a EUA (examination under anaesthetic) and a MRI which needs to be done under general anaesthetic. The EUA is to see if Aiya’s hip can be reset without surgery. We don’t know if this will work, but if it does she will be in a cast for a minimum of 12 weeks with up to a 6 month recovery period. If we end up going down the surgery route at a later time, the recovery period is a lot shorter at around 6 weeks. The MRI will check for any sinister brain formations, the general development of Aiya’s brain and check her auditory responses to see if her hearing has improved. Pray that this all goes well without any complications and I promise not to leave an update so long next time.
Project Aiya 
She is doing amazingly well and so are you Mum! I will pray all goes well with her latest tests 🤞.
LikeLiked by 1 person