Reality Bites

It has been quite awhile since my last post. I apologise for the shortness of it but I really had nothing to write as I was so angry, devastated and shocked. After being told Ava was focusing it was a pretty hard punch to be told that all the support she was getting for her focusing was to be cancelled and a much more specialised team of sensory vision experts would be involved as they felt Ava's vision was poor at best, none existent at worst.The sympathetic rub on the back and look of pity made me realise that this was very serious now. So what did I do about it? I went out and got as many sensory toys as I could to help switch Ava's vision connections on. A slinky, a sensory spinning fan, black and white patterns, pictures of Ava's mum, dad and sister on her wall next to her cot, spinning mirrors, even my fingers wiggled in front of her eyes can help make new connections to replace the damaged ones. I also went onto the RNIB website looking for tips on how to help a blind baby develop. I printed the information off and gave it to all family who come in contact with Ava, I did this because I want to help her as much as possible and if she isn't blind she will still benefit. It was interesting reading and gave very practical advice on how to help her develop her sight through sounds, and things you wouldn't have thought of like telling her you are about to pick her up. Imagine you are asleep and all of a sudden you are whisked up in the air without warning - pretty scary.I also resolved to set up a support group for children with epilepsy and visual problems - a task I shall be asking you all for help with in the not too distant future. Any ideas or suggestions on fundraising, becoming a charity and setting up support groups will be gratefully recieved - email jude at  jro_ling@yahoo.co.uk
A week later and the sensory lady came again as I had Ava on her side following the spinning LED fan, yes that's right I said following it. The relief in that experts face told me my little girl is not completely blind but it is a race against the clock now to try to get these connections switched on. I have trawled the internet looking for bright lights and sensory toys.A load of stuff is on its way. We have put a blackout blind up in her room so we can create a sensory type of room and have started going to sensory rooms and hydrotherapy pools at the weekend. I am joining the alansheareractivitycentre.com with my friend and planning a sensory garden for Ava, Molly and the family to enjoy. I hope to pick up some tips from the activity centre.
Ava has now been assessed by speech and language and it is thought she may be aspirating her food which means she is taking it down her trachea instead of her esophagus. We are awaiting a video barium x ray to show if this is the case but may have to wait up to 4 weeks to get it. She continues to follow the .4th centile for her weight and head size, and the 50th centile for her length. At 27 weeks she is 11lb 14oz - a weight gain of 5 oz since last week.
We took the girls to adventure valley on the 19th May for the last few hours of the day after yet another appointment. While we were there we met the new foal - Hope. He was born on Sun 10th April (Ava's christening day) and when he was 5 days old he had a mini stroke which left his head tilted to the side. The vets expect him to make a full recovery one day. As Ava was exactly 6 months that day we decided to adopt him for her and hope that they both continue to get well together.
I returned to work on Monday, probably not the greatest move of my life. I didn't realise how hard it was going to be to perform in front of 30 pupils 5 times in the day, pretending all was normal and well in my life. By Tuesday late morning I just broke down and had to be driven home, I had just had the news about Ava and her feeding that morning too. My councillor said to me on the Wednesday that I had hit rock bottom and the only way now is up. I really hope so. Unless you have been there it is hard to understand. I thought I was coping and I just got a reality check - I am so far from coping it is unreal!  My friends told me they wanted me to tell them how I am feeling to help them understand a bit better, maybe one day I can but its too raw at the moment. It takes me all my strength to give a news flash and even then its days until I can get my head round some more bad news and share it with everyone. At the moment we are still in the middle of our marathon hurdle race, and here comes another hurdle to jump.