Hello

I should start by introducing myself. My name is Katy, in September last year I was blessed with my beautiful daughter Jenna.

Firstly I need to acknowledge that all children are beautiful and all parents are lucky (and bias). BUT, it;s essential that anyone reading this, (hi mum), understands that Jenna truly changed my world, she saved my life. She's not just my daughter, she's my angel.

I'm not 100% sure why I've started this blog. A little bit for myself, to vent and talk. A little bit for my friends and family, to keep them up to speed. And most importantly for Jenna, hopefully one day this may be useful for her.

So about us. I'm a single mum to Jenna who's now nearly 5 months old. When Jenna was 7 weeks old she was diagnosed with a cortical brain malformation which we think is a rare condition called Polymicrogyria (PMG). The part of her brain we know if affected (there may be others, we're waiting on another scan) is the parietal and occipital lobes. Children with this condition can have a range of other disabilities, some mild and some severe. So far we know Jenna has a cortical visual impairment. This basically means she has fully functioning eyes, but her brain can not interpret what she can see.

Jenna suffers from two rare forms of epilepsy, West Syndrome and Lennox-Gaust. She has approx 20-40 seizures a day and is on a pharmacy full of medication (I'm sure you'll find out more about this as i continue to blog). This may sound terrible but every time i read about another child with Jenna's condition or just the epilepsy i hate to know that we're usually the ones having the most seizures. It's been three months and we've tried 5/6 different drugs. We're no lost cause and there's plenty more to try but Jenna. I hear a lot of..... "she'll grow out of it"..... "her brain will repair itself"......."her brain will work ok, it doesn't need all of it"......etc etc. I know sometimes people don't know what to say, I just sound negative explaining that she won't grow out of it, it's a part of her and something we're all working on to improve her quality of life. I'm not negative about this, Jenna became my angel even before she came into this world.

We're waiting to start portage, next month hopefully. We're also waiting on referrals for the visual impairment team, child development, physiotherapy, specialist health visitor, OT and a carers assessment.

Well that's where we are to date. I hope this makes sense, i could go on forever trying to explain the last few months but my little miss is hungry. Take care xxx