Just looked back at my last post here and I can't believe it was posted back in August last year!! I can only apologise for my lateness or should I say laziness. So much has happened that I'll probably forget most things. Since my last post life has been a mixed bag shall we say, full of ups and downs. Basically, lost a friend in October, then my aunt also passed away on Boxing Day amongst many other things that have happened.
But I'm not going to get all depressing on you, so here's my good news.... in fact forget good and replace that with GREAT! On 10th February 2011 I had a beautiful baby girl Rebecca Grace. She was born full term, but weighed only 4lb 11oz. She was also born with Bullous Ichthyosis (aka EHK) like myself. She was in special care for 2 weeks in an incubator and I was in hospital for a week as I had an emergency c-section. We've had great support from the hospital team, given great contacts and lots of help. But everyone keeps telling me I'm the expert when it comes to our condition as I have the condition and live with it. I can understand their good intention with this comment but at the same time, I don't have the medical knowledge. I mean, it's one thing doing your own treatments and caring for the condition yourself, but when it's your child it's completely different. It's really difficult to explain what I mean.
Rebecca, like myself was red raw when she was born. But to cut a very long story short she is continuing to do well. Feeds really well and is continuing to put on weight nicely. Her skin is up and down, and she has had a few blisters but otherwise she is doing really well and I'm so proud of her. She's so bright and alert and is starting to take everything in around her and she's only 8 weeks old. Here is a photo of her at 7 weeks old:
Now, as a Mum to a young baby with Ichthyosis I have many questions and I still have lots to learn. I'm learning all the time. And no doubt as time goes on I will be writing about certain issues on here. Sometimes however, it's finding the time to sit and write thesedays. I will do my upmost to keep up with this blog though, in the hope it will help others, also to encourage other parents of children with Ichthyosis to get in touch if they would like to chat. Please feel free to contact me if you wish and I'll do what I can to help. It'll be great to chat to other parents who are going through the same thing. I'd really like to get in touch with any other Mum's out there who have EHK and also have children with the condition too, so we can share our experiences and help each other.
Anyway, that's me done for now, but I'll be back again soon. Before I go I'd just like to take this opportunity to thank all those who have been there for me recently, and to my friends for all their support, kind words etc it really means a lot to me and is most appreciated. Thank you all and take care xx
