Thursday, 27 March 2014



As the week went on our Angel started getting better and better, the doctors were shocked at how much she was picking up. She just got brighter as the week went on and Thursday came round and the doctor came to us ad told us that they thought she could go home in a couple of day if she kept on the way she was going. We were so excited and I think I cried with relief. They kept doing blood tests on her and monitoring her but when Saturday came we were all packed up and on our way home. We were given medicine  to take home for the seizures and she had to take it 3 times a day. but I   thought I could handle that,  When we finally got home and walked in the door I cant explain the feeling I had, the relief and and the weight lifting off my shoulders. We settled back in to our life really easy after that horrible time. We carried on giving our Angel the medicine for a few months and then doctors decided it was time to take her off it to see how she coped without it and by the end of June she was off it completely  and up to this day she hasn't had any more seizures. We have been told that chances are she will never have another but they cant guarantee it. its a waiting game, we have been told she will always be classed as being epileptic.  over the past year we have gone backwards and forward from a number of different doctor appointments. Fingers crossed for her that everything seems to becoming back normal and good. we have not been given any news to worry about.
 Im very happy to tell you all that things haven't been so bad since, My Angel continues to have problems with her skin, Blisters and pigment marks and now seems to be developing eczema. She has bald spots in her hair and some very frizzy dry patches but these things are nothing to worry about and can be sorted or a way to cope with it can be found by the time it matters to her.. she seems to have trouble with her immune system and she finds it hard to regulate her temperature but these have not yet been diagnosed by a doctor as the doctor said she is to young but he will keep an eye on it and see how she goes. . Her physical development is a tad slow but nothing to worry about, but on the plus side her mental development is above average.  she doesn't seem to have problems with her eyes or teeth which for IP children is rare.  I class my Angel as being very lucky because the more I learn about Incontinentia pigmenti things could be a lot worse then what they are, and I know  some parents who are going through my worst nightmare and I really don't know how they do it. They are all my heroes along with there amazing IP angels.

What does the future hold for my Angel. Well no one really knows. chances are thery could stay the way they are or they could get worse. the only guarantee for her is that she is going to  have to deal with this rare genetic illness for the rest of her life. I'm very determined that she isn't going to let it stop her from doing anything she wants to do. She is a fighter and always has been since she was born. and im determined that she is going to continue to be a fighter.she is beautiful in every way possible and that's what I tell her everyday.She is going to have to visit a lot of doctors in her life but that is the price im willing to pay for her being healthy and happy. and we will take the next step in our journey when we come to it. for now im going to enjoy her for being the happy smiley baby she is.

I just want to  thank everyone for reading this, and I really hope it helps to let anyone who is going through what I have that your not alone. there are others out there who know what your going through.
Id like to also like to thank everyone over at the facebook page Incontinentia Pigmenti World Community  for all there help and support of the last year.  I will post any more news that I have for my Angel as and when it happens. If anyone has any questions please feel free to contact me or anyone over at the facebook page. you will also find some other useful information on our contact page.

Ssusie. xxx

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