Thursday, 17 July 2014

Heading Towards A Year Steroid Free!!

Life has continued to be busy and I'm pleased to say that Amy continues to make great progress.
Amy is now heading to her first year anniversary of being steroid free and she looks amazing!
Obviously she still is very up and down but now has lots more up's.

I know I haven't updated for a while and I apologise for that but we have had lots going on.
Amy has been going into school for about an hour a week but her main education still remains with her home schooling with her tutor from the education support team for medical absence (ESTMA).  We are aiming to slowly increase the time at school in September (after the summer holidays).

Amy is healing amazingly, her skin has lots of clear patches and although she still gets hit with the itchiness she now has big breaks between them and can enjoy time where she isn't ripping her skin to bits.  She can now get into a bath without screaming, though she can't stay in there for long periods and it still stings, she no longer finds it completely unbearable.  Clothes are still a bit of an issue, finding things that are comfortable is still quite difficult.  The summer heat is also being a little bit of a problem as it will make her have mini flares and she'll become quite uncomfortable so keeping her cool is a must at the moment.

I'm pleased to say that Amy hasn't suffered from any more skin infections for a while now and our recent appointment with the dermatologist proved fantastic with him being very impressed with the progress her skin has made and has even left us with an open appointment for the next 6 months with instructions to carry on as we are and return if Amy flares badly and requires further treatment.  But overall he was very pleased with how her skin was healing.  He has advised that Amy continues to take the vitamin D seeing as it has helped.

We have also returned to the paediatrician but nothing further to report there.  We ended up seeing a different doctor who knew nothing about Amy's medical history and we ended up repeating everything from our last appointment and came out with no further information.
Amy has got to stop taking the vitamin D for a couple of weeks to allow for further blood tests and then we have to return back to see them again at the end of September.  Obviously we will continue with the recommendation of the dermatologist in Amy taking the vitamin D after her blood tests.

I haven't taken any more skin progress photos recently but I will do some when Amy hits her year anniversary at the beginning of August and will update again then with them.

On the 6th July Amy and her sister Leanna took all our breaths away when they got to be flower girls at their uncles wedding.  Needless to say that both girls looked beautiful but we were all a little glossy eyed at seeing Amy look so well and actually be able to take part when only a few months ago we weren't sure if she'd be well enough.

Here is Amy, looking amazing.

And there is that cheeky smile!!!

11 months ago I wasn't 100% sure that we were doing the right thing by stopping the use of the topical steroids, I wanted to believe that the doctors wouldn't have prescribed something that would be so harmful to my little girl (or to anyone else).  But now I look into Amy's eyes and even though the past months were a living hell and she still has days that are hard to deal with and yes she still has a journey ahead of her till she is completely healed we know that it was the right choice for her and we know that even though she isn't at the end of this bumpy journey, there is light at the end of the tunnel and she will get there.

Thank you to everyone who has been and continues to follow our blog and Amy's journey.  I will update again soon with Amy's year anniversary progress photos.



  1. What wonderful news! Her skin is looking fantastic. I hope she continues to improve without too many flares - she's come a long way :) Louise xx

  2. So happy for Amy! We are in month 7 and had a short break of the flaring only to get another flare just recently. We have started to be able to take our daughter to classes and activities! So exciting! We have been using Aurstat and that has helped.
    Big hugs to you all!