Hello world. Yes I know it’s been far, far too long and I do feel terrible that I have lost my blogging mojo but I’m back, it’s back and we are back (I hope!!).
So where have we been and what have we been up to I hear you ask….
Well December and Christmas 2018 was the craziest yet. We had family visiting from Australia so we tried to spend us much time together as possible. We managed to squeeze in a trip to Hyde Park Winter Wonderland with Nanny and Grandad Dylan, a Visit to see Santa at Thursford with Imogen’s best friend Lucy and we also went to see Disney on Ice in the New Year again with Lucy and her family. Needless to say we had a pretty exhausting but magical Christmas and New Year.
So far 2019 has been a little challenging. In so many ways things have moved forward in a positive way, in terms of Imogen’s treatment response. Her eyes have responded very well to the drug Humira and she has recently been able to stop the steroid eye drops which has been fabulous, she still can’t believe she doesn’t need them bless her.
However we are having a lot of other issues to battle with, she has been struggling with nausea and fatigue following her injection treatments on a Friday, meaning some weekends all she wants to do is be at home in her ‘safe place’ and struggles to eat. Although with some help from the hospital we have adjusted how and when she takes her folic acid and this seems to be helping. But she is also struggling with her emotions and anger, which I can appreciate may well be linked to what she is going through, so we are keeping an eye on this.
Anyway it’s good to be back and I will have more to tell you soon enough I’m sure.