TEMPTATION

This has been the only time where I really have felt like chucking all this in and resorting back to steroids. Andrew and I are exhausted. We are living in a haze and our brains just aren't functioning properly! We forget things, I often find things in the fridge that should be in the cupboard and things in the cupboard that should be in the fridge! We have no energy and I'm very sensitive and emotional about everything...Actually Andrew is too! Harry's wee skin is an absolute mess, it was a mess anyways but on top of everything he has had a reaction to emulsifying cream that I used on him a couple of nights ago. He barely slept all night and in the morning I got him changed and his top was blood stained all over and his wee body was burning. I feel terrible that this has happened to him. Harry is tired, irritable and for those that know him, he has an ear piercing cry that literally hurts your ears! Andrew said last night he thinks he's going deaf! Harry is just feeling lousy and as we are feeling low in energy it's not a good combination.  As soon as he sees me getting ready to put his creams on and he jumps up and down crying saying "Ouchy". He doesn't even want to go in the bath anymore. He's also saying "Cold" a lot and wants to sit on the couch with a blanket. Consistent symptoms to Oscar!
It's quite timely that I have been in contact with a lady last week who is also going through topical steroid withdrawal. Her mother used steroid creams on her from the age of three and around the age of 19 through to 30 she was using stronger steroids. Her Mum, like us had no idea the damage topical steroids can do to our bodies. She commented that our boys are lucky we are helping them now at a young age and she wished her Mum had done the same for her when she was little. I have this in the back of my head, that we are getting it over and done with saving our children from more pain in years to come. I only wish Harry didn't have to suffer like this! Hopefully he will be feeling better in a couple of days when the reaction subsides.

Oscar's skin isn't the best right now either. It's upsetting to see his skin deteriorate with the itching that he does. The itch scratch cycle does so much damage. It seems nothing consistently helps him to sleep. We have tried another sedative and he was still awake all night long. He is still coughing after two and a half months. His immune system is obviously struggling to get rid of it.
Gosh this journey is one hell of a roller coaster ride that can change so quickly depending on how the boys are feeling at the time, the amount of sleep we have had and how strong we feel mentally.
Chocolate, coffee, beer and wine are always on hand to help us through the harder days!

Harry's bloodstained top

Reaction from emulsifying cream

A chunk of skin hacked by Harry scratching 

A bit blurry but Oscar's bottom and legs!