SOME DOWN TIME

The last week has been much the same with Oscar and Harry. Long itchy nights and if Harry isn't eating he's usually crying! I am working hard to make sure his wrists, hands and feet are bandaged as much as possible throughout the day and night to prevent further damage to his skin. Harry's very good at managing to undo the bandages so socks also get put over his hands. Sometimes he will happily tolerate this and other times he will try and scream the house down in frustration wanting them off to get at his skin. I have just figured out a way today to stop Harry from getting to his stomach. We had previously tried safety pins to keep his all in one singlets from being popped open but he pulls so much his singlets end up with holes, however I turned his wee pyjama suit around today so the zip is at the back, why hadn't I thought of this earlier?! He will be dressed like this 24/7 from now on. Harry is six weeks steroid free and other than the first week, the last couple of weeks seem to be the most challenging. Tiredness is kicking in for Andrew and I, as we can't see any visual signs that Harry is healing so it's groundhog day and night caring for him feeling like everything we are doing isn't helping his wee body. Andrew and I feel defeated. Perhaps Harry needs to be on immuno suppressants too. As I write this though my competitive nature kicks in - Let's wait another week, maybe we will see some signs of healing soon! Actually Harry did have a brief moment last week where he woke up with white legs and a white stomach.  It only lasted a couple of hours before he was flaring again- he has been in a constant flare since then! I really should stop being so negative and take that as a wee win! I am thankful also that Harry's face seems to be better than the rest of his body. His wee legs are definitely the worst.

Oscar has quite a bit of eczema on his body at the moment. As of next week we will be strictly living off meat, fruit and vegetables and rice for a couple of weeks. Some foods have sneaked back into our diet that need to go again. We do eat healthy but the odd lollipop, ice block etc will be eliminated along with soy again for Oscar. We have slowly reintroduced soy but I'm not convinced he's fine with it. I will need to do a meal plan of some kind to get my head around it and be organised with food for everyone's needs! The doctor has said we can try Oscar on 3 mg of diazepam as 2 didn't help at all. We have tried this only once and it still didn't help him to sleep! 

Last weekend Andrew and I got some well needed downtime. My family came up for the weekend and Andrew and I spent Saturday night away in Queenstown. It was so lovely spending time together. I forgot how easy it is to get in and out of the car without children! We both managed to have a good sleep from 10.30-7. This equates to roughly three nights worth of sleep for us. It was so strange waking up next to Andrew. I can't even remember the last time we slept in the same bed all night long-well over a year ago! In a way it was reassuring to hear the boys (other than Charlie) itched most of the night too. It's not just in our heads! Our wee break away will keep us going until the school holidays in a few weeks time. Andrew and I will be able to give each other a break throughout the day to snooze and having both of us here to care for the boys will lighten the work load for me, especially caring for Harry's needs.

I enquired about respite care yesterday. Eczema is classed as a personal health issue not a physical one so of course we don't qualify for this. It was suggested our doctor refer us to a social worker at the hospital who may be able to sort out some respite care for us based on a child having a chronic health condition however the condition needs to be very high needs. Guessing we won't qualify for this either and by the time we actually get an appointment it will probably be half way through next year! Why is severe eczema not seen as a serious debilitating condition? The impact on our family has been huge. Loss of income, our mental state, in fact I'm not sure how Andrew and I have managed all these years on the sleep we get. I'm pretty sure many families would have crumbled by now.  We will keep going, we will keep living in a 24 hour period until we get through this. I yearn for a 'normal' life again. I won't give up on the prize-  Having three happy healthy itch free boys... And sleep for Andrew and I again!

On fire!

Itchy..

More itching

Clothes on backwards!

Ouchy legs