ANOTHER WEEK DOWN

It has been incredible to see the change in Oscar over the last week. Obviously his skin has has healed immensely but in terms of his energy levels and the way he is feeling within himself we have really seen some positive signs. The first being he has started talking back and being cheeky! He has the energy for this and it is so great to see him behaving this way.. I will probably disagree with this as the novelty wears off! He comes home from school wanting to play. Beforehand it was clothes off, sitting on the couch wrapped in towels watching t.v.  His body is adapting to the drugs thankfully. It has been so upsetting to see him with no energy. I was very worried that he would be like this the entire time on methotrexate. Sunday is usually his down day where he's completely wiped out however last Sunday was a normal happy day for him so fingers crossed this continues. We have tried the sedating antihistamine that the specialist gave us but it doesn't seem to do much. I didn't expect it to. Oscar has had a flare up this week and I think too much soy could be the reason. This is the worst his skin has been in two months. Compared to what it previously would have looked like, we really cant be complaining!
Two nights ago the Sloan's got barely any sleep.. Even Charlie woke four times! Yesterday was a blur. I don't know how we get through those days! I gave Oscar one of the sedatives last night as he hasn't had any in over a week and he slept four hours in a row. Then woke every two hours after that but only briefly. This is a good night for him and thankfully Harry slept well too cuddled into Andrew all night. I think we all feel a bit more human today than yesterday!
Harry is doing well. Nights are the worst time when he itches on and off all night. He has good days then days where he seems to be terribly itchy. I'm not sure why, maybe depending on where his skin cycle is at? He's shedding something shocking at the moment and every time you change his clothes dead skin drops everywhere. After the bath there is a layer of dead skin sitting on the water.. Gross! This is a good sign as it means his body is working to get rid of the damaged skin. No matter how many times I moisturise him it doesn't seem to help. This week we have had to bandage Harry's wee hands in the night to stop him from hacking his skin. He thought this was great for a few nights but
the novelty quickly wore off. I have also bandaged his wrists too as he keeps drawing blood with itching so this has helped to protect his skin. As hard as it is to see him this way I know we are doing the right thing. He's more happy than not thankfully so I know that he is going to get through this,
sooner rather than later I hope!

Harry with his 'Boxing Gloves'

Wrapped in towels having cuddles with Mum

All bandaged up

Harry's dead skin all over the kitchen floor!