JUST THE USUAL WEEK

I don't know where this week has gone! Harry had another day of white skin. He's no longer burning however he is still very red. We had a very hot day this week and the poor wee guy had to wear his pyjama suit and bandages. We have learnt it's not worth the damage to his skin wearing proper clothes. We went to a kindy picnic a few nights ago and put Harry in socially acceptable clothes and by the time we got there from our house he managed to rip all his bandages off and his arms and feet were bleeding. We must have looked like a sorry sight walking in! We rebandaged him and there were enough distractions there for him to forget about being itchy. His wee pyjama suit backwards is a skinsaver! I sewed some socks into one of the suits for extra protection for Harry's feet. Unbelievably the socks haven't been ripped off yet-the strength of them is probably not so good as sewing is not my forte!
Harry had a really happy day yesterday, the happiest he's been in quite sometime so he is starting to feel better within himself. He has been having great day sleeps too in his bed so another good sign that's he's less itchier. Night sleeps are still erratic though. We inspect Harry's skin every time we take his suit off and comment on how it's looking. Now when I take his suit off Harry tells us"Looks mazing!"
Just the usual week for Oscar. No big itchy attacks but the same consistent itching all night long. His tummy,lower back, bottom and boy bits seem to be the worst parts! His eyes are also puffy again so I not sure if this is environmental or food related..or both!Also another blood test this week and not one tear. Such a brave wee man.
We have just realised over the weekend Oscar has a fungal infection on his penis and testicles at least this is what we think he has.  We needed to make another appointment for the doctors so will get this checked out too.
Oscar didn't fall asleep until 2.30 a.m Friday night and 12.30a.m last night.  When I say fall asleep I don't mean he slept from that time until the morning. That's the time he finally nodded off to get some sleep between waking to itch throughout the rest of the night. We have had a very busy day today with a birthday party, seeing Santa and a play date at friends. Most children would be exhausted and sound asleep by now- It's 10p.m. Oscar is wide awake still sitting on the couch as he tried to sleep but due to being so itchy he just can't.  Hopefully we can get his boy bits sorted and he will be feeling less itchier.
This time next week Andrew will only have one day of work left then holidays for six weeks. This will make a huge difference with both of us home to care for the boys. I can't wait!