MIDDLE OF THE NIGHT MELTDOWNS

Oscar is five months TSW and the problem areas on his skin have been at a bit of a standstill. Or it appears to look like it's going to heal only to go back to being itchy and ouchy again. This could possibly be 'Just eczema' so we will need to figure out what is irritating him. I'm suspecting food of some kind so we will be working hard to figure out what! Oscar's had a few random good nights sleep over the last couple of weeks . He is still waking lots but nowhere near like he was six months ago. Oscar started keyboard lessons too this week- a huge achievement for him as last year this was something we would have never considered. Hopefully next year he might be able to participate in a sport. His class are going for swimming lessons starting next week for three days then two days the following week. Sadly Oscar can't go swimming in chlorine, the mere thought of this freaks me out! It saddens me that he doesn't know how to swim and that he's probably the only one in his class unable to go to lessons. However his health is our priority so he will be having home days with me. We have decided to have our own swimming class at the lake!

Harry's skin is much the same, although yesterday he woke with a white face and legs that stayed white for at least half of the day. He was in such a happy mood and not one comment about being cold! Today he's back to being red but I will take one happy day and use that to focus on the thought of more of these in the future. Harry's a couple of weeks moisturiser free and seems to be coping with that fine. The sound of opening the pantry door to get creams would set him off into a screaming fit. I need to follow his lead and listen to him and obviously I don't want to listen to his scream any more than necessary!
Harry's still happy to be in the bath- purely because he can itch! His latest saying is "Take my skin off". He wants to pull the flaky skin off but sometimes it's not ready to come off. Nights are still hell. Around 4-5 p.m every day I get a sinking feeling in my tummy knowing what we are in for and that our day is only half over- the night shift is about to start! Harry and I had a particularly rough night last Monday. I had forgotten to wrap his wee hands and even though he wears scratch sleeves he still itches! I tried to bandage his hands and he completely lost it. He must have had a surge of adrenaline as I couldn't even hold him down so Andrew had to come and help. It took the both of us to bandage him and then I cuddled Harry into me while we both cried. Gosh it's heartbreaking seeing him like this. We then got up for a midnight snack before attempting to try and sleep. Harry is so grumpy and irritable in the mornings! It's a struggle to put his nappy on and dress him. In fact we dropped Oscar off to school the other morning with Harry not wearing pants! After a morning sleep he comes right thankfully, although he still wants to be sitting on the couch cuddled up with me. I love being snuggled up with him but I can't wait until he is tearing around exploring his wee world like a two year old should be.
We have had a big weekend with Andrew completing in the Challenge Wanaka.. 3.8k swim, 180k bike ride and a marathon to finish it off! He had a great race day, although I'm not sure how on such limited sleep. I was able to take Oscar in to support Andrew towards the end of the run and Oscar proudly ran over the finish line with his Dad!
Oscar then got in the car and stripped his pants off and we drove home with him half naked as his legs were itchy! Thankfully we didn't get pulled over by the police!
Special thanks to Kristen for offering to come out and look after the boys so we could see Andrew finish.
Lastly I'm so happy that my blog has been found by someone this week in NZ needing help and support with TSW for their child. This was the initial purpose of sharing our story in the hope of helping someone else and I have achieved this already.

Oscar's legs 

Harry's legs