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 

JUDGEMENT DAY

Back to school this week for Oscar and so far so good. Surprisingly enough we haven't been late yet! I have had to wake him most mornings though but as the term goes on I will let him sleep in. It is lovely dropping him off at school knowing he's happy and not completely exhausted like last year.  Actually Oscar had an amazing sleep last night. The first in many months. He is still itchy in the same places, although it's not getting worse or any better at this stage. 

Harry had a lovely couple of days feeling well. What a relief for us to see him playing, interacting with his brothers, smiling and singing! It's been a long time coming having a wee break through. He even woke up with white legs yesterday! They have since turned red again. It's amazing to watch how quickly his skin can change. A little girl at Oscar's school yesterday asked what the red was on Harry's legs. I said he has itchy ouchy skin and she replied telling me he looks sunburnt! She's so right! I sadly had a run in with a parent at Kindy yesterday too. A lady I met for the first time, a lady who absolutely has no idea how hard we have worked over the last five years to get our children well,  how many thousands of dollars we have spent on private specialists, dieticians, naturopaths, magic potions, supplements, creams, how many sleepless long nights we endure... How many tears we have cried for our boys- and how much we love our children.  Her complete ignorance to our situation shocked and upset me. From the moment we are pregnant we become a target for society to criticise and categorise us. The terrible mother who ate sushi while pregnant, the way in which we choose to birth our babies, the mother who offends the public by breastfeeding in the mall, the mother who didn't try hard enough to breastfeed, taking the supposed easy option of bottle feeding. Why are we so quick to judge other parents when it is none of our bloody business! I guess for the first time in my life I'm possibly looked upon as the neglectful mother, the uneducated irresponsible mother for not taking doctors orders! Topical Steroid withdrawal isn't recognised in NZ. This is a fact, however it doesn't mean it's not real.  There is so much overseas research happening right now into TSW which is fantastic, The USA are as always leading the way with research and development. I only hope it will be recognised here in NZ sooner rather than later, although pharmaceutical companies wouldn't agree with this statement.
We are all entitled to our own opinions and beliefs and if you don't believe in what we are doing is right for whatever reason, I accept that. However I do not accept rudeness, nastiness and right now with everything we have going on, we do not need the stress of this or to be challenged by anyone about what we are doing, whether it be family, friends or self opinionated mothers at kindy. We only want what's best for our boys and believe we are doing the right thing. We are under a specialist who knows we have chosen to not use topical steroids any longer and the boys doctor knows we are not using topical steroids, and we are working closely with Lisa Welbourne who runs an eczema clinic in Auckland called Rough Patch so we do have medical support. We are the experts of our children. Not a GP or specialist that sees us for a five minute appointment every few months. We will get our children well. We are not taking the easy road to do this but it is certainly the right road for our boys long term health.
A final thought for the day...
Don't judge what you don't understand.
Ok not so final words as I can't miss out telling everyone...
On a positive note we have had a proud parent moment that has to be acknowledged. Charlie has mastered riding his two wheeler bike for the first time. It was very precious watching his big smile and listening to his excited giggle. Harry has also figured out the balance bike too-sleeves and all!

We will have our own wee biker gang in no time!

Harry working out a new scratching technique....

Stoked to have mastered two wheels!!!

Harry learning the basics, sleeves and all!!