Harry has been doing well with his skin looking quite good. The biggest challenge is not letting him get to his skin so he can't tear it apart. He has some new Scratchme not sleeves (thanks Mum! ) and is finding it strange that he has hands free to feed himself. He keeps asking me to help him so I have to remind him he can do it. Turn our back for a second though and he's straight into scratching so we have to watch him like a hawk. We are continuing to see more pink/white skin. Harry's still shedding skin but no where near the amount he was.
Oscar has missed a few days off school with a tummy bug prior to Easter then after Easter he was sleeping in until between 10.30-11.00! His body is trying to fight getting a cold I think as he looks run down.
On Friday afternoon a muesli bar wrapper fell out of his school bag onto the floor. I queried him on it and he burst out crying telling me that someone must have put it in his bag and he didn't want to talk about it. I left it for awhile and brought it up again later that evening. According to Oscar he found it in the playground and then ate it. He said it was ages ago but based on the night we had and the red spots all over his stomach the next morning I'm pretty confident it happened on Friday. The bar was full of dairy, soy and eggs.
A few weeks ago when I picked him up from school he was eating a bag of potato chips he claimed to have found so we have not long ago already discussed only eating food from his lunchbox. Then yesterday I went into our wardrobe and found another bar on the floor, different than the previous one with only a small bite out of it (clearly he didn't like it!). I asked Oscar again if he found it at school and he said yes and began to cry, begging me to not tell him off. If only he knew how sad I was feeling for him. Again he claims he found it in the playground.... how many more do we not know about?. I feel like my life revolves around preparing food for Oscar that he's not allergic to. It's dam hard work to provide variety when the choice of foods is limited. Oscar has also mentioned someone has told him his lunchbox is yucky. He is very unsettled at school drop off crying and tries to run back to the car! I'm wondering if this all related. Not sure how we are going to tackle this but thankful we now know whats happening. Today we are going to attempt to make our own muesli bar but will it be enough for Oscar to not give in to temptation at school?
Andrew has helped to make the following video clips of the boys. Heartbreaking for us to see all the photos put together. Harry's is harder to stomach however Oscar has been on this journey since the age of one! Putting Oscar on the immune suppressants was definitely the right decision for us to make. It scares me to think how sick he would have been otherwise. The immune suppressants have helped to give him his childhood back. We still feel Harry is far too young to be on them and he's made so much progress in the last six months. He's happy itchy now compared to miserable itchy!
I'm confident we are over the worst of this journey, I at least hope we are!
Oscar's Skin Condition Clip 2010-2016
Harry's Skin Condition Video Clip Oct 2015 - April 2016
No comments:
Post a Comment