INCESSANT ITCHING!

Oscar has been extremely itchy the last few weeks. His groin area and under his arms had been the worst areas and it has now spread to behind his knees and stomach. I patted him for 3 and a half hours the other night to get him to sleep! He is yet again constipated too which seems to be a regular occurrence lately. He is getting out of bed most days around 10a.m-thank goodness for school holidays! On the whole he is mostly happy during the day and come night he turns into an uncontrollable itcher. The sheets are heavily stained every morning with blood. It's been very hot here and I don't think that is helping him in the night.
I compared Harry's feet from now and November and was so relieved to see they are nowhere near as red. The prominent red line has slightly faded. This gives me so much hope that we are on the right track! Andrew's Aunty has kindly made us some sleeves for Harry to wear that are lined with satin on the hands,  stopping Harry getting to his hands. I'm not sure why I hadn't thought of these earlier! He is much more comfortable wearing these and a t-shirt and nappy in this heat instead of his p.j suit backwards. Although he is now complaing that he's cold, to the point where he is cuddled up on the couch with a blanket and its 30+degrees! Not being able to regulate your body temperature is also a side effect of steroid withdrawal. We have also been gifted a sample set of sleeves from BAM AND BOO to try for Harry. The hand piece is lined with silk and they look just lovely. Thank you to Toni and the team for offering the sleeves to us. We are truly grateful.
Harry has very cleverly figured out other ways to try and relieve the itchiness. He climbs out of his bed and sits on the floor rubbing his feet against the carpet, sits on his high chair and leans into the back of it rubbing, he does what we call the washing machine on the carpet leaning side to side on his back rubbing against the floor and the most recent and clever solution- Harry opens the pantry door and rubs his wrists against the shelves, to the point now where he has a big welt on his wrist- looks like we will back to bandaging his wee hands too.
I know the holidays are heading towards being over. Not sure how I will cope when Andrew goes back. It has been great sharing the demands of our boys and also seeing more of Andrew has been lovely. We were even  lucky enough to go out for lunch for our wedding anniversary last weekend.  A couple of hours child free makes such a difference! Thank you Uncle Neil for looking after the boys:)


* The above was supposed to be posted last week. We have had a crazy week with Harry and I just haven't had the headspace and energy to look at my blog.
Quick update - Oscar is on the mend this round. All his itchy yucky bits are starting to dry out finally. He's still uncomfortable but is definitely looking better. Harry on the other hand has had a big flare up this week. He is unbelievably itchy. I cannot even begin to explain how intense his itch is. From what I have previously read about TSW the itch is to the bone. Our poor wee baby is in so much pain. He wants to be held all day long and the times we can't do this he is crying. Yesterday he climbed into bed  under the covers and told us he was sleeping. We thought how cute of him. Then a few minutes later Andrew checked on him and he was lying still looking like he might fall asleep. Andrew turned away then heard Harry scratching. Andrew pulled back the covers and Harry had taken of his p.j pants, undone his all In one singlet top and was itching himself to bits! His  stomach oozed all day yesterday. It is so gross! As you can see by the photos it looks like he has spilt a cup of water on himself, but nope it's all ooze. It's not as bad today which is a good sign this flare is starting to calm down. Topical steroids constrict blood vessels and when you stop using them the blood vessels then dilate, pouring out clear fluid-plasma. Poor Harry smells terrible too, this is from the fluid. He has obviously overheard us talking as he announced at the dinner that he stinks! Other than the first six weeks of hell, this has been the worst week for him on this journey to healing. Ha, as I write that I'm wondering if he is actually going to heal and when!!! So much self doubt and guilt creeps in. We have to get him and Oscar through this- and we will. It's just hard to see light at the end of this when everyday seems the same.