A FLARE NEARLY OVER

My gosh, what a week for wee Harry. This has been his second week of full flare and he has been so miserable. Itching like mad, oozing, not sleeping, he's had diarrhoea and just wants to be continually held, cuddled up on the couch with his blanket or in the bath so that he can scratch! Yesterday he had a sleep in the morning then after an hour he said he was tired and put himself back to bed. At 6.30 tonight he climbed into his wee bed and said he wanted to sleep. What two year old does that?! I thought this flare would never end! We have also seriously been considering immune suppressants however this morning Harry woke and started talking instead of crying. I knew straight away he was feeling better. He is soo dry and scaly. It actually looks like he has been sunburnt and the skin is peeling. We can pull flakes off of him!.. And this according to the specialists is 'just eczema.'
 The greatest news though is I can see glimmers of white underneath all the dryness. This is the first time I have really seen white on Harry's skin in months. I'm looking forward to seeing how he goes over the next few days. It's been heartbreaking seeing him sick this week. I have been so scared, anticipating all kinds of scary things happening to him as I have never seen him this way. The initial first six weeks were hard too but this is his first big flare since then really as he seemed to be not getting any worse- or any better for quite some time. So this has knocked him around hugely. I'm so proud of Harry for getting through this. I know he is able to get through the next flare and hopefully it won't be as severe. Officially one flare down! Harry has also successfully taken supplements this week without being sick. I'm assuming he's too exhausted to protest so hasn't really put up much of a fight and in turn has figured out they don't taste as bad as he initially perceived! This is great that we can get some goodness into his wee body to help support it through TSW.

Oscar is still itchy in the usual parts however he is drying up and healing, it's just a very slow process. We believe the moisturisers feed his itchy bits. We have done a couple of test runs on our new theory and sure enough the next day he is red and itchy and has scratched the itchy bits more throughout the night and as soon as we stop he starts to dry up again. So fingers crossed he continues to heal. School starts back on Monday. The challenge starts again to try and get Oscar to school on time! For those that may have not read previous posts, Oscar usually sleeps in from anywhere between 8-10 depending on how his sleep during the night. I have a feeling it will take awhile to adjust back into the school routine.
Fingers crossed we are able to have some fun times over the next couple of weeks with the boys, we would love to see Harry tearing around with a smile on his face again!

Mr 2 looking like a wee wrinkly old man

V

Oscar's itchy armpit! 

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.

2015-DONE AND DUSTED

Well what a crazy year. Our year started on one massive high moving to Central Otago.  This had been something we wanted for the last few years so for it to become a reality is fantastic for our family. It didn't take long for things to go downhill though for two of our wee men. The hardest thing for me this last year has been watching the boys in pain and not being able to take it away for them.
2015 is now in the past which means a new year, a fresh start. 2016 provides hope, this is something I will never give up on. This year will bring a year of happy, healthy children in our family- a year of feeling like a normal family!
I will reflect on a few things from the year. The compassion and empathy of friends, family and even people we don't know has been very touching. I have had many messages from people I don't know wishing the boys well and encouraging us to not give up. Oscar has even had little presents sent in the mail by very thoughtful and caring people.
2015 has challenged me to breaking point.. But I didn't break! I can whole heartedly write that there have been many nights where I wanted to give up, walk out the door and not come back. There were nights where I couldn't handle the boys scratching and itching, the noise would infuriate me to the point of yelling at whoever it was I was patting. Some of you might be thinking how could you yell at your child when they are not well and can't help being itchy. Night after night of listening to that dam hacking sound being as sleep deprived as we are, In a way is a form of torture...similar to the sound of scratching down a blackboard! Perhaps only a parent who has gone through this with their child will completely understand what I mean by this. In the big picture yelling at my children isn't really all that bad.. It could have been a whole lot worse!
I have learnt so much about my children. All three boys are resilient little fellas. The amount of hazy school days Oscar had and according to his teacher you would have never known that he had only a few hours of sleep. Far out- if that was an adult you can imagine the complaining they would be doing. Considering the year we have had I think we have three mostly happy and grounded wee boys.
2015 has proved to me how strong our marriage is. It feels like Andrew and I lead seperate lives. I know our children's health has to come first but when you don't even sleep in the same bed as your husband for over a year, I imagine this could take it's toll on some marriages. This has become our norm and it will be very strange when the time comes for us to sleep in the same bed again.

I started this blog in the hope of helping one other itchy family. If I could achieve this then it would be worth it. I have had many messages this year of people asking for advice or needing support. I'm certainly no expert and can only draw from our experience but being there for others on the same journey makes it not feel so lonely.

Thank you to everyone who has given up a little bit of their time to read our blog. It has meant so much to me that people are genuinely interested in wanting to know how the boys are doing.
A few acknowledgements to make-
Lisa Welbourne from 'Rough Patch'- Your support, knowledge and guidance has been huge in this journey. You have given up so much of your time for us. You are so caring and kind- thank you for everything and for caring about our boys.

I feel so lucky to have such an amazing husband. I wouldn't have been able to stay strong without you Andrew and most likely I would have fallen apart a long time ago! What a great team we are- We really would kick arse in an adventure race being so accustomed to no sleep! Xx

Oscar, Charlie and Harry-Aka 'Porka', I feel very blessed to have you little monkeys in my life. Some days I'm sure you tag team to try and drive me insane. It really would be so helpful boys if you tidied up your toys after pulling them out and leaving them scattered throughout the house and if you would all agree on a few meals that the three of you like-I just can't get meal times right no matter how hard I try! I love you boys so much. I'm looking forward to a fun year together. A year of healing so that we can move forward and continue to create happy childhood memories.

Happy New Year everyone -I hope it's a good one.