A HUGE MILESTONE

Oscar is officially 6 months steroid free and Harry is 5 months. What an achievement for our wee boys. We are very proud of how far they have come. Oscar is on night three of putting himself to sleep so once this is established he will hopefully be able to start the night off in his bed. Oscar's eczema bits have flared up again. He has eaten mandarins this week so I'm wondering if this is the cause- wild stab in the dark really! Oscar has been complaining of being tired this week (more than usual that is) and has been very unsettled at school drop off, crying and not wanting me to leave. It doesn't help that we are usually late every day as he doesn't wake until anywhere between 8-10am! I'm hoping it will blow over and he will be happy at drop off again. I know he's fine once I have left thankfully and I know that he does love school.

Harry is still happy enough but he's made a mess of his neck and behind his ears - to the point that he's rubbed so much he has lost some of his hair. This shows how intense the itch must be. I have also discovered today he has blisters on the tips of some of his fingers and thumbs from rubbing so much.  He's also had another go at one of his feet today. Harry is back to having a terrible stench about him. His room smells after his day sleep and at night, even Oscar and Charlie have commented that Harry smells! From time to time I feel nauseous when I get a wift of him! It's so hard to describe. It's like he radiates heat and when you walk into his bedroom it feels almost humid and I just can't figure out the words to describe the smell! He's not oozing at the moment but still has a distinct smell to his skin. I'm sure this will reduce as he continues to heal.

Overall he's come such a long way too and I can't wait to see what both Harry and Oscar's skin looks like in a few months time. I was hoping to do a slideshow of photos of the boys skin from six months ago to now but haven't had the time so will post this in a few days.

Lastly thank you for reading this blog. Today marks just over 5000 hits! It's quite humbling knowing people care enough to take the time to check in on us. Thank you for the lovely comments on here and via Facebook from family, friends and People we don't know. Kind words and encouragement help us to keep focused on the end prize, itchy free, steroid free, drug free... happy children!

ANOTHER WIN

Two weeks in of Oscar's new diet of fruit,Veges and meat and his skin is looking unbelievably better! When Oscar started on methotrexate his skin completely healed. The burning and swelling disappeared. A few weeks later the eczema appeared. This started in October and we haven't been able to shift it- around his neck, under arms, upper thigh/ groin area, bottom and behind the knees. Oscar's skin has healed so much in such a short time and he even said himself "I don't feel so itchy"
I suspected corn as the wheat free breads and flour for baking is maize based. Oscar's had a slight cold this week so this puts us a step back however I'm hoping the next couple of weeks bring even more healing for him. Oscar even slept on Saturday night for 14 hours! He woke a few times but very briefly. Quite possibly this could have been the best sleep Oscar's ever had!

Harry is still happy enough but he's attacked his feet and legs this week. Lots of broken bright red oozing smelly skin. Even after a bath he smells! Harry's wee face is very dry too but I have to keep reminding myself how far he's come. He's back wearing an all in one suit with his sleeves. We still bandage his hands at night too. If only we could do this 24/7! All Harry's clothes are stained  yellowish from the ooze or red from blood. I can't wait to buy him lots of fresh new clothes but there is just no point at the moment as anything I buy will get ruined after a few wears. One day he won't smell and will be able to wear nice clothes! He really looks like a wee mismatched wee guy with his suits, sleeves and gumboots!
Harry has had a couple of nights where he has slept four hours before waking. This is pretty monumental for us so hopefully we get more of these nights as usually it's four hours total sleep for a night. We won't know ourselves when our wee men start sleeping all night!

A very sore leg!

Oscar's neck is finally healing

HAPPY HARRY

I'm so excited to let you all know that we are finally seeing visual signs of Harry healing! I know there has been a lot of healing from within that we can't see but just over the last week we have seen significant changes in Harry's skin and his overall well being. Harry's talking, laughing, playing. He's no longer snuggled upto me all day long. It feels like he's become independent over night wanting to walk rather than be carried into Kindy and school and doesn't feel the need to carry his Kane(snuggly blanket) with him everywhere. I cannot express how relieved both Andrew and I feel- we have our wee guy back! Harry's legs no longer look burning red and his stomach is beginning to look that way too. His arms are the worst with lots of broken skin. As soon as the sleeves are off Harry literally attacks his arms and we have to restrain him to get the sleeves back on! His overall appearance is less severe and over the last few days Harry doesn't seem to be smelling like what we refer to as 'rotten flesh' as much. I whole heartedly believe stopping moisturiser has been the key in his turning point towards healing.  Strangely though Harry has gone back to not enjoying the bath. The last couple of days he only lasted a couple of minutes before wanting out and today he didn't want in the bath at all. He's gone from loving the bath to hating it to loving it and now back to not wanting to be in it! He still has awhile to go on this journey but we really are on the right road to healing and I no longer need to self doubt. I can let go of some of the guilt I hold- watching Harry completely miserable and in pain daily for close to five months has been torture for us all! Hopefully in the very near future the insomnia will start to subside too. I'm not expecting everything to change quickly. It will still take time but I believe Harrry has overcome the worst of his steroid withdrawal. I have tears in my eyes as I type this! It's such an emotional roller coaster. Mentally I have more strength than ever to see this through now.
Oscar is on day three of his meat, fruit and vege diet and is happily embracing it. He's having platters of food for breakfast rather than a traditional breakfast in a bowl. He informs me that his food looks fancy so I must be doing something right, especially as he has eaten everything out of his lunchbox this week too. Why does healthy eating have to be so dam expensive though? We did a similar diet last year in terms of gut healing in the hope of that helping Oscar. Obviously it wasn't our magic answer but we also had intolerance tests done so this time round we have a clearer picture of what we need to avoid. My fingers and toes are crossed that in a few weeks we might see some more healing with Oscar.. If not we will need to go through his food list and refine it further. We will get him eczema free. The photos below of the two pink balloons were made by Oscar this week. The happy balloon apparently has no eczema, the sad one has eczema. Very interesting seeing these emotions portrayed through play.
Oscar is nearly six months steroid free- what a milestone for him. Thinking about all those days- mornings and nights when we applied steroids all over his entire body plus emollients and concoctions of all kinds. We had no idea the damage we were causing and what we were in for! I'm so thankful that the  boys are both healing and I can now for the first time in many months visualise a fun and happy future for our family. I'm so excited about this prospect!

A balloon with eczema

A balloon without eczema! 

Lots of broken skin on Harry's arm

Check out those legs.. Not much red!

                                                           What legs should look like!

Oscar finishes his school duathlon after a night of not much sleep

Charlie had his first Kindy triathlon too!'

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!!

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.

MERRY CHRISTMAS

Wishing everyone a very Merry Christmas and hoping it's a wonderful day of fun and laughter with family and friends.
A lovely day here watching our boys faces filled with excitement seeing that Santa had been. Tearing into their presents with anticipation and delight!  Sadly Santa didn't bring Oscar everything he wished for. His wish list consisted of looking like Charlie and having no eczema. However he did get a nerf super soaker that has been a big hit! A very hot 35 degrees though but we managed to have Harry in his nappy for a short while this evening before scratching and even a stint on the couch with just a towel on him after the bath- usually he needs dressed in his wee p.j suit straight away otherwise he scratches until he bleeds. All great signs we are heading in the right direction! Gosh he really has come along way. Oscar's skin infection is still lingering so we are smothering him in Manuka paint in the hope of nailing it soon. The heat isn't helping his itching though!
Right I need to sleep while I can.
Wherever you are in the world, I hope you have had/are having a lovely Christmas.

A rare moment of no clothes! 

A GOOD WEEK FOR ONE AND NOT FOR THE OTHER

A good week for Harry and not so good for Oscar.
We have started using an Avene emollient balm that is helping Harry so much. He's nowhere near as itchy and only slightly dry compared to what he was like. He has even had a couple of hours here and there throughout the week without bandages on! Within himself he is much happier and seems to be enjoying bath time again. Harry had one good sleep last week but I had put that down to the fact he had a cold, however lastnight he had a settled sleep too! It has been a long time coming so hoping for many more of these nights.  We are so relieved to see Harry much more comfortable this week and to see more smiles on his wee face. We were very kindly gifted the Avene cream from a very caring and generous lady who knows all to well about allergies and eczema. Thank you Emma for thinking of us and for your generosity. We are currently working on getting friends in the U.K/America to source some more Avene cream for us as its half the price over there!

Oscar's on another round of antibiotics for his never ending cough. He also has a skin infection that we have been working on healing naturally- antibiotics will help clear this too. As Oscar is on the immune suppressants his body has a hard time fighting infections so this prolongs him significantly in getting better. We have also been prescribed melatonin. Prior to this we have asked two doctors and a specialist about this and all have said no. A paediatrician that our doctors consult with has recommended we try this in conjunction with phenergan. It's still too early to tell however I have noticed Oscar is still stiring lots but not completely waking every time. Once we are on top of the infection it will be interesting to see how the nights are for him.
We are one week into the holidays and it is wonderful having Andrew home. I don't feel so consumed by Oscar, Harry and Charlie's demands! Andrew took Charlie out for the afternoon yesterday for special 'Dad and Charlie time'.  Having us both here means there will be lots of opportunities for one on one time with the boys. I'm very much looking forward to quality time with my wee boys.

Lots of white shining through

  

Finally, A big smile after bath time! 

A GOOD WEEK

As we have finally realised Oscar's body is trying to battle a skin infection, we have been using Manuka paint mixed in with his creams. He looks so much better and the last two nights he's fallen asleep straight away. Previously he needed patted until he drifted off anywhere between 9-10p.m. He  stays asleep for no longer than 1-2 hours but it's a positive sign that he's feeling much better. It's great to see some healing. Harry has had a happy week also. He seems quite comfortable and even managed half an hour with no bandages yesterday before scratching. We can see lots of white skin almost hiding underneath all the inflammation. We just have to be patient! He seems to be losing lots of skin again this week, big flakes instead of the breadcrumb appearance! Harry slept in his bed lastnight from 7-10.45 which is great for him. He then cuddled in with me and was restless for a couple of hours before falling into a deep sleep. I don't feel wiped out today so he must have slept reasonably well.
As an Early Childhood teacher I understand the importance of children's play. When children role play they are making sense of their wee worlds. Children love role playing shops, teachers etc. This week we watched our beautiful boys caring for Baby Daniel- A toy doll. They had turns of putting cream on him, wrapping him with bandages and socks. Initially Harry watched his brothers and towards the end he joined in telling them what to do and helped to pat the doll as it was itchy. Creams, itchiness and bandages are Harry's normality and seeing this played out I believe was comforting for him. In fact the next day after getting his creams on he told me Baby Daniel needed his cream on too. It was such a touching moment for Andrew and I to see all three boys showing their nurturing sensitive sides and also it was sad that this really is their life. Both Oscar and Harry have felt pain like no little child should feel. The worst thing for us as their parents is not being able to take that pain away for them.
I really do think we are over the worst for Harry and we are now waiting for more white days and less red. Oscar has also come such a long way in the last few months. I feel that he has a long way to go as the immune suppressants are masking what's really going on in his body and obviously we are still no further ahead with him sleeping but I think this week has been a turning point for both boys with Harry appearing more comfortable and getting on top of Oscar's infection. Fingers crossed for more of these weeks.

JUST THE USUAL WEEK

I don't know where this week has gone! Harry had another day of white skin. He's no longer burning however he is still very red. We had a very hot day this week and the poor wee guy had to wear his pyjama suit and bandages. We have learnt it's not worth the damage to his skin wearing proper clothes. We went to a kindy picnic a few nights ago and put Harry in socially acceptable clothes and by the time we got there from our house he managed to rip all his bandages off and his arms and feet were bleeding. We must have looked like a sorry sight walking in! We rebandaged him and there were enough distractions there for him to forget about being itchy. His wee pyjama suit backwards is a skinsaver! I sewed some socks into one of the suits for extra protection for Harry's feet. Unbelievably the socks haven't been ripped off yet-the strength of them is probably not so good as sewing is not my forte!
Harry had a really happy day yesterday, the happiest he's been in quite sometime so he is starting to feel better within himself. He has been having great day sleeps too in his bed so another good sign that's he's less itchier. Night sleeps are still erratic though. We inspect Harry's skin every time we take his suit off and comment on how it's looking. Now when I take his suit off Harry tells us"Looks mazing!"
Just the usual week for Oscar. No big itchy attacks but the same consistent itching all night long. His tummy,lower back, bottom and boy bits seem to be the worst parts! His eyes are also puffy again so I not sure if this is environmental or food related..or both!Also another blood test this week and not one tear. Such a brave wee man.
We have just realised over the weekend Oscar has a fungal infection on his penis and testicles at least this is what we think he has.  We needed to make another appointment for the doctors so will get this checked out too.
Oscar didn't fall asleep until 2.30 a.m Friday night and 12.30a.m last night.  When I say fall asleep I don't mean he slept from that time until the morning. That's the time he finally nodded off to get some sleep between waking to itch throughout the rest of the night. We have had a very busy day today with a birthday party, seeing Santa and a play date at friends. Most children would be exhausted and sound asleep by now- It's 10p.m. Oscar is wide awake still sitting on the couch as he tried to sleep but due to being so itchy he just can't.  Hopefully we can get his boy bits sorted and he will be feeling less itchier.
This time next week Andrew will only have one day of work left then holidays for six weeks. This will make a huge difference with both of us home to care for the boys. I can't wait!

A LITTLE BIT OF WHITE

In my last post I wrote how we have not seen any signs of Harry healing, I am so happy to tell the world we have had a whole day of white skin this week before it turned red again in the evening. The shedding Harry is doing is unreal. I'm fascinated with the shedding. Harry had two bath yesterday and  both times there were huge amounts of dead skin in the water and when we take off his pyjama suits mass amounts of what looks like dandruff falls from his body. I forgot to bandage his hands up yesterday and he hacked his wee feet to bits. All that healing ruined within seconds!

Harry gets terribly upset at nappy changing times and when we put cream on him. Understandably he screams and cries. Andrew has a sore ear at the moment from Harry screaming in the nights cuddled up to him. He needs to go and see a doctor however in the mean time he has protection- ear muffs!! Actually when Harry was a baby I wore ear muffs from time to time some nights on the couch feeding him for hours on end. His cry is terrible! Harry is having a very happy day today and so far quite comfortable. Very reassuring to have brief moments of this and hopefully there will be more to come.

Oscar is still itchy like anything in the night. To look at he looks great but there is still lots going on in his wee body. He had a massive itchy fit two nights ago and didn't fall asleep until ten and only for brief moments throughout the night. He begged and pleaded for the sedative pills to make him fall asleep as he was just beside himself. 3mg of diazepam didn't help so back to the drawing board! Oscar has another blood test next week so I will make an appointment to see the doctor too. 

Today marks three whole weeks of Oscar attending school without a day off, a first for him. There were a few late starts to the school day but this really is huge! I'm so proud of him. 

I had my first ever panic attack last week! A combination of frustration and tiredness just hit me. I was hyperventilating and it felt like my heart was going to jump out of my chest! Andrew wasn't home and thankfully the boys had just gone to bed. My wee friend Woof cuddled into me the whole time, he just new something wasn't right so I patted him until I calmed down. I haven't had one since and hopefully it doesn't happen again. It was horrible not feeling like I was in control! Sleep deprivation is slowly turning me into a crazy lady. 

Not long until the school holidays now and things will be much easier having both Andrew and I home. I'm counting down the days!

24 hours worth of skin shedding!

Shedding! 

SOME DOWN TIME

The last week has been much the same with Oscar and Harry. Long itchy nights and if Harry isn't eating he's usually crying! I am working hard to make sure his wrists, hands and feet are bandaged as much as possible throughout the day and night to prevent further damage to his skin. Harry's very good at managing to undo the bandages so socks also get put over his hands. Sometimes he will happily tolerate this and other times he will try and scream the house down in frustration wanting them off to get at his skin. I have just figured out a way today to stop Harry from getting to his stomach. We had previously tried safety pins to keep his all in one singlets from being popped open but he pulls so much his singlets end up with holes, however I turned his wee pyjama suit around today so the zip is at the back, why hadn't I thought of this earlier?! He will be dressed like this 24/7 from now on. Harry is six weeks steroid free and other than the first week, the last couple of weeks seem to be the most challenging. Tiredness is kicking in for Andrew and I, as we can't see any visual signs that Harry is healing so it's groundhog day and night caring for him feeling like everything we are doing isn't helping his wee body. Andrew and I feel defeated. Perhaps Harry needs to be on immuno suppressants too. As I write this though my competitive nature kicks in - Let's wait another week, maybe we will see some signs of healing soon! Actually Harry did have a brief moment last week where he woke up with white legs and a white stomach.  It only lasted a couple of hours before he was flaring again- he has been in a constant flare since then! I really should stop being so negative and take that as a wee win! I am thankful also that Harry's face seems to be better than the rest of his body. His wee legs are definitely the worst.

Oscar has quite a bit of eczema on his body at the moment. As of next week we will be strictly living off meat, fruit and vegetables and rice for a couple of weeks. Some foods have sneaked back into our diet that need to go again. We do eat healthy but the odd lollipop, ice block etc will be eliminated along with soy again for Oscar. We have slowly reintroduced soy but I'm not convinced he's fine with it. I will need to do a meal plan of some kind to get my head around it and be organised with food for everyone's needs! The doctor has said we can try Oscar on 3 mg of diazepam as 2 didn't help at all. We have tried this only once and it still didn't help him to sleep! 

Last weekend Andrew and I got some well needed downtime. My family came up for the weekend and Andrew and I spent Saturday night away in Queenstown. It was so lovely spending time together. I forgot how easy it is to get in and out of the car without children! We both managed to have a good sleep from 10.30-7. This equates to roughly three nights worth of sleep for us. It was so strange waking up next to Andrew. I can't even remember the last time we slept in the same bed all night long-well over a year ago! In a way it was reassuring to hear the boys (other than Charlie) itched most of the night too. It's not just in our heads! Our wee break away will keep us going until the school holidays in a few weeks time. Andrew and I will be able to give each other a break throughout the day to snooze and having both of us here to care for the boys will lighten the work load for me, especially caring for Harry's needs.

I enquired about respite care yesterday. Eczema is classed as a personal health issue not a physical one so of course we don't qualify for this. It was suggested our doctor refer us to a social worker at the hospital who may be able to sort out some respite care for us based on a child having a chronic health condition however the condition needs to be very high needs. Guessing we won't qualify for this either and by the time we actually get an appointment it will probably be half way through next year! Why is severe eczema not seen as a serious debilitating condition? The impact on our family has been huge. Loss of income, our mental state, in fact I'm not sure how Andrew and I have managed all these years on the sleep we get. I'm pretty sure many families would have crumbled by now.  We will keep going, we will keep living in a 24 hour period until we get through this. I yearn for a 'normal' life again. I won't give up on the prize-  Having three happy healthy itch free boys... And sleep for Andrew and I again!

On fire!

Itchy..

More itching

Clothes on backwards!

Ouchy legs