Wednesday, September 27, 2017

A SMALL REACTION

A couple of weekends ago we went for a play at the park. There was a grass hill there and Charlie and Oscar started rolling down it. As soon as I saw Oscar on the grass I panicked as this would usually result in a trip to the doctors for prednisone as Oscar's reaction would be a bright red burning rash over his entire body for days.
Oscar had shorts and a t shirt on too, I let him play on the grass for a few minutes before asking him to play at the park.
There was no immediate rash thankfully but sure enough half an hour later his arms and legs came out in a rash. We quickly went home and Oscar had antihistamines and a shower. He also had welts on his stomach. A couple of quiet hours and he came right. Reaction over! What a massive relief. This is Oscar's first allergic reaction since coming off the immunesuppressants and it was a totally 'normal' and managable one.
We are drying clothes inside and in the dryer at the moment as there is so much pollen around. It's not worth the risk as this week Oscar's skin is the itchiest it's been in months. Harry's skin is too. This could be because Harry decided to help himself to peanut butter..by the spoonful!
I am so grateful our days of debilitating allergy reactions are over.

Charlie is also rundown at the moment. His mouth is full of wee ulcers and he had a temperature over the weekend and is very tired this week. One more day and then school holidays..wahoo.
Oscar's reaction to grass


Oscar's legs this week

Harry's arm

Harry's feet are still itchy.  No where near as bad as they used to be! 


Wednesday, September 13, 2017

NO ECZEMA

I never thought I would have a post titled 'No Eczmea'. Our life has revolved around Eczema for so many years that it's our normality. Oscar is nearly two weeks eczema free, not one tiny itchy bit anywhere on his body. He did have a bath a few nights ago and that resulted in itchy legs for the evening but I think that may have been from the heat.
Oscar has moisturiser on every night before bed and as I apply it I can't believe how amazing his skin is.  I'm blown away actually as we have never seen his skin so clear before.
The pessimistic part of me is waiting for a flare up!
I wonder how long he will continue to present with no eczmea or is this the end of this horrible journey for Oscar?

Harry's arm is looking much better now with using Aveeno and Manuka Paint. Years ago we would have just grabbed the steriod ceeam out of the cupboard for a quick fix. We now know that we have to ride out flare ups and unfortunately the process isn't as quick as steriods but it's by far the best option!

Harry had a rough round of blood tests this week. When we arrived at the doctors Harry hid under a table. Initially I thought he was playing until I realised what he was doing! He was so upset and stressed and it took three nurses and myself to try and calm him down but they couldn't find a vein. After an unsuccessful attempt we had a break and round two was much better. An hour later it was finally over with. Of all the blood tests the boys have had this was the worst by far!

*I was meant to post this two weeks ago!
Oscar had two weeks of being eczmea free.
He's itchy again in the usual places but I'm not complaining, two weeks of not being itchy is one massive milestone and the longest period in Oscar's entire life of being eczema free.
Fingers crossed for another round of this soon as tonight Oscar's tucked in next to me itching like crazy. Nights like this are a sharp reminder of what things were like for us every night.  
Right time to do some patting!


Friday, August 11, 2017

ONE ITCHY ARM

Typical, as I write about all our positives we wake to a very non-coping wee Harry.
He managed to sleep all night again but has woken up with one itchy arm. I'm stuck on the couch patting and reassuring him.
He's in tears and grumpy, rightly so!
He managed twenty minutes of wet wraps before I gave into his crying.
Unfortunately Andrew is away for the day in Queenstown doing a race so I'm going to have to juggle the itch and the boys on my own.  The boys and I are heading over this afternoon - perfect time for Harry to shred his arm to bits!

Hopefully I can distract Harry soon with toys and our day gets better.


Ouch!

AND ANOTHER FIRST

The boys are still sleeping in their beds for most of the night. When our new bed arrived it became a child magnet for a few nights with all of the boys getting up in down to have a cuddle in bed with us!
Unbelievably lastnight and the night before the boys have slept all night long in their own beds...without waking! What a strange feeling waking up without being woken through the night. It has been our normal for nearly eight years!
This is one very huge first for us! Gosh our lives have changed entirely over the last year. It's very very exciting. I can't even begin to describe how happy we are.

Oscar's skin looks immaculate, not one spot of eczmea over the last few days. He does have one massive attitude though. I don't know if this is normal for a seven year old boy or not!
Harry's doing very well too. Both Harry and Charlie have been unwell this week so this usually results in Harry getting itchy.
Nothing we can't handle!

Now that I haven't got so much to document and our itchy journey is coming to an end I won't be putting many posts on my blog. I need to spend time with my family and keep enjoying our new found life.
I will do a post soon of before and after pics to show how incredibly far the boys have come.
To say we are proud of all three of our boys is an understatement!

So many nights I have cried watching Oscar and Harry sleep knowing that their sleep would be brief and at any second they would be waking to endure hours of itching. Now when I see them tucked up in their own beds I smile knowing they are finally comfortable enough to sleep and this sleep will give them the energy to enjoy their childhood.

Saturday, July 29, 2017

LIVING!

The boys are now back at school after two weeks of holidays. We have enjoyed spending time as a family getting out and about. No more days of being stuck on the couch all day patting an itchy child!
Night times are hit and miss. Oscar has been waking up during the night and thinks it's time to get up. It takes him awhile to settle back to sleep but I guess his body is getting used to what it feels like to sleep all night long. For his body, a five or six hour stint of sleep probably feels like two nights worth of sleep!  Charlie has been waking too for a drink or toilet stop and Harry has suprised us with quite a few nights of sleeping through. He still says every night at bedtime that he's going to sleep all night long.

Both Oscar and Harry had an itchier than usual few days as we ran out of Manuka Paint. Their skin is looking much better now after a few days of using it again.
Amazing what a difference one tiny drop of it can do for their skin.

Charlie is getting more affectionate by the week. He's asking for kisses and cuddles from both Andrew and I or snuggles up to us for a cuddle. I'm guessing he now knows we are able to give him more affection, he's not having to compete with itchy boys.
Of course we gave Charlie affection but it was always interupted or brief. Now when he is cuddled up with me I daren't move! As I've previously mentioned these times with Charlie feel so special and I feel like I have a lot of making up to do on this.

We have had lots of people comment on how good Harry's skin looks and reminding us how bad he was this time last year.
He really is a different child.  He's a wee boy enjoying his childhood. Harry's kindy teachers have commented on how caring and empathetic he is towards others. I put this down to what he's been through and the care that Andrew and I have put into getting the boys well again.

Our room is nearly all painted and our new bed arrived this week. So nice having a big bed. I made a sign saying no kids allowed and put it on the bed and Oscar cried when he read it. I'm sure you can guess the boys have taken no notice of the sign!

Life is so much easier for us now. Life seems mostly normal and what a releif for us. During the school holidays we went to a friends for dinner and she very kindly catered for our long list of dietry requirements. Aside from the food aspect, going out for dinner as a family has been pretty much a non event for us as it was too hard on minimum sleep. We were all exhausted by the evening and with tiredness brings more itching.  As soon as the sun went down the boys would be itchier than during the day!
We also took the big boys for a ski lesson over the holidays. They had so much fun. All these new fun things to do...
We are no longer existing, we are living!






Saturday, July 1, 2017

CHARLIE SANDWICHES

We are now two weeks in with Oscar sleeping in his bed! Absolutely unbelievable. Our lives have completely changed. Andrew and I get to see each other in the evenings, fall asleep together..wake up together! It's still feels so strange not sleeping with one of our children.
Harry's sleeping really well too and most nights we seem to be able to settle him back in his bed. He even told one of his kindy teachers last week that Oscar and him slept in their beds all night long and Mum and Dad slept in their bed together! Harry's teacher told me about this conversation and jokingly warned me to be careful! We've had a few people joking with us about the fact that now we are sleeping in the same bed another wee baby Sloan might be on the way. I can tell you right now that we are done with babies! We finally have our lives back and we want to enjoy finally being a family being able to do things together, go on adventures and create fun childhood memories for our boys.

A really special part of Oscar and Harry sleeping in their beds is that most mornings Charlie comes in and has cuddles with us. Andrew and I both give him cuddles at the same time and tell him we are having a Charlie Sandwich. One morning we did this he sat up and looked at both of us then gave Andrew a kiss on the cheek then snuggled back in with us. That night when I tucked him into bed I said I would see him in the morning for a Charlie Sandwich and he said "Mumma, I love Charlie Sandwiches". It's very special to have these moments with Charlie. It must be such a sense of normality knowing he's not the only one going to bed on his own.

Oscar and Harry have had a big week with their school production for three nights. They had face paint on for it and when I picked Oscar up on Thursday night he had two red spots on his face. The usual red spot that turns into impetigo. It's obviously a weak spot for Oscar's skin and with the combination of sponges probably being used on other children and the face paint it has caused the infection. Thankfully we had antibiotic cream and got onto it very quickly as it literally multiplies before your very eyes. The next day it cleared up really well as the day went on. I kept both Oscar and Charlie home but both wanted to go to the last night of the play. Oscar's face looks much better today and hopefully by Monday the spots will be tiny.
Today has been a very quiet day with the boys being tired from three late nights in a row.

We ended up ordering a new king size bed last weekend.  There just doesn't feel like enough room for two adults in our bed with both of us being so used to sleeping with little children. We have always said that once the boys are back sleeping in their rooms we would do our room up. Andrew has started painting the undercoat this weekend so hopefully in the next couple of weeks it will be complete. Our own room again after all these years, very exciting!

Oscar sleeping soundly in his own bed!

I ordered this for our room and ironically it arrived the week Oscar started sleeping in his bed! This will remind us of what we have gone through and what an amazing team Andrew and I are.


Monday, June 19, 2017

A LONG TIME COMING

Both boys skin has settled compared to the last couple of weeks. Excessive moisturising has helped!
Last weekend we had a big chat with Oscar about him sleeping back in his bed and especially starting off in his bed. 
With heavy bribery Oscar tried so hard on Saturday night to stay in his bed. He fell asleep in his bed and woke up in the morning in his bed, he did wake many times but we called it a success and took the boys to Queenstown for a day trip and suprised them with Hells Pizza. This was the first time we have ever been out for pizza and the boys were so excited!
Oscar has made a reward chart that he's stuck on his bed. If he sleeps five nights he gets to choose something from Smiggle, another five nights equals lego, another five he wants pizza again. Amazingly Oscar has slept six out of seven nights this week starting off in his bed and waking up in his bed! He's woken through the night a few times but we have successfully been able to settle him.
Oscar is so proud of himself and of course we are so very proud of him. This is the first time in his entire life he's slept so well.
Every morning when Oscar wakes he ticks off the chart he's made and is stoked that he gets to choose a pencil case from Smiggle.
There was a bonus box on his chart too. If both Oscar and Harry sleep in their beds all night then we will take them up the gondala in Queenstown and go luging.
On Thursday night Harry woke quite a few times itchy but somehow Andrew managed to settle him each time and at 6.10a.m on Friday morning Andrew and I both woke up next to each other! He said good morning to me and I burst out crying. Aside from one night away it has been two years and four months since Andrew and I have woken up next to each other. Randomly Oscar had three nights in a row of sleeping all night and that was back in February 2015 and before that probably would have been a long time too. I was very emotional all morning feeling so happy that we are heading to normality and also sad that our marriage has taken such a hammering.
I actually got grumpy with Andrew during the night as I felt like he was in my space, I'm so used to sleeping next to a little child!
Will take some getting used to sleeping next to Andrew again and retraining our brains to sleep.
After we woke on Friday morning Oscar came in then a minute later Harry woke and then Charlie can climbing into the bed. The look on wee Charlie's face when he realised that he got to have Mum and Dad cuddles was so precious, he even gave me a kiss on the cheek. A sense of normality for him knowing he wasn't the only child in our house sleeping alone. He had woken earlier and gone out to the other lounge where one of us takes Harry when he wakes and we sleep in the bed set up in there. In the morning Charlie comes in for cuddles and of course no one was there on Friday and Charlie didn't think to look in our room so he went back to his room!
We all had family cuddles, dog and cat included and then we were up by 6.20a.m, all of us! It is so weird being all up together and this is something we have never experienced as a family.  During the weekend it makes for longer days though!
Crazy to think many nights over the last couple of years Oscar didn't fall asleep till four or five in the morning and now he's sleeping for ten or eleven hours a night.

There is one significant difference with Oscar's skin this week. He has barely any eczema. There's a small patch on his arm and under his armpits has completely healed and there is visible healing happening on his legs. He even said his arm looks better than the day before. One week of sleep and a huge turnaround for his skin. He's excited about being able to wear singlets because people won't ask whats on his arms. Tonight when he had a shower he must have been examining his newly transformed skin and when I went in to give him a towel he said "Mum I don't have eczema anymore". I can't imagine how this must feel for him.   As he was drying himself he said to Charlie "Look Charlie I don't have eczema anymore". On a closer look Charlie replied "Oh wow Oscar you look amazing!"

I'm not sure how this has all happened! What a monumental week for us. We have tried reward charts for Oscar many a time without success but somehow this week it all came together. I can't even explain how happy both Andrew and I feel knowing Oscar is finally sleeping.
Most importantly Oscar is feeling good about himself and his body. It's been one hell of a ride for our wee man. He's felt pain like no child should, on and off for many years. This has made Oscar who he is. It has no doubt shaped his personality and his disposition and we wouldn't change him for anything!

We are so excited to finally feel like we are living again and functioning as a family unit.






Wednesday, June 7, 2017

SCHOOL LUNCH SUCCESS

School is fundraising at the moment for t-shirts for the children for school production. For the last few Friday's they have been making lunches the children can buy. Last week they made Nachos. Now that we are including corn in Oscar's diet this was something he could have and he was super excited about it...until the day before.
I have never seen Oscar so worked uo and anxious! We bought salted nacho chips for him to take to school and he was worried the teachers might give him the wrong flavour and he would end up itchy. He repeated this time and time again until he was nearly in tears. In the morning he didn't want to go to school. I gave his teacher the heads up and she assured him that she would make sure he got the right nacho chips. When I picked Oscar up in the afternoon he was beaming! He said he got to eat the same lunch as everyone else and now that he knows what it feels like to have school lunches next time if it's food he can eat then he wants to do it again.
The key is to have it look the same as everyone else as he doesn't want other kids asking why his is different. We even had to check whether or not the nacho chips were going to be triangle or circle shaped!
Oscar is battling bed time more than usual at the moment. I have no idea what we can do to break this cycle. We have talked about hypnotherapy but I don't want to spend all that money and it not be successful!
We will continue to battle his nightly itchy antics.

Harry's a bit itchier than usual at the moment too. It has got really cold over the last week so maybe that's why. After all these years and we are still guessing!.
He's taking a while to get to sleep and waking quite a few times in the night. Just the usual I guess.

Tonight Charlie wanted snuggles at bedtime so I climbed into bed with him and wrapped my arm around him. He placed his wee hand on top of mine and I lay with him until he fell asleep. I treasure these moments with Charlie! All the while Oscar was yelling out from his bedroom "I'm itchy".
There was no way I was going to move and ruin a special wee moment with Charlie.
As I've previously mentioned the mother guilt is very strong when it comes to Charlie so I will give it when I can and take it when he gives.
Precious cuddles with our wee people are just the best!


Saturday, May 27, 2017

A SCARY THOUGHT

Andrew came across this youtube clip yesterday. A rather alarming thought.
Turns out we are four to five times more at risk of having a stroke because we get less than seven hours sleep a night compared to someone who gets seven hours plus a night.
It scares me to think of what lack of sleep has done to Harry and Oscar's wee brain and body. Thank goodness we are getting more than two hours sleep a night now. I have absolutely no idea how we have managed to get through those dark days totally sleep deprived. How on earth did Andrew function at work!
It makes sense that we are seeing Oscar grow now that he's getting sleep.

Our wee family has come such a long way and I'm very proud of the five of us for making it to the other side.
https://youtu.be/dqONk48l5vY

Thursday, May 25, 2017

PROUD OF MYSELF!

A couple of non-eventful weeks for us. The boys have all had colds. This is the first one for Oscar off of the immune suppressants and it was just a standard cold/cough and a couple of days of not feeling well. Harry is better now although still coughing and was unwell for over a week.
A big thing we've noticed over the last couple of weeks is that Oscar is now waking up naturally between seven and eight in the morning even if he's had a rough night.  On the immunesuppressants we had to physically shake Oscar in the mornings to wake him up. Some mornings he slept in until nearly midday. I think the Methotrexate knocked him about way more than Harry. Stomach issues are a side effect also which could have been the reason for all of Oscar's stomach problems. His stomach is great now and not many complaints of sore tummys like we had. Harry  had four nights in a row of sleeping all night in his bed last week. He did wake a couple of times but settled again without a scratch attack. This week with being unwell his skin has flared and he's back to sleeping with one of us after his first round of sleep. Harry's stomach looks amazing! He's still pulling his top up and proudly showing us.  His arms are the worst affected at the moment but managable.

Yesterday Harry made a cake with his friends and Kindy teacher. When I picked him up he was so excited to show me his piece of cake. The first thing he said to his big brothers and Dad was "I made cake at Kindy". The teachers have cut it up and popped it in the freezer for times when there is food being handed out mainly at Birthday celebrations.

Last year I had a run in with a mother from Kindy who was questioning me about Harry's health. She made it pretty clear she didn't agree with the decisons we were making for our children. Unfortunately at that time we were fighting for survival and I was not strong enough to stick up for myself. I ended up crying on one of the teachers shoulders for quite some time after the mother left! As time has gone on it turns out Harry and this mother's daughter have become good wee buddies at Kindy!
Who would have thought.
Harry got a birthday invite yesterday to the wee girls party. I knew this was my opportunity to say a few things and get rid of some of the anger I have felt towards this mother. My opportunity arose this morning when the mother asked if I would be brining Harry to the party as she did kindly offer to make something he could eat. I said Harry would be coming to the party although I do find this whole situation awkward considering our conversation last year. I went on to say that she judged us very harshly without knowing about our situation or having an understanding about what we have gone through. She said she was frustrated and that she doesn't believe in alternative medicine and obviously we have different opinions on that so why don't we just let our kids be friends and get on with it. I agreed and also said I won't be bringing Harry to the party, Andrew will. I absolutely refuse to go to someones house who has been so horrible to me just because she has different beliefs than I.
At the end of the day Andrew and I get to make the decisons for our children's health and some of these decisions have been the long, hard road but the right one for our boys.

We are over the moon to see such a positive change in Oscar's energy levels. He is still itchy at bed time and battles to get to sleep. This is probably our biggest struggle with him at the moment. He's actually causing some of his eczema by scratching.  It's quite frustrating to see him do this to himself! I hope that some time soon he will learn bed is a lovely, safe place to be without the negative association it has with being itchy.


So much healing! 





Saturday, May 13, 2017

A POST FROM OUR BOYS

My name is Oscar. I am seven.
I have eczema. It hurts. Does your skin hurt?
In the night I sometimes go into my Mum and Dad's bed because I get itchy.

I have a soft toy dog called Barkey Bark. He is also seven like me.
Sometimes when I feel scared I pat Marvin our toy sheep. He is very special.

Pretty much every night I have cream on, I don't like it at all. I have to try and not itch lots so my skin will heal. I hate eczema but I have to deal with it. I can't eat cheese and bread. I am trying egg again but only sometimes. Charlie sometimes goes to cafes but I can't eat anything there so I can't go. It makes me sad. It makes me sad when other kids bring cupcakes to class and eat them in front of me.

My skin looks good now but when I was younger it was not good. I was very very itchy. I have a greenstone. I have had it for two years.





 My name is Charlie. I am five. I don't have eczema. If I did I would feel left out like Oscar and Harry. I like playing with lego sets. I like drinking smoothies, they are yummy.

Sometimes I have cream on to make my skin soft and my skin won't feel dry.
It's bad that Oscar and Harry have eczema because they itch and it makes more eczema.

Sometimes when my Mum drops me off at school I feel sad.



My name is Harry. H-a-r-r-y.









Sunday, May 7, 2017

STILL FULL OF ALLERGIES!

We got Oscar's allergy test results back this week. Everything is the same still except for egg white wasn't detected. This was previously low with the last Rast test but the intolerant test that we got sent to America was exceptionally high. I don't really know what this means! We have decided to play around with egg yolk initially and see what happens. The nurse told us Oscar's IGE levels were exceptionally high at 3019. The normal level for children is under 100. I told her that was great news as they used to be 4020!  Oscar is quite upset as he was hoping he might be able to eat cheese and yoghurt. When we told him his results he said "But I've never eaten cheese in my whole life. He actually has, four years ago and obviously can't remember what it tastes like. We have tried some of the dairy free cheeses but they haven't been well received!
Oscar has managed to start the night off in his bed all week. He still itches and wants to go into our bed but we are standing firm on him having to fall asleep in his bed at the start of the night. This has been the first week back for Term 2 and Oscar has woken up at a normal time in the morning and has been on time every day! He's still slow as a snail getting ready but seems much more settled and happier to go to school.

Harry's doing so well. His stomach is nearly healed. He is sleeping well and is now saying every night before bed that he's going to sleep in his bed all night long. Not quite the case yet but certainly heading in the right direction.
I mentioned in my last post about the incident at kindy with Harry getting his hands on a birthday cupcake. I sent an e.mail to Harry's kindy asking if they would consider asking parents to bring in non food treats for Birthdays. The staff had a meeting about this and believe the cultural part of sharing food is important so they will be keeping things the same. I challenged this answer by asking if cultural is more important than health, not just Harry's. Some weeks there are multiple Birthdays and cakes and food treats are being handed out to children. According to
the Ministry of Educations first chief education health and nutrition advisor, Grant Schofield, the average N.Z child consumes 17 teaspoons a day! Click here to read MOE's new health advisor's article
A scary thought!
Anyways long story short I ended up in tears as it is upsetting knowing my children have to feel excluded for no fault of their own. The main issue for me is I have no control in an environment where people I don't know are handing food out. That really is a scary situation for us. Unfortunately some food for our children is poison to their wee bodies and people who haven't encountered allergies don't get that.
I want children to be able to celebrate their Birthday at Kindy. I really do, but believe it doesn't have to be with food. Children wouldn't care in the least if they were given a piece of cake or a balloon.
However Kindy want to make Harry feel included so have offered to do some baking with him at Kindy that they can keep in the freezer so there will always be something there for him.
I was asked by a friend if it was me that had an issue more than Harry. I thought long and hard and realised it's both of us. He's the one that gets upset and I'm the one that has to pick up the pieces. I did ask him what he wanted when children at kindy are eating birthday treats and he replied with "I want to eat cupcakes too".

I feel like everyday we have to fight to keep our children healthy. After all these years you would think we would be well accustomed to this. I guess it has mostly become routine but every now and then we have to go into battle a bit harder than usual. I'm sure anyone reading this that deals with allergies on a daiy basis will understand this and know how isolating it can feel.
At the end of the day we have to do what we can to try and keep our children healthy and happy.



Tuesday, April 25, 2017

A CARELESS EASTER BUNNY

We have been so lucky over the last few years when it comes to social situations with food. There has been the odd time where the boys have not been able to eat food but generally we avoid situations where we have no control over the food. It's not worth it to the boys health.
We have been to two birthday parties over the last couple of weeks where our lovely friends have asked about foods for the boys and have provided food they can have and even baked cake safe for the boys. Thank you Nic and Michelle! It means the world to us that the boys are not felt left out and when people go that extra mile it brings a happy tear to my eye.
Sadly we have had two encounters where both Oscar and Harry have been excluded last week. I don't expect others to not bake because of allergies but If it involves my child and means they are going to be in a situation where they are left out and feel sad then I would prefer to be asked so I can at least provide a safe alternative for them.
This happened at Kindy at the end of term. It was a child's birthday and the parents  brought in cupcakes for all of the children. I walked in at Mat time and Harry was holding a cupcake! I quickly grabbed it off him and he was so upset. I carried him out of Kindy to the car balling his wee eyes out all the way to the shop. He finally stopped when I brought him a lemonade iceblock. I just don't understand when it became acceptable to feed other people's children without asking their parents.
Oscar's class also made chocolate chippie biscuits on the last day. I saw the ingredients sitting on the table and questioned his teacher.  Sure enough they were baking something he couldn't eat. I ended up driving home then back to school to give Oscar little dark chocolate bars that he could have while everyone else ate the biscuits. As soon as I walked in to his class his face lit up knowing he got to have a treat. He did confess at dinner time that he felt sad while his class were eating the biscuits because the other children were asking him why he was eating chocolate. He also said the biscuits were much bigger than his chocolate!

Easter Sunday and the boys ran outside to go on a hunt for lollipos and dark chocolate. This year Easter Bunny was most organised ordering dark chocolate whittakers kiwis with the online groceries well in advance. They were stored away until Easter morning. Unfortunately Easter Bunny didn't check the kiwis and they were all milk chocolate! Yet again I grab it out of Harry's hands and Oscar's. As you can imagine tears all round. Charlie offered Oscar one of his mini dark chocolate bars, what a caring wee brother.
So in a nutshell leading upto Easter and Easter Sunday was quite the disaster!

At bed time Charlie has started crying saying he has a sore stomach and needs patted to sleep. He's waking up also throughout the night which is totally out of character and wants the hallway light on even though he has a night light on in his room.
Charlie hears the requests of the other two and knows we pat them to sleep and he wakes up in the morning seeing each of us with Oscar and Harry. He must feel so leftout!
At a Birthday Party we went to recently Charlie was putting on his plate all the foods that Oscar and Harry were allowed and nothing else. I reassured him that he could have all the food and he was so excited!

We had another specialist appointment this week. Just the usual "Keep using this steriod cream for this amount of time and you will have no problems". We also got another allergy blood test for Oscar but haven't got the results back yet. He screamed the place down and tried to run out the door! A good tactic to not have to wait! He got his blood test straight away and was happy again within minutes. He got yet another certificate to add to his collection.

Looking forward to getting the results back!


Slowly healing stomach



Saturday, April 8, 2017

MORE HEALING FOR HARRY

We have been working so hard to try and get the big eczema patches on Harry's stomach to heal. As previously mentioned he continually scratches and his stomach hasn't had a chance to heal in months. I have started putting a drop of Manuka Paint with his cream like I have done with Oscar and we are finally seeing some healing happening. I hope this continues for Harry. Surely the time has come for our wee man to have some days off from being itchy.
When he wakes in the morning he proudly  pulls up his top to show his brothers
his stomach. Suprisingly they are stoked for him and share his excitement.
Harry has told me he's going to show his kindy teachers too, although I don't think he has!
I can't wait to see how the next few weeks go for him.

Oscar is doing well still. Just the usual itchy bits, particularly behind his knees.
We are looking into hypnotherapy for Oscar. It would be great for him to be able to go to bed without itching. Bed time for him means itch time even if visually he doesn't look itchy. This has been Oscar's routine his whole life so we need to figure out a way to break the habit and for Oscar to learn bed is a lovely and nice place to bed. As I've already said Oscar at the age of 71/2 doesn't know how to self settle. Maybe we need to seek help from a baby whisperer!

One more week of school then holidays for two weeks. I think Oscar has had about three days off this term. His attendance this term by far is the best since he started school. Long may it continue.

The Sloan boys line up for Moisturiser time.
HEALING! 





Sunday, March 26, 2017

THE PRICE OF REDUCTION

How can it be that some of the foods we buy for the boys have so many ingredients taken out of them, the product is half the size yet costs so much more than normal!
For example a regular loaf of bread for us on special we can buy two for $5 and weigh 700 grams. A loaf of wheat, dairy, soy, egg free bread weighs 400 grams. The pieces are tiny, whats worse is Harry doesn't like crusts so we have to cut them off, leaving the most smallest bits of bread! We worked out that one slice is 62 cents per slice and our bread if on special per slice is 25 cents!
Now for the milk...
A 1L of standard milk here in NZ is $2.80
1L of rice milk is $3.40 on special. We spend $23.80 a week on milk as we go through a litre a day. Fortunately for us the boys don't like coconut yoghurt as that's very expensive too!
I don't think it's necessary continuing with comparisons. Bread and milk alone are great examples of why our grocery bill is 60% more expensive than if we didn't have to buy 'safe foods' for the boys (yes we wen't through some of our grocery receipts and worked it all out!) It does irritate me that we have to spend so much in order to try and keep our children healthy. I despise doing the groceries. At the end of the day we can't put a price on health and that's really all that matters. One day we may not need to buy all these foods and it will feel like winning lotto!

Oscar's skin is looking really good. I'm still using the manuka paint and it's helped remarkably. Bed times are still a battle. He fights with himself to fall asleep, tosses and turns and itches and works himself up.
Oscar still needs to learn how to self settle. He's turning eight in October and still doesn't know how to do this because we have never been able to leave him to learn how to do this.

Harry's skin is still much the same and I have started the manuka paint with him the last couple of days. Because he has lots of raw patches it really stings him initially.
Fingers crossed we see some improvement. We have the specialist in a few weeks so I would love to see Harry's skin healing before being told he needs stronger steroid creams!
On a positive Harry is falling asleep within minutes at bed time and lasting anywhere between two to three hours before having an itchy attack. Crikey that's how much sleep a night he was getting last year!

I dream of the nights when both Oscar and Harry will be able to sleep all night long. 

You think I would know by now to not buy white clothes for Harry!

Boys beead and our bread.  Such a size difference

Thursday, March 9, 2017

A RECOUNT OF LASTNIGHT...AND MOST NIGHTS

6p.m shower time for Oscar- yelling and crying because the heat of the water hurts his skin and the pressure has to be turned to low.
Out of the shower for pat drying, the rubbing and friction of a towel on eczema skin can cause eczema!  Creams should be applied within a few minutes of getting out of the shower/bath as when your skin is damp it helps to lock in the moisture.
Moisturiser with a tiny drop of Manuka Paint is then applied in a downward motion in the direction of the hairgrowth - rubbing back and forwards can block hair folicles and can create unnecessary heat to the skin.

At this stage tears fall from Oscar's face, he is screaming and jumping up and down as the creams sting his body,

6.30p.m I climb into bed with Oscar (in our
bed of course) It takes an hour of patting to get him to sleep.
7.30 p.m Asleep!
9.55 Oscar stirs and starts itching even though he's asleep.
10p.m Awake and itching all over. His hands are continually moving from one body part to the next as he trys to find relief  through scratching.
"Pat me on my leg, up a bit, under my arm, my leg, my arm..my other arm".
 I can now hear Harry crying out. Andrew's night shift has just begun!
10.35 Still itching
10.40 Starting to relax, nearly asleep maybe?
10.42 Nope more itching!
11p.m Asleep
4a.m awake and itching
4.48a.m still itching
5.15a.m Asleep
7.45 Awake thanks to Harry screaming!
Sleepy still and dozing.
8.30 a.m Back into a deep sleep
9.45 Awake for the day

Andrew has taken the first period off school today so Oscar can sleep in with me while Andrew gets Charlie and Harry sorted for school and kindy. Charlie's been late for school a couple of times this week due to Oscar needing to sleep in. It's not fair for Charlie but I can't be in two places at once!
Oscar's night was a good night for him sleepwise.  Lately he has been falling asleep at 11p.m, waking at 2a.m for three hours of itching . Around 5a.m he usually falls into a deep sleep and I wake him at 8.15 for a mad rush of getting him ready and out the door in time for school
No wonder we are often late!

In nine hours time we will repeat all of the above!

Tuesday, March 7, 2017

SWIMMING..AND A TRIATHLON

We found out last week the school pool is salt water not chlorine. We were hopeful this might be ok for Oscar's skin. He was so excited at the thought of playing in a pool and wasn't at all apprehensive getting in. The smile on his face was worth a million dollars. After a few minutes Oscar said "My skin doesn't hurt".
Oscar and Charlie had a wonderful time playing in the pool and it hasn't made Oscar's skin itchy, or perhaps I should write it hasn't made Oscar's skin itchier than it is.
He's very dry, spotty rashy on his stomach and bottom and has impetigo blisters again  on his face. This is a sign Oscar is run down.  He's having unsettled nights falling asleep late and waking lots to itch under his arms and behind his knees. Despite all this he participated in the school triathlon. He even walked through the pool for the swim part. Initially the plan was for me to go in the pool with him but his teacher didn't give him time to think about it, quickly getting him in the pool, holding his hand until he got to the end and he walked the next length on his own. He was so proud of himself when he finished and of course I was a very proud Mum times two as Charlie also did the school triathlon for the first time and it was great watching him cross the finish line.

Oscar was exhauated when we got home, stripped off his clothes and jumped into our bed watching dvd's for the rest of the afternoon.
He's so itchy at the moment. I think it's a combination of a few things. Dry skin, coming offf the immunos, late nights - it becomes a vicious cycle.
I spoke to Oscar's teacher today to let her know he's not sleeping well and she said she noticed yesterday he was a bit day dreamy and wasn't concentrating as well as usual. Getting Oscar out of bed in the morning is a misson. I literally have to drag him out of bed! Hopefully as it gets cooler in the coming weeks his skin might get better, who knows!

Charlie is doing well at school and is so eager to learn. He is asking us how to spell words all the time and now wants to do lots of maths equations too. He is way more motivated than Oscar has ever been and I put that down to one thing only. Charlie sleeps all night long and his body and brain rests and recovers ready for a busy day! It's so wonderful watching him learn and he enjoys school so much.

Harry is still much the same. He's had a few better nights over the last week sleeping for longer than usual. The strange thing is there is not one scabby, itchy part on Harrys back as he can't get to it to scratch! The itch is just too strong still and he can't help scratching until he bleeds. To think Harry's entire body used to be like this! That really does put things into perspective.
Harry and Oscar had their routine blood tests this week. Oscar had to be jabbed twice as they couldn't get blood the first time. It's very upsetting for all when this happens but the nurses were amazing. We even left with a bag of goodies for the boys to play with. When we got home they got some of their soft toys and role played giving them blood tests and medicines.
The nurses also gave us tubigrip big enough to try on Harry's stomach. It actually worked lastnight as he could still pat his stomach but couldn't pull the scabs off. It won't take long before he pulls it down though I imagine.

Here's hoping to some less itchier days soon.

Harry's arm

Ouchy stomach 

Oscar's itchy stomach and underarm 



Role playing their lives 

Triathlon finished! One proud boy

Charlie just finishing the triathlon!

Harry in his tubi grip dress!

First time in a pool in five years




Thursday, February 23, 2017

TWO ITCHY!

Harry's much the same as last week, if not worse. I want to fix him so badly but I don't know how. When he gets tired he itches more. This is usually about 2p.m or when I'm cooking dinner. A very convenient time to itch while I'm preoccupied! Harry's started hiding again to itch too.

Last week driving into town Harry scratched his arms to the point of blood dripping from his arms! You can imagine what a sorry sight we looked walking into the chemist. Harry was most impressed when he saw yellow bandages there! Yellow is his favourite colour. We've gone through another $30 of bandages in the last six days. I hate to think how much we've spent on dressings and bandages over the last year. We tried to bandage Harry's stomach too and used gladwrap over it so he couldn't undo it. It actually worked but he ended up in a rash from the gladwrap!
On a good note, although Harry isn't sleeping well he's waking up in a reasonably happy mood. He had a cold last week which he kindly shared with me but he's bounced back quick. This is another reason he's probably itchier too. We are trying wet wraps on Harry's wee arms at the moment and I'm suprised as they have lasted the longest on his arms out of all the bandages. Hopefully they feel more soothing for him.

It has finally been hot here over the last week and I think this has made Oscar itchier than usual! He's had a few rough nights of not being able to get to sleep and finally falling asleep close to midnight with regular intervals of waking through the night. It's only a matter of time before he gets sick..or is it? I just assume this but now he's off the immunos things might be different. He's back to watching you tube throughout the night to distract and calm him down as well as ice packs on the itcher places.

Charlie started keyboard lessons this week and loved the first class. It's so neat seeing him enjoy learning. Long may it last.

Andrew and I just keep battling through this parenting gig. We have had brief periods of less itch lately and that has been wonderful but I don't allow myself to be too optimistic about it as I know that is exactly what it is. A brief moment of things being slightly easier as another wave of itch heads our way.  It may sound like a negative way of thinking but I don't mean it to, it's actually our reality and I have accepted that. I don't like it one bit but after six years we really are used to it!
I just wonder how long it will actually be like this for.
All glad wrapped up!

Another bloody car ride

Monday, February 13, 2017

MR BANDAGE BOY - AGAIN!

Yip, we are back to bandaging Harry's arms and now his stomach! Although this isn't an easy process! The patches on Harry's stomach have got worse as he's continually itching at them. They are pretty much open wounds that I'm really not sure how to care for. So far nothing is working, or nothing has time to work as it starts to heal, only to be pulled apart. So dam frustrating!
I don't know what is going on with his wee body. All I know is I'm Pissed off right now. Yes, Harry's come such a long way and is doing well compared to this time last year but how long does he have to keep putting up with this!  Eczema hurts, it itches, it weeps, it burns, it's debilitating for Harry and heartbreaking for Andrew and I basically watching on like a spectator.
I'm at a loss right now !

Wednesday, February 8, 2017

DRUG FREE!

It's been a busy few weeks so sorry for no updates. 
Exciting news on the Oscar front, he's one week drug free! When we told Oscar last week we were going to stop his drugs his whole face lit up! It really is one massive milestone for us and a step closer to going to Australia on a celebratory holiday of healthy children! A year and a half on immunosuppresants and now finally..and hopefully Oscar will be off of them permanently. I feel like this is a crucial time in making sure we are so so careful in what Oscar eats and really caring for his skin as best we can. 
In the next couple of months we will be able to retest his allergies too.
Oscar's stomach seems to be settled at the moment. We are sneaking Metamucil  into his smoothies so I'm hoping this will help. 

A big week for Charlie last week starting school. He was so excited to start, literally running to class where as Oscar was crying walking to class!
Charlie is loving school which is wonderful to see. Strange having two at school now. Harry's started three days a week at Kindy this term and now that his health is better I will be able to finally have some down time!
Harry's skin although looks good, has random itchy patches pop up. Then he itches them until they are raw and bleeding, making them obviously worse. To think his whole body used to be like that. He's waking again in the evenings and through the night. Last week he had three all nighters in a row but has been a bit better since then.
He had an allergic reaction last week to conditioner. I assumed it would be safe on Harry's skin as it was supposedly natural! He was awake all night itching and had a prickly red rash all over him. He has just recovered from the reaction in the last few days. A very silly mistake on my part!

It was my Birthday a couple of weeks ago and Andrew and the boys thought it would be lovely to surprise me by giving me a bungy jump! I didn't think it was a lovely present to say the least, in fact when I opened the card I said there was absolutely no way I was doing it. The boys had made signs and were very excited so when I said no Oscar started crying telling me that he has to be brave when he has blood tests so now it's my turn to be brave. Talk about a guilt trip! I knew there was no backing down once he had said that. While waiting for my turn the boys kept picking up toy sheep from the gift shop and were bringing them over to me telling  me to pat them and it will help me to feel brave. I wish I could say it helped. I don't think I've been so scared in my life standing on that ledge getting ready to jump. I cried before, during and after! We ended up buying the sheep called Marvin so that if one of us needs some help with being brave then Marvin will help. Marvin has an ear missing already as Charlie dropped him within five minutes of buying him, although having one ear won't hinder Marvin's bravery powers. Oscar has even taken Marvin to school this week and before we got out of the car Oscar put his hand into  his school bag and gave Marvin a pat!
I did get another present for my Birthday. A little kitten! Another brave move on Andrew's part. Thankfully the boys seem absolutely fine with her... However I'm allergic! I'm hoping over the next few weeks I will adapt to her. 

I have resettled Harry twice tonight and Andrew and I thought it might finally be safe for bed together. Andrew said "How long will we get to sleep next to each other?". Thirty seconds later Harry wakes again!  Andrew and Harry have gone to sleep in the other lounge and no doubt Oscar will make his way in here soon. So although things are so much better for us we are still playing musical beds and the boys are still needing pats in the night to help resettle them. We have come ao far that right now I have no right to complain.

I will be sure to update next week now that we are back into the school routine!
Mr School boy!




Harry having cuddles with Penny Lane


Monday, January 16, 2017

TOTAL ELATION

Harry's not itchy. He honestly isn't! We were in desperate need of a reprieve and it came. As I said last time we have started Harry on Skin Friend and his immune suppressants have been increased too. We also decided to give Harry's worst areas a few days of low dose steroid cream -that's how desperate we were! Andrew and I both agreed one round of a few days and that was all. I think the combination of the above has worked in helping Harry immensely.  The last dose of steroid cream was six days ago and no rebound thankfully. We certainly won't be using it again and we are thankful that there were no side effects. I felt sick and guilty using the cream but Andrew, Harry and I were at an all time low.
Harry's amazing at taking the Skin Friend too so that makes medicine time a breeze. Gone are the days of Harry vomiting meds back up or both Andrew and I having to restrain our poor baby to get meds into him!
So, Harry's skin... I don't even know how to describe it. It looks like normal soft skin - although there is a lot of scaring his skin feels soft and so strange to touch. His skin has felt like a combination of wet weeping, sticky blood, burning sandpaper for the last 16 months and now when I touch Harry I get goosebumps! It's so exciting.
Harry is also sleeping through the night for the first time in his entire life!  He's had six nights in a row so far. When he woke up yesterday he examined his leg and said "Remember a long time ago when I had blood all over my legs?". I asked where it had gone and he told me it dried up.
I'm petrified Harry will wake up and be itchy but this is the reprieve we needed, even if it's short lived. We will enjoy having a happy, healthy Harry (minus the forever cough) while we can.

Oscar has had a rough week. Andrew promised the boys hot dogs and chips for dinner and we thought the fish n chip shop had gluten free hot dogs. Unfortunately they didn't so to avoid disappointment Oscar had a mini hotdog.
He woke up the next morning with vomiting and diarrhea. It was so violent that he couldn't make it to the toilet a couple of times and was also sick on the carpet and couch. His poor wee body was poisoned! Andrew was terribly upset that he bought the hotdog but this whole journey is certainly trial and error.
Crazy how something so small can make someone so sick. Oscar has had so many bouts of vomiting and diarrhea over the last year that I wonder if they have been food related or cross contamination and we haven't realised.
Andrew and I went to the doctors this week without Oscar to document his reaction and discuss where to next as he's still getting sore stomachs and constipation. She's going to get in touch with paeds again at the hospital. In the mean time we are increasing the lactulose dose and trying to increase fibre to keep Oscar regular to see if that helps any. We have decreased Oscar's immunos yet again and now have one pill to go! After a couple of months of being off of them Oscar's allergies will be retested. Before Oscar went on the immune suppressants he was allergic to pretty much everything, food and environmental. The purpose of being on immunos was to dampen down Oscar's immune system as it was over reactive. It's now had a holiday for a year and a half, resetting itself so we will be able to finally find out what Oscar's real allergies are, if any!

On a final note and absolutely nothing to do with skin, illness and allergies, Harry mastered how to ride his pedal bike this week! Proud parent moment. We officially have a biker gang of boys now.

Check out these legs. ..no blood or bandages!
                       Harry's beautiful skin!

Wahoo! Harry rides his pedal bike for the first time.