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.


Friday, January 6, 2017

HAPPY NEW YEAR

Another year ticks over. We are now six whole years on this journey of trying to get our children itchy free and healthy. Will 2017 be our year of achieving this?

We had a lovely Christmas catching up with family and friends. The boys got kayaks for Christmas so we have had a few days playing at the lake, even Harry has had a wee play in them.
We got a heat pump installed a couple of months ago to keep the bedrooms cool in Summer. Last year it was 35 degrees inside, not ideal with itchy children. Yesterday was particularly hot so it was just wonderful having the heat pump on keeping us cool. Although it didn't help Harry sleep any better. He's a wee mess at the moment. We've just started him on Skin Friend and his immune suppressants have been slightly increased so I eagerly wait to see if it helps. Harry's also taken to caring for his skin. I checked on him at bedtime the other night and he was on the floor with tissues in his hand dabbing the blood from his legs. Andrew got Harry's bandages ready a few days ago and Andrew went to get the scissors and Harry had started bandaging his own leg!


My news resolution is to work harder than ever to get the boys well. That means being super strict with foods, keeping on top of supplements, caring for the boys skin. Actually I do most of this anyways but I want to follow the eczema diet as much as we possibly can. 
Lastnight was a good start. All three ate leeks! I sauteed the leeks and added maple syrup and salt and it slightly caramelises the leeks and makes them sweet and they really are very delicious.

Oscar has impetigo and a croup cough and is constipated again this week. How can he be run down when it's the school holidays? He slept nearly the whole day away as his wee body fights to get better. We have reduced Oscar's immnos by half a pill this week. So close to being drug and steroid free! 
 Harry has yet another cold too. Although it just seems to be a forever cold with a few days in between of being better. Charlies healthy thankfully! He told us today he is different from Oscar and Harry becasue he's not itchy. 
We also celebrated Charlie's 5th Birthday last week. We had a wonderful family day out to a Jarassic dinosaur safari and then had cake at the lake with family.

I thought having Andrew at home would be a huge impact on Harry's skin healing but he's just so quick at tearing apart. If anything we have probably reduced the amount of times he's done this as I've been sitting next to him in the car!
Hopefully Harry has a reprieve soon. Its been a long time since the last. Harry, Andrew and I could do with some sleep.


Practicing in the kayak on Christmas morning 
Dinosaur safari park adventures

Mr '5'

Harry bandaging himself!

Harry and Oscar chilling out with a well deserved lollipop watching the medical centre's I.Pad. No tears today from Oscar and blood tests done first try thankfully

Harry this time last year

Thursday, December 22, 2016

HARRY HOUDINI

The holidays are here thankfully and it's so nice having Andrew at home to help out.
Harry isn't doing so well at the moment. He's barely sleeping, frustrated and grumpy. Today he had a three and a half hour sleep during the day.  His poor wee body is trying to play catch up.
Harry has figured out how to take his scratch me not sleeves off! Andrew watched him doing it. He puts one hand between his knees and pulls until he can get his arm out. He's also worked out how to pull the hand sleeve back too! Harry's very proud of his new found skill, proudly announcing that he can take his sleeves off all by himself.
I found blue bandages the other day while I was at the chemist getting more dressings and I couldn't resist buying it. Harry was so excited and said "I can show my kindy teachers!"
I've been sitting in the back of the car when we go for drives out and about to pat Harry when he gets itchy as this is a common occurrence in the car! Doing this has definitely reduced some damage.

Charlie had his very last day of Kindy on Tuesday. He had his special birthday mat time last week. It was so cute watching him on the couch confidently talking in front of his friends. I can't believe he's nearly five. How did that happen so quickly?

As I write this I have Oscar on one side of me naked, wrapped in towels and Harry on the other side of me and it's 9.30 in the evening. When will this end? When will our children sleep normally? I remember thinking when Oscar was two years old and itchy all over and not sleeping, that before I know it he will be five years old, at school and he won't be itchy. Five years on and we are still on this journey! How naive I was.
It's fair to say we are in survival mode again. I don't know how we do it but we do. We have to. I'm looking forward to our next reprieve whenever that may be.

Well Merry Christmas to everyone reading my blog. I wish you a wonderful day with those you love.

Thank you for taking the time to check in on us. It really is very humbling to see so many people taking the time to read our blog. xx
One very sore neck

Distracting the itch

Blue bandages 

Harry hiding under the table to scratch

Charlie's special mat time at Kindy

A rare sight.. Andrew snuggling with Charlie to get him to sleep.  Doesn't suprise me seeing Andrew asleep too!


Sunday, December 11, 2016

SICK OF THE SIGHT OF BLOOD!

A mentally exhausting week. I feel like I have let my wee men down because I can't fix them. What else can we do to help them? Andrew and I work so hard every day..and night to care for the boys skin, prepare safe foods for them and to keep them comfortable and happy as possible but it doesn't seem enough. Oscar's spotty all over his body except for his face. He's having trouble getting to sleep, staying asleep and is very non-coping. The smallest of things upset him. Frustration and tiredness set in very quick. Oscar also had Thursday and Friday off school with a nasty cough and temperature.

Harry is still attacking himself.  It sounds so horrible writing that but I don't know how else to explain when he starts itching. It's not really an itch at all. The concentration and effort he puts into it. I've lost count of how many times he's made himself bleed this week and how many times I've cleaned blood off the carpet. I actually want to scream at him to stop as it upsets me seeing the damage he's doing to himself! Yesterday once he saw the blood on his legs he started saying "Shiver me timbers" over and over again followed by "Shit, shit!".

Andrew has two more days of school next week then is home for six weeks. It will be great having another set of eyes and hands to help with Harry.  Fingers crossed between us we will be able to reduce his scratching and promote some healing.

On a brighter note,  we put up our Christmas tree this week. We have three boys very excited about Christmas.
My Dad and his partner Michelle stayed with us last night and we had an early Christmas with them. Today we also took the boys to see Santa. Harry wouldn't go near him! Charlie wants lego for Christmas, Oscar wants lego and a Hamster, Harry wants a helicopter and I want itchy free children!

A rough week but thankfully finished off with a lovely weekend.
"Shiver me timbers..shit" 





Monday, December 5, 2016

BACK TO BANDAGES

The ouchy bits on Harry's wee feet and arms are just not healing. They look like they are going to scar so we've gone back to bandages to try and help his skin. Sounds like an easy fix but with Harry getting itchy,  he does all he can to try and get to the areas that he wants to scratch.
I went to the chemist today to get more bandages. We walked in and the shop lady said "Oh dear has he fallen off his bike?"
I had to giggle considering that's what I wrote in my last post!
Harry's all bandaged up with dressings and a very cool green self sticking bandage. I have no idea if it will work, however I'm hopeful.

Oscar's very itchy again this week. As I write this at 9.22p.m, he's sitting next to me on the couch. It took an hour and a half to pat him to sleep for all of twenty minutes and he then came running out to the lounge screaming "I'm itchy".

The paed appointment was good on Friday. He said the only thing we need to watch out for with Oscar having horse shoe kidney is urine infections, kidney stones and to make sure he's hydrated as this will help to avoid these occuring.

On the weekend Charlie told Oscar that he's glad that he's not him because he doesn't want to be itchy and have eczema. Oscar got so upset and told us that he hates himself because he has eczema.  It's so sad to hear him saying this, it breaks my heart.

Harry had kindy today so Charlie and I had Charlie and Mum time. When I tucked him into bed tonight he told me he loved Charlie and Mum time. It really is lovely spending one on one time with him.

Andrew has been unwell for the last five days. Probably end of term/year sickness combined with the extra stresses of home life. Not being able to sleep it off doesn't help!

It seems we are in for another challenging week with Oscar's skin and sleep..
And who should appear as I finish this? Harry! The night shift has officially begun.
My wee green mummy!

Itching...

More itching! Green bandages haven't worked tonight!

Too itchy to sleep

Charlie sleeping like a non itchy child and oblivious to our night time craziness