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

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!

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