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

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

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 !

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

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.

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

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!

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" 

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 

NOT SO SIMPLE CAR RIDES

A car ride for most is uneventful. You get in the car, drive from A to B and not much happens in between except for perhaps turning up the radio and obviously following the road rules. If only it was that simple for us. Firsty I have to make sure my precious cargo are in their car seats safely. Sometimes needing to double check as Charlie has recently learnt to undo his seat belt!
We drive for a few minutes, sometimes ten if we are lucky before I hear the hacking of skin being teared apart. Then the sound of screaming as Harry scratches to the point of bleeding.  There is nothing I can really do to help him either until we get to our destination. Sure enough I open his door to the sight of blood on his legs, arms and wee fingers and understandably Harry's beyond upset.  A drive in the car is the perfect time for Harry to scratch. I have thought about putting his scratch sleeves on for car rides but he gets so upset when we put them on but if it saves his skin it's worth it. My ears are already damaged from Harry's screaming so I'm sure another round while putting his sleeves on won't do too much harm. Andrew pointed out tonight that it looks like Harry's fallen off his bike and grazed his arms and legs. Perhaps that could be my new line if random people ask about his skin!

Oscar's ok for small trips in the car but anything too long then he gets a sore bottom from the eczema on it. His body has itchy spots all over it at the moment. We reduced his immunos last Thursday by half a pill so highly likely this is the reason. Fingers crossed he doesn't get any worse. Oscar's only been at school in the afternoons this week as the children have swimming lessons in the mornings. Oscar unfortunately doesn't want to go swimming and it's good he hasn't with his skin the way it's looking. He's afraid of the water making him itchy and highly likely it would but we didn't want to say no if he wanted to try.

Oscar woke this morning to a swollen and hard hand where he was stung. We iced it again and gave him some antihistamine that seems to have helped. Strange it hurts again six days later.

We have a paediatric follow up appointment tomorrow for Oscar's stomach issues, or lack of thankfully.

Two weeks until Summer Holidays. Fingers crossed Oscar can make it to the end without getting sick or itchier than he is at the moment.

A wee opportunist at work! 

Charlie being a kind brother by patting Harry

Itchy spots...

And more spots!

OSCAR'S FIRST BEE STING!

We were just saying not so long ago that the boys thankfully haven't been stung by a bee yet. Well we spoke too soon as Oscar got stung on Friday afternoon while inside playing at the lego table! He came running towards me waving his hand about screaming "It's a bee" over and over with a few swear words mixed in. I couldn't get the stinger out initially as Oscar wouldn't stay still but eventually  I got it out and grabbed a bag of frozen vegetables out of the freezer and sat with Oscar trying to calm him down, while watching him closely for any sign of reactions. For anyone that has children with allergies you will be able to appreciate how scary this was. My heart was racing, I was sweating - I think perhaps I had the reaction instead of Oscar!  Other than being upset and having a sore hand Oscar was fine. What a relief.

Charlie asked Oscar what it felt like to be stung and Oscar replied "It stings like shit". I would have to agree with him on that! He also said that he hates bees even though they make honey and that they are even more disgusting than brussel sprouts.  After everyone settled down I poured myself a well needed wine.

We nearly got to four weeks in a row of school but Oscar had Friday off. He was a bit run down and tired and had the beginnings of Impetigo again. There was one little blister above his lip that we have managed to get onto very quickly so it hasn't spread. Oscar has eczema spots on his legs and bottom still. Enough to annoy him, but not enough for me to complain about. He slept in until 9:30am yesterday morning and had an amazing sleep. Just what his body needed.
Oscar also had a Birthday party yesterday afternoon and as I was packing food for him to take he told me there is another boy going who also has to take his own food and that he's glad he's not the only one. He must feel so left out sometimes.

On Saturday Andrew and I forfeited our childfree time to spend time with Charlie together. We took him into town for ice cream and I sat in the back next to Charlie playing 'eye spy' with him there and back. I can't remember the last time the three of us spent time together so it was just lovely being with our wee Charlie Bear.
 Charlie has had a happy week and is giving both Andrew and I more cuddles than he previously has so this is absolutely wonderful.

Harry's skin still has lots of scabs and itchy bits on it, mostly the usual places of one foot, legs and arms. He has been unsettled in the night but was ok for Kindy on Friday and today as I got him dressed he asked me to put trousers on him so his teachers wouldn't see his sore skin.
Harry had a conversation with his Kindy teacher the other day and she was telling him that she also has boys. Harry then asked her if her boys are itchy!
During the week Harry had an itchy attack in the car on the way to the supermarket. I had to clean him up best I could before going on.  He must have looked a terrible sight bit no one approached us..luckily as I was not in the mood to be pleasant!

We had a unique experience this week of being filmed for a series of documentaries
being made about the impact of eczema on families. It was a bit nerve wrecking and the boys were suprisingly very well behaved, except for Oscar kicking Charlie at one stage! Thank you to Gareth Moon for being so unobtrusive and for listening to our story with genuine care and interest.

It's now eleven p.m and Oscar's finally fallen asleep after a restless evening of being itchy. I'm pretty sure strawberries are the culprit this round.
As the saying goes 'Sleep while your baby sleeps or in our case 'Sleep while the itchy boys sleep'

Itchy attacks in the car 

Itchy attacks in the morning 

Itchy attacks in the afternoon

Charlie enjoying a treat while having Mum and Dad time 

Ouch!

A TIRING WEEK

It's been a hard week emotionally with Charlie being sad and then adding Harry being itchy...then Oscar having a flare up too!
Oscar's flare up is small in comparison to this time last year but it's still itchy and still hurts him. I'm not sure what's caused it but he did have half an orange the other day that may have been the culprit. We spent most of Wednesday night awake watching you tube. We've been late to school most days this week however Oscar has attended every day which is great.  On Wednesday night Oscar lasted until 3 A.M in his bed and when I went in to check him as he was crying he was standing in his room with his p. j pants down at his feet and his hands were up his top scratching away! He was trying to scratch all over at the same time. I can only imagine that it feels like multiple sandflies biting all over his body.
Thankfully Oscar is still happy enough during the day and lastnight he slept all night in his bed! He was so proud of himself and his smile was beaming from ear to ear this morning.  He also told me when he woke up he was surprised as he was in his bed!

Harry's wee body has still been itchy this week, particularly his legs and one foot. He usually starts itching straight after breakfast- the most busiest time of day for me getting myself and three little people ready to get out the door.  It's so hard to stop him especially when he gets worked up and starts screaming as he makes himself bleed.  On Tuesday night Harry was itchy to the point of not being able to sleep even with sedating medicine and started crying, the kind of cry that let's you know your child is in pain. I snuggled him into me and we dozed for the rest of the night.  This is the thing that frustrates and upsets me the most, we can't take the boys pain away with a magic wand. To get better from a flare they have to endure pain. It's so unfair. On a good note Harry is starting to come right from being so uncomfortable for the last couple of weeks and had a successful kindy day on Friday without an itchy attack.  He's also been back in nappies so hopefully next week we can continue toilet training.

Charlie Bear has had 100 kisses every day this week and it brings such a big smile to his face. I have cuddled up with him in his bed reading to him most nights and I told him the same story I shared with him when he was sad at the park about the day he was born. It was a beautiful Summer morning when Charlie was born and Andrew was the first to give him a cuddle then when I got to cuddle him I cried because I loved him so much. When I told him this at the park he looked up at me and I new I had triggered something in him and when I retold him this story in bed he flung his wee arms around me and held on tight to me for awhile. When Andrew left for work on Friday morning Charlie ran up to him and gave him a big kiss and cuddle. Charlie doesn't usually show too much affection so for him to do that is such a positive sign and hopefully this is a sign of happier and secure times for Charlie.

Andrew and I have been lucky enough to have two afternoons of child free time this weekend.  Thank you to Andrews Mum and sister for visiting us this weekend and for looking after the boys for us and also to our lovely friend and neighbour Mel for entertaining the troops this arvo so Andrew and I could go for a bike ride. It gives both Andrew myself a small sense of normality being able to spend time together. Something we've barely been able to do over the last couple of years.

Early morning itchy attack 

Ouch!

Too cute to not put in. Prince Charlie off to a birthday party 

Harry asleep in my arms after kindy 

"YOU DON'T CARE ABOUT ME ANYMORE"

Six little words that came out of Charlie's mouth, six words that broke my heart on Monday. Most parents wouldn't have cause for concern and most likely shrug it off, however for Charlie there has been many days where he's had every reason to feel this way. How on earth can we share our attention equally between three children, two of whom have health issues and demand more time of us for no fault of their own.

Our day started fine but at some point in the morning Charlie's mood changed. He got upset on the way to the park as he wanted a toy Harry was playing with and I had said no. Once we were at the park he seemed fine. Harry wanted a turn on the seesaw so I told Charlie three more pushes then I would help Harry.  I turned back to see Charlie trying his best to hide in a bush.
I knew something was up as this is something he wouldnt usually do.  I tried to turn the situation into a game of hide and seek but he wouldn't budge. When I asked Charlie why he was hiding he told me over and over "You don't care about me anymore. The only people who get cared about in our house are Oscar and Harry and no one cares about me". I felt sick hearing these words. I tried to reinforce to him how much we love and care about him but I actually understand why he feels this way. Later that day when I was preoccupied with Harry, Charlie took himself outside and sat himself on a rock looking miserable.  When I checked on him we ended up having the same conversation we had at the park. I was at a loss as to what I could or should say to make him feel better so we sat having a cuddle - until Harry started crying as he had scratched himself to the point of bleeding.
Andrew came home early from work and took Charlie out for Dad and Charlie time.
Andrew also picked Charlie up from Kindy yesterday and again they spent the afternoon together.
From here on in we're going to make every possible effort to have more one on one time with Charlie and give him lots of extra kisses and cuddles so that he will hopefully feel like we do care about him.
We love and care about Charlie so much and feel gutted that he is feeling so sad at the moment.  No four year old should ever feel like their parents don't care about them.

One upset wee Charlie - I took this picture through the window inside. 

Charlie and Dad time at the park.
Smiling again!