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! 

100 KISSES AND ONE SORE LEG

Harry's wee legs have had a hammering this week. We gave him half a pill less of immunos last week and poor Harry has suffered for it. At least that's the only thing I can think of that's caused him to be itchy.
He literally attacks himself..mainly his legs and feet and gets stuck in a trance of itch, rubbing back and forth until he bleeds then cries. Harry had kindy on Friday and this has been the first day he's gone there itchy, I felt terrible leaving him.  He had his little fingers In his mouth - this is his nervous sign.  Sure enough I got a phone call a few hours later to say Harry had an itchy attack causing himself to bleed and he was very upset. I was going to pick him up but the teachers asked what they should do next, so I recommended his scratch me not sleeves be put on and read some books with him. They said they would ring me if they couldn't calm him down. I didn't hear from them but it didn't make me feel any better!

As I walked into kindy at home time I felt like I was going to cry seeing Harry, but the first thing he said was "I had fun today Mum" and I instantly felt better. A ten minute moment out of five hours isn't so bad! The teachers tried to put his sleeves on him but he got too upset so they were able to distract him until he settled. When I first walked into kindy a boy said to me "Harry didn't wear those things you wanted him to wear". I knew straight away he meant the sleeves! So Harry survived his first itchy kindy day and so did I! I felt guilty the entire time he was there and just wanted to pick him up and keep him close to me but knowing that he was able to settle with the teachers help has put my mind at ease..slightly!

This week I have been giving Charlie 100 kisses a day. Just something random I came up with to perhaps try and help with the guilt I carry as Charlie has missed out on so much of our attention over the last couple of years.  His wee face lit up the first time I did it and the second day I gave him 60 and owed him 40 which I have him later that day.  The next morning when he woke and snuggled into me in bed he said "Mum can you give me the 40 kisses you owe me". So cute! Charlie also had his first school visit this week and when I asked if he had fun he told me it wasn't fun, it was awesome.  He looked very happy being there too.

Oscar's had another whole week of school. We have been late most days but that's nothing unusual for us. Oscar is like a turtle getting ready in the morning and waking between 8:30-9:00am means we don't get to school until 10:00am! He's had a happy week although his skin has had a very small flare up and it's all my fault. We tried egg yolk on Thursday night and it was obviously a fail! On a positive note the reaction wasn't immediate or full body so we can probably thank the immunos for that. Oscar had been begging me for so long to try egg again and of course I feel guilty for caving into him but it's also reassuring to know the reaction wasn't severe. We have also managed to get Oscar back in his bed again and he lasted until 4:00am the other night.  That's monumental for him!
Today Oscar and Charlie had a kids duathlon. Before the race Charlie was hitting Andrew with a stick so Andrew grabbed it from him, accidentally cutting his finger with the stick. Things went down hill from there and Charlie didn't end up doing the race. While I was giving him a cuddle he asked if I would  give him 100 kisses to make him feel better!  Oscar did so well and didn't stop once on the run. He really enjoyed the race and wants to enter the other races in the series.
Other than Harry being itchy again we have had a pretty good week. Hopefully Harry starts to heal again next week.

One sore leg.....

One sore foot....

One sore little boy...

Oscar racing in his duathlon

Charlie off to a school visit from  kindy

"THE BEST DAY EVER"

Who would have thought our family could enjoy another day out without itching, blood or screaming! We went to Queenstown last Sunday for Oscar's birthday and took the boys up the Skyline Gondola and surprised them by going on the luge. Initially Oscar panicked and got out crying as he wasn't sure what to do. Thankfully he persevered and tried again and figured out how to use the brakes! Oscar had an absolute ball and on the chair lift back up he said to Andrew "This is the best day ever". We all had a great day and it was very heart warming to see such a big smile on Oscar's face.  Unfortunately Harry and Charlie both went down hill as the day went on with temperatures and have been sick all week. No down time again for me this week! Charlie and Harry are coming right as of today except for a nasty cough. One thing I have noticed though is Harry's skin hasn't flared up like it usually does when he's sick. It's often a double whammy for Oscar and Harry when they get sick!

Harry's still scratching his legs and feet but nothing we can't handle!
Oscar's skin is beginning to clear again. I wonder if the skin friend is starting to kick in? Even his bottom which is usually covered in eczema is healing. I wait with bated breath! I'm certainty not naive enough to think this might be the break through we've been hoping for.  If he gets a few days reprieve before getting itchy again then we'll be happy.
I was given a beautiful bunch of flowers a couple of days ago from our lovely neighbour and friend thanking me for checking on their new gorgeous dog while they've been at work this week. It dawned on me this morning while admiring them that we haven't been able to have flowers in our house for so long.  It wasn't worth the risk to Oscar. We used to hang his clothes and sheets up inside so they didn't get pollen on them and windy days used to be an inside day for him,  I'm glad those days are over!

Reflecting on this time last year we were in the midst of caring for two sick children, barely sleeping, trying to still give Charlie some sense of normality, Surviving! We really have come so far. In fact I have cleared out Harry's draws to make way for proper clothes and have thrown out a pile of discoloured,  blood stained all in one suits, singlets, bandages and sleeves full of holes that I'm pretty confident we no longer require!

Reading the last few months' blog posts crack me up....'we're having a good week'; 'oh now we're not'; 'things are good again' ...  and what do you know, now they're not!

This is certainly a journey of ups and downs; What a ride!

Harry - One year ago (Oct 2015)!

Harry's poor wee back this time last year

Blood stained pile of clothes!

MR 7!

Another birthday in the family! Our first wee baby is turning seven on Monday. I always feel emotional on the boys birthdays, reflecting back to the day they were born. I really do feel very blessed to have three gorgeous wee boys. I'm the first to admit they do my head in on a daily basis with their lego mess and continuous humming of the starwars theme song but my gosh I really do love my wee men!

Oscar turning seven marks six years of him putting up with itchy skin. he really doesn't know any different. Although he has come a bloody long way!  We got Oscar's school photos back this week and he looks so healthy in them, I thought last year's one he looked better after a couple of months on immunos but now a year on he looks like a different child. He certainly has a wee spark in his eye again. 

Week three of the term and per usual Oscar's been off most of the week. Temperatures and coughing. I can't wait for his immune system to be up and running properly again.  It will certainly be interesting to see how he goes next winter with his health.  

Harry is pretty much toilet trained during the day finally.  Another awesome milestone. He had kindy again on Friday and has paid for it today in terms of being tired, and when he's tired he's itchy! We ended up going for a drive today so he would sleep. He has patches of eczema still but I would describe them as scabs where he's rubbed more than standard eczema and his poor wee feet still hurt. He's back to wearing gum boots as his shoes hurt him. Another big milestone though -Harry hasn't worn sleeves to bed for two weeks! Over a year of wearing them every single night and now he doesn't need to wear them. 

He's still waking up itchy most nights but easily settles if we tuck him in with one of us and Oscar's back in our bed too with being sick so we are back to our usual bed situation. 

Harry will be picking up another kindy day in a few weeks, this is a day Charlie's not at kindy so it will be great to have a Mum and Charlie day once a week until the end of the year. I plan on showering him with extra love, kisses, cuddles and he can decide what we do for the day. Guilt always comes into play with being a parent. I feel guilty for the boys going through steroid withdrawal and having terrible eczema, I feel guilty that Charlie has missed out on so much attention that he deserves. I know he hasn't missed out on our love by all means but our time and attention he has missed out on. So many times he's said "Can we".. or "look Mum" and I've replied with I can't now or wait or I'm busy...usually with Oscar or Harry. So Mondays are going to be our special wee day.  I can't take back the time I've wanted to spend with him but it might help to ease my guilt and I really am looking forward to spending quality time with Charlie.

I've been out biking a couple of times this week and have finally got my guitar back out after nearly eight years of barely playing it. So nice to have the energy to want to do something for myself. I even got my hair cut and coloured last week and have enrolled in a beginner yoga class starting next week! It's quite exciting to be doing 'normal' things again. The boys health obviously has played a huge role in not being able to do these things and also being a Mum in general means you don't put yourself first anymore. You really are the last one you think about. Our wee people come first to our needs but I challenge any Mumma wrapped up in the busy lives of children to do one thing for yourself this week. A walk, getting your hair cut, buying something for you and not your children, just think of yourself even if it's something small. If there's one thing I've learnt in life, being a parent is dam hard work so we should be rewarded from time to time. So go on- book that hair appointment now!

October 2015

October 2016 - Looking so much healthier 

OUR WEE KINDY BOY

Harry had his first day of Kindergarten last Friday and thankfully survived the day happily and without any itchy attacks. Charlie was with him there too so I think this helped!
To have Harry start Kindy shows how far he's come. He's mostly happy, sleeping better and looks like a healthy happy wee boy compared to this time last year.
After I left Harry at Kindy I cried all the way home. It was a strange feeling leaving my baby behind . The house was so quiet. Having three boys makes for a very noisy and messy house so the silence was almost deafening! I made sure to do something for myself so went for a bike ride before going to Oscar's school athletics.
Harry's Skin is looking great. The only times he seems to be itchy is when he's tired and on and off throughout the night. His feet still look that of an old man rather than a three year old! I found a container of Harry's dead skin the other day in the cupboard - glad I didn't mistake it for breadcrumbs! I'm guessing it's a few weeks worth? I can't believe how much skin he lost through this process. It's so disgusting but it also fascinated me seeing teaspoons a day of skin coming off Harry.
So on the home front - After one year and eight months Andrew and I finally slept in the same bed all night long. Not at all a sound sleep with both of us getting up and down through the night to Oscar and Harry then waking in the early hours to Harry then Charlie tucked In with us! Still, this is one massive milestone for us. It's still weird going to bed at night with Andrew. We are both so used to little people tucked in with us! Harry has had two more nights of sleeping through all night and Oscar has been in our bed on and off over the last couple of weeks and the times he's managed to fall asleep in his bed he's lasted between 1-5 a.m.
Another big milestone - Oscar has had two full weeks at school. this is the first time ever!
It's been confirmed that Oscar does have Horseshoe Kidney. This basically means that his kidneys are a different shape than usual and it's thought that this isn't a contributing factor to Oscar's stomach upsets. He's still getting sore stomachs but not everyday like he was.
Oscar still has a spotty eczema rash all over his body that we can't seem to shift. Very frustrating when we are working so hard on his diet.
We were lucky enough to win 'Skin Friend' supplements in a competition I had entered recently. The supplements contain ingredients that help to assist in the healing and repair of skin.  The supplements are developed by Karen Fischer who wrote 'The Eczema Diet' book. We are two weeks in and no change as yet so fingers crossed we might see change soon alongside the eczema diet.
Life is so much easier than it has been over the last few years. We are getting enough sleep to function normally now. For so long I have felt like we have just been in survival mode and not really living- alive but not living!  Not enjoying life or having fun as a family, just doing all we could to get through a 24 hour period to do it all again the next day. It's been our job to get Oscar and Harry through this and I feel like we have got them over the worst.
I'm looking forward to so many fun family times ahead of us.

Harry's first day of kindy

Enough to be put off breadcrumbs for life! 

MR 3!

Happy Birthday to our wee Harry. My baby is turning into a big boy!
Harry had a great day celebrating with friends and family and it's wonderful to see him so happy.
We have started toilet training this week with Harry and he's doing really well and has already mastered sitting on the big toilet and successfully did no.1's and 2's!
He's had a few more nights this week of waking up at ten so we have a two minute cuddle with him and he's then fallen asleep until six-seven a.m!
Oscar had his ultrasound last Monday and we are still waiting on the full report but it sounds like there is an abnormality with his kidneys. Whether or not this is the reason behind his stomach issues will be something that needs to be further investigated. Hopefully we hear more soon.
Last Sunday Oscar woke up and said he wanted to sleep back in his bed soon. Andrew asked him when and he said tonight! So queen bed out- fire engine back up! It's so lovely to see Oscar's room back into a child's room. We even suprised him with a new Starwars duvet cover that was supposed to be a Birthday Present.  I've had to stay with him until he falls asleep as he's been nervous about sleeping In bed on his own. Understandably after all this time. Night one Oscar came out to the lounge at seven in the morning with one very big smile on his face! The rest of the week he's lasted until various hours of the night before ending up in our bed.  So proud of Oscar for finally feeling ready to be back in his bed. It's very strange for Andrew and I to go to bed together and fall asleep next to each other.
Oscar has a sprinkling of spots all over his body that look like a reaction to something food related. He's had corn wraps this week so I'm assuming he's reacted to them?  I think what people forget with eczema and allergies is once there is a reaction to something the damage is done and it's unfortunately not something that dissappears within a few hours. For Oscar it's usually a week or two for his skin to recover. We have now  fully implemented the eczema diet by Karen Fischer so fingers crossed this will help. We need to have Oscar's Skin clear before coming off the immunos so it's a great driving force to stick at it even though it's very restrictive.
The boys have come such a long way over the last couple of months and more positive firsts this week. We are so proud of our wee men. I've been quite upset the last couple of weeks. I think now finally having time to reflect and realise what our wee men have been through and our family too. I have had to be strong for so long and now I don't need to with the boys getting better. It's really hard to explain as I feel like I should be overjoyed with excitement that things are  going well for us. If anything I'm relieved yet waiting for things to turn to crap again! We've been on this journey Soo long it's all we know. It breaks my heart to think of the pain Oscar and Harry have endured and that they've had so much of their chidhood taken away from them. These are things I need to work through in my head. The guilt also from applying all the steroids! I know I will be ok and work through it all . Andrew's been very supportive and has helped me to get out the door and do some exercise. I definitely feel better for it, just hard to get motivated!
A few days left of the school holidays so hopefully we can do some more fun things with the boys. We've managed skiing this week with Oscar and Charlie, it was a great day watching them learn. Unfortunately Charlie had to be rushed to the doctors in the afternoon with an ear infection! Going up the mountain set it off. He's doing fine now though thankfully. Yesterday we went to the bike bike. It's great being able to go on family adventures together finally. Hopefully we can squeeze in a couple more before holidays are over.

A WEEK OF FIRSTS

In terms of Harry's health, this has been the best week he's had in 11 months! His skin looks great, he's sleeping better and is finally having a bath without screaming! Harry looked slightly confused realising that he wasn't in pain in the bath! When it was time time to get out he said no! He's even had his first disco shower, (We have a shower head that flashes different colours).
Harry has also been very settled in the night too. He's had two nights of sleeping until 5 a.m then snuggled in with Andrew until seven. He woke up the other morning and said to me "I'm not ouchy under my chin now and if I scratch it I will go to jail!". Not quite sure where he got that from. Harry would have been sent to jail long ago if that was the case!
Harry is wearing shoes again! His feet have some pretty good scaring on them but im sure this will fade over time.
He's also telling everyone he has eyebrows now! He keeps putting his hands up to feel his eyebrows and asks "Do I still have eyebrows!".
Oscar's Skin looks unbelievably good too! He has a small amount of eczema on his bottom and not one bit anywhere else. Now that his inner elbows are clear we can see that his arms have lots of scaring too. Lastnight Oscar got out of the shower and with a big smile said "Mum I don't have any eczema on me". Music to my ears! Fingers crossed this continues. We have established a good routine now with the boys supplements and they are both happy to take them - Harry used to vomit them up!
Oscar is still complaining of sore stomachs but no V&D in three weeks. He has an ultrasound next week but I'm pretty confident it will be clear. He's sleeping through most nights too!
We've been given the go ahead to take Oscar off the immunos over Summer. A very exciting yet nerve wrecking time! I look forward to getting his allergies retested at some stage to see what is really going on with his body. It would be great to try and reintroduce some more foods if we could so he has more variety. Imagine being able to go out for a family meal at a cafe or restaurant!
I can't believe how far we have come on  this journey. I feel like the last two weeks have been massive with both Harry and Oscar's bodies healing.  The increase in the immnos for Harry has kicked in and is helping hugely. He's a different child - a happy child.
Is it possible we are actually heading towards the end of this journey after six years with Oscar? It feels like it, I cross my fingers we are nearly at the finish line.

Disco showers are so much fun!

I love this picture! Such a big milestone seeing a smile on Harry's face while having a bath

Harry's legs 

Oscar's arms haven't looked this good in six years!