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!

WALKING ON EGG SHELLS

Oscar is so much better thankfully. What a brutal few days for him. He's had it all over the last week, power chucking, going at both ends and not being able to keep it in while trying to get to the toilet! Fair to say lots of washing and cleaning too!
Oscar finally had some massive sleeps over the weekend and his skin is healing again. I've noticed that his skin gets worse a week before the v&d then starts to heal only for it to happen again.  Will be interesting to see if we can see a clearer pattern of this if it continues. We saw the paediatrician last Thursday and It was pretty much what I expected so I wasn't disappointed. He believes Oscar initially had a gastro bug and now because of that his stomach is extra sensitive and something is irritating it. No kidding! Possible causes are food, Oscar's immunos or something else. So clearly he has no idea at all. He's not worried about Oscar's lack of weight gain, and thinks we should take Oscar off the immunos incase it's causing the stomach problems. I'm not sure how he can make this statement without actually talking to our specialist first. So basically he thinks Oscar will just get better by himself and crosses his fingers as he tells me this. We are getting an ultrasound done too at some stage then a follow up appointment. We also left with a prescription for a stomach anti-inflammatory so when I can predict Oscar's going to get sick I can give it to him to help reduce the severity of the V&D. These have to be taken prior to it starting so they're a fat waste of no good. Thankfully we have a repeat prescription!
So now we watch and wait. It's a horrible feeling waiting for your child to be sick!
So all of this was relayed back to Lisa and she has another opinion. She believes Oscar may have a worm or parasite infestation or an imbalance in his gut due to too many antibiotics. All of that completely makes sense to me. Oscar is still eating when he's sick. He can't eat enough! I never thought he had a stomach bug right from the start for this reason and also the pattern of vomiting every second night. So we will now start the first step of treating this with Lisa and see if this helps! I need to do more reading on it all myself before I can completely explain it all.
Harry Is still itching his wee feet and under his chin and neck. He keeps opening the patch under his chin so it's an open wound. He then wants us to pat it, Yuck! He seems to be itchy until 9.30 in the morning then lunch time when he's tired and again at bed time. Then the night shift of itch begins.
If he didn't itch he would heal but the itch is too overbearing for him.
Today when I dropped Charlie at Kindy we were doing a puzzle together. I could see Harry through the window sitting on a digger in the sandpit. A wee girl from kindy kept bending down and was looking under his chin. I was wondering what in earth she was doing until I saw her pull Harry's sleeves up to look at his arms then back to his chin and neck then she tried to look at his back but Harry had a bodysuit on so she didn't get quite that far. Then she pulled her sleeves up and her top to investigate her stomach. I'm hoping she was feeling reassured to see her skin didn't look like Harry's!
Well Andrew survived camp last week and we got through a rough week here. Thank you so much to my Mum for coming to stay for the week to help us. Thanks for your company, yummy meals, cleaning out Oscar's sick bowl in the middle of the night, and for your love xx

QUICK UPDATE

This is going to be short and sweet until I can add more. Another rough week with Oscar. Itchy, no sleeping and back to Vomiting and diarrhea! We have a paeds appointment tomorrow so I'm hoping he will refer us to the gastro paeds. Poor wee Oscar. He's put up with so much over the last few months.
Harry's Skin is still healing but he's adamant on ripping under his chin and his feet to bits still.
Charlie's healthy and happy. Well as happy as he can be fighting for our time and attention .
Andrew's on school camp this week and thankfully my Mum has come to help. Thank goodness! There is absolutely no way I could have survived the week. It is so lovely having adult company during the day.
Well Oscar's finally asleep so I need to sleep too. Will update after our appointment tomorrow.

NOT MUCH SLEEP THIS WEEK

I don't know what to write today. I feel like it's all just the same shit different day! I know we've had some good days and nights lately compared with how things have been and these moments give me the strength to keep going but honestly how much more of this itch do my wee men have to endure? One step forward and three back.  I want to fix our boys and we are trying...we've been trying for six years! Both Oscar and Harry have been terribly unsettled at night this week so seeing Oscar get over the finish line at his school cross country was a proud Mum moment, he came a very happy last!
The inflammation on Harry's skin is nearly gone with the increase of Methotrexate, however Harry's still very itchy and uncomfortable. I'm hoping this will subside over the next few weeks. He's still having brief moments of play but spending a good part of the day sitting on the floor wanting to itch or on the couch wanting pats.

I'm getting my head around refining the boys diet even more and following the Eczema Diet books recipes. This will be my third time reading the book! We are mostly there with all the suggestions in the book but it's really about being committed and organised with meal planning.  Stage one requires not eating apples, Oscar's favourite fruit. I've told Oscar that I will follow the diet too so that he's not alone. Harry will be served the same foods too however he's only two..nearly three and has a mind of his own!
I  woke up to a beautiful conversation at 6.30 a.m between Charlie and Harry yesterday..
Harry: "My feet aren't ouchy anymore and my arms have none blood now
Charlie: Does your skin feel better now Harry?
Harry: Yes
Charlie: If you don't scratch your skin then you won't get eczema like my skin"
I heard Charlie remind Harry later In the day not to scratch so he will have skin like him. What a lovely big brother :)

Cross Country Day..so proud of this wee guy 

THREE HAPPY BOYS

Good news and good news! The specialist gave us the go ahead to increase Harry's methotrexate dose and within a week it has done wonders. This time last week he was so uncomfortable, weeping and raw and this week his skin looks amazing. The problem areas have more healing to do but overall we're excited to see him looking so well and watching him happily play. Hes still having intense itchy moments but he's doing very well.
 I'm looking forward to seeing what the next few weeks brings for him.

Oscar came off his antibiotics last Friday and hasn't been sick or had diarrhea. He's been constipated and had Wednesday off school but other than that he's sleeping unbelievably well, waking in the mornings between  7.30-8.30 and has energy. After three months of being sick he seems to be completely well. As our doctor said sometimes they don't have the answers to everything and can't always explain why. So no need to be refered to the gastroenterologist paediatrician but we are being refered to a paediatrician. Oscar's Skin has started to get slightly itchier by the day after coming off the antibiotics. This isn't unusual for him so hopefully his skin settles soon.
I have started running this week and have managed getting out three times. I haven't done anything for myself in such a long time. I've had no energy or desire to. The emotional toll having two children with high needs is mentally exhausting but I now feel I'm at a point where I have to do something for myself. I have to clear my head every few days!
Andrew did the Peak to Peak multi sport race in Queenstown on Saturday and we went over to watch him finish. I don't know how he does it! It's very cool for the boys to see Andrew giving it his all and not giving up.  The boys are very lucky to have such an amazing role model.
Fingers crossed we have another good week.

Harry's feet last week 

Harry's feet this week 

ONE MAN STANDING

What a horrible week we have had. The boys and I have been sick with a nasty flu virus. I've been unwell for five days and the boys are beginning to feel better finally after seven days. Andrew took a day and a half off to look after us throughout the week. I obviously couldn't sleep during the  day as I had the boys to care for so this weekend I've been sleeping off the last of it. In fact I slept five hours today!
As I said in my previous post, Harry's skin has taken a hit this week. He's rubbed parts of his feet and legs raw and under his chin is weeping. The itch is still so dam frustrating for him and he's back to saying "I wan't to take my skin off." Hopefully in a few days it will settle again and his body can continue on with healing. Charlie's feeling much better and starting to eat again - unbelievably last week's groceries have been barely touched!
Oscar hasn't had the same symptoms as Charlie and Harry this week. He's been unwell with sore stomachs, temperatures and has been totally wiped out. This sounds terrible but I have absolutely no idea if he's had a bug or if it's all related to his stomach issues. One more week of antibiotics then we'll know more once he's off them. Today there was no mention of a sore stomach so fingers crossed we have a happy morning getting to school. Last Monday poor Oscar complained all morning that he wasn't feeling well but I sent him to school as I hear this every morning. Turned out he really was feeling miserable and didn't tell his teacher.  She noticed at the end of the day so Oscar spent the whole day feeling unwell at school. I felt so bad when he got home! Very similar to the boy who cried wolf. I'm not saying Oscar's lying every morning about feeling unwell with his stomach but it certainly makes it hard to figure out if he really is sick or not.

I must finish with a big thank you to some very special people who helped us to get through the week. Michelle, Nic and Kristen - Thank you so much for the yummy soup, meals and treats. I feel very blessed to have you as friends and to a wonderful charity here in Wanaka called 'Food for Love'.  Thank you for providing a beautiful meal for us. I look forward to giving back at some stage in the future. Thank you to my lovely Mum for ordering some meals to be delivered to us. So kind and thoughtful!  Lastly thank you Andrew for looking after us even when yon had such a crazy busy week with school reports due! Let's hope your not the next to go down!

GOOD RESULTS AND VIRUSES

Good news on the Oscar front. His latest stool samples were negative to inflammation. This is a huge relief. We now have to see what happens when he comes off the antibiotics as to whether we get refered to the standard paeds or gastroenterologist. Oscar has only complained of a couple of brief sore stomachs this week, so a good week for him!
 We have decided to now cut chicken out of Oscar's diet. He has often complained of itchy lips and a sore throat after eating chicken drumsticks or roast chicken. Breast seemed fine up until this week so time to listen to his symptoms. Chicken could very well be adding to his itchy skin.
We had another dermatologist appointment for the boys this week. Nothing new to report there. Just the standard brief of being told steroid creams need to be applied to the boys. We were initially told Oscar would be on the immunos for one year but it sounds more like 18-24 months now. We also spent a few days in Dunedin catching up with family and friends. We stayed at my Mums and the boys were pretty good sleep wise. This was our first trip away with the boys and a pretty successful one. I even had three nights off cooking...thanks Mum!
The school holidays have ended with Charlie having high temperatures over the last few days and now it's Harry's turn. He's just crashed out on the couch. Harry's feet and arms where he's still healing have completely flared up. His arms look like he has burns on them. I guess because he has such a high temperature. Poor wee guy.
I'm assuming Oscar will be next!
Back to school tomorrow. Fingers crossed for a much healthier term than last.

DESTRESSING...AND MORE ILLNESS

We have had another round of sickness with Oscar this week. Sore tummys still and diarrhea with one bout of vomiting. Yet another trip to the doctors. Feels like our second home these days! They are working with the paediatrician that we saw in  hospital to hopefully work out what's going on. More poo samples and antibiotics to completely rule out infection. The paediatrician doesn't think there is an infection though and is predicting Oscar will be sick again after coming off the antibiotics like last time. I don't see the point but can appreciate they need to fair test to see if we have the same outcome as last time. If this is the case and Oscar's poo sample shows inflammation like the last one then he will need to have a colonoscopy for further investigation. They are also concerned as Oscar hasn't gained any weight over the last year. A worrying time however I'm glad we are being taken seriously. Fingers crossed we will know more soon. Oscar hasn't complained of a sore tummy for the last few days and is happy enough although still very itchy.

Harry is looking better by the week and his feet are looking so good. He's still ripping his arms but the overall damage each time is less. He's had his fifth dose of Methotrexate now and I'm suprised how quickly he's healing. Harry did have a big flare up at the start of the week so his skin is still recovering from that but he's managed two nights of sleeping right through. Both these nights I was on Harry duty! Usually Andrew seems to luck the good nights. It feels very strange waking up with no wee child cuddled into you...or taking up most of the bed!
Andrew and I left the boys for the first time ever over the weekend  with someone other than family. A lovely high school girl from Andrew's work.  The boys can't wait for her to come back! A few hours off destressing was just lovely and it was great to spend time with Andrew. We would never have contemplated leaving Harry a few weeks ago as he was too itchy! I'm looking forward to having more down time soon hopefully!

DID I JINX US?

A couple of posts back I wrote that our days of Oscar being awake all night long are hopefully behind us. Well we have had many nights of Oscar being awake all night long this week! I can't completely pin point what's caused him to be so itchy but I'm  wondering if mandarins might be the cause? Oscar's been waking up this week between 9.30-10.30 so school drop offs have been late, however he's managed to attend every day this week which is a huge milestone in itself. Last night Oscar woke after an hour and a half and took a long time to settle.  He was tossing and turning, punching the bed with his wee fists while having fits of screaming with frustration.  All I could do was to try and reassure him.. .and pat him of course. I wish I could take away all of his itches. He finally fell asleep after a couple of hours. I know from many restless nights to not move an inch after Oscar falls asleep as the slightest of movements stir him and we are then in for another round of itching until he crashes with exhaustion. School holidays now for the next two weeks so hopefully we can get Oscar feeling better before school starts back. On a positive note, Oscar's test results came back and he doesn't have coeliac disease!
Harry's Skin is still healing well although he's ripped his arms to bits...again! He's told lots of people this week that his feet are feeling better now. They are looking better but he's still so itchy. It will be interesting to see how much healing he does In the next month as the medication build up. The overall red burn has gone and Harry's face now looks like a wee ghost -like we used to call Oscar after he started the methotrexate.
 The medication is knocking him about a bit in terms of tiredness. He's ready for a snooze by eleven and sleeps between two to three hours. Unfortunately this is a knock on effect come bed time and Harry's not quite ready to sleep at the usual time! He didn't have a day sleep yesterday and crashed on the couch at 5p.m and was then awake until we went to bed!
As his body adjusts he won't feel so tired.
Thankfully taking the medication hasn't been an issue as the pills are so small they can be easily squashed into a piece of food and Harry is none the wiser.

Looking forward to hopefully having a sleep in tomorrow morning and going on some fun adventures with our wee men.

THE BLOODY ITCH

Harry's Skin is looking so much better and the itch is definitely dissipating but Harry's wee feet are still bothering him. No wonder I'm cleaning blood daily from our carpet with the rubbing he does on the floor. This wee video speaks for itself!