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!

I CAN SEE CLEARLY NOW....

That we are getting some decent sleep! Both Harry and Oscar are doing well. Oscar has had a few nights of sleeping right through but is mostly waking a couple of times a night and only briefly. Gone are the days of him being awake all night long itching like crazy and me patting like crazy, being too scared to move as the slightest of movement would wake him only to itch for another hour or two! Harry is sleeping longer and unbelievably slept right through until 7.30 a.m the other night- this was a first for him! I'm waking up now not feeling like I'm stuck in a haze and it dawned on me the other day while I was driving to school how clear it was out the window..because my eyes were in focus and I wasn't driving completely exhausted. Looking back on things there were certainly many mornings that I should probably not have been behind the wheel with my precious wee people in the car. However I'm positive those days might be behind us now. I am struggling to fall asleep at night as I'm just not used to the boys sleeping. I'm waiting for the sounds of hacking and crying. This has been our life for six years so I imagine it will take a bit for our bodies to adapt to such a change. Andrew is waking in the early hours of the morning and can't fall back asleep. He's used to only a few hours of broken sleep a night so his body is probably waking after four or five hours of quality sleep ready to start the day!
Oscar and Harry had their blood tests this week. I thought it would be easier to get them done together when I booked them in..anyone with three boys, or three children will understand how hard such a task can be but as we didn't have to wait long the boys were great! Phew. We got through the blood tests relatively unscathed. The nurses were relieved they drew blood first time round- we have had a few incidents of this not happening and Oscar understandably gets upset. Last round they had two attempts on Harry and I think it hurt me more than him having to watch him! Tonight at the dinner table Charlie told me he felt like crying watching Oscar and Harry have their blood tests. I didn't even think for a second how he might feel watching them! I'm so glad he was able to tell me how he was feeling. From here on in I will book the boys blood tests on a day that Charlie is at Kindy!
Harry's wee body has got worse as today has gone on. His entire back is red and splotchy and he's terribly uncomfortable. Last night Andrew heard Harry scratching and went to check on him to realise the noise he actually heard was Harry grinding his teeth in his sleep while rubbing his feet together. Poor wee man. It takes six-eight weeks for the methotrexate to build up and work properly. I can't wait to see my baby itchy free.
Oscar has been slightly itchier the last couple of days and I can't put it down to anything. ..but on a very positive note,  finally after nine weeks there are no more stomach complaints. Thank goodness! Oscar's  doing very well at getting to school too. He's only had one day off over the last two weeks and I'm hoping he will get to the end of this week. Oscar's happy to say goodbye when I drop him off. It makes such a big difference walking away knowing he's not crying. This has to be by far the quickest term we have had with Oscar missing so much school. I really hope next term doesn't bring any nasty winter bugs. One week until we get to have a couple of weeks going on some fun family adventures.

So proud of this strong and brave wee guy. 

Harry got this water trough for Christmas. This is the first time he's been able to play with it!

Recovering from an itchy episode 

A day trip to Queenstown 

A fun outing to the Toy and Transport Museum 

MINI OSCAR

We finally got Harry's allergy test results back this week. The specialist requested the children's food mix and on paper Harry's allergic to milk, fish, soybean, peanuts, wheat and eggs...Harry loves eggs! However allergy testing isn't reliable while going through TSW as your body is hypersensitive to everything . I believe If Harry was tested for environmental allergies these would have come up positive too. It seems Harry really is copying in his big brothers footsteps. Harry's Skin sadly has got worse this week..maybe it's because of the eggs he's had for lunch!! Last week I honestly thought we were over the worst of things. Harry was doing so well although he was still very itchy. This week has been a week of blood on the carpet multiple times a day. Harry's wee body has weeping, blood all over him. He has been distraught crying and saying his skin is ouchy and he wants to take it off... and he smells again! This was enough for me to except the fact that Harry needs to go on Immunosuppressants. I guess I was quite naive to think we were out of the woods. However I know how far Harry has come on this journey and hopefully he won't need to be on the drugs for too long. Enough to settle things down and give him a reprieve So that his wee body can heal enough to get this dam itch gone for good.
Harry had his folic acid a few days ago (this apparently helps to counteract some of the side effects) and lastnight he had his first dose of Methotrexate. Here we go again! At least we know what we are in for this time. Here's hoping this is another step towards this journey being over.

A NEW AND IMPROVED HARRY

The boys and I have been down and out over the long weekend with temperatures and a nasty cold and to top it off Oscar has impetigo on his face. This is something we have not had to deal with before and it's amazing to see it multiply before your very eyes! Thankfully it's clearing up nicely. Oscar was at the doctor for this yesterday and again today for a follow up on where to next for his stomach. His stool sample has come back showing a high level of inflammation. This really doesn't tell us much more so isn't a great help! If anything  it proves there is something wrong with him. The paediatrician suggested the next step is worming him and another dose of antibiotics for two weeks. Thankfully the doctor agreed with me and believes that antibiotics are not the solution. So monitoring at this stage and coeliac test in a few weeks with Oscar's next bloods. This was supposed to have been done already but for whatever reason was missed at the lab. For an accurate test there needs to be a little bit of gluten in your system for a few weeks so at least this way we will know for sure. Oscar's happy enough but still complaining of a sore stomach 3-4 times a day and comparing him to what he was like when on the last round of antibiotics there is a vast difference. This was the only time we saw Oscar up early to start the day!

On a great note, Harry is looking amazing! His antibiotics finished nine days ago and he still looks good. He seems to have 'normal eczema' so will see what the next few weeks bring. His skin also feels so soft. I can't help but touch his legs. Tonight before bed Harry pulled up his sleeves and proudly showed Charlie his arm and said "Feel my arm Charlie!". The last two nights we haven't wrapped Harry's hands and I'm very excited to say Harry has had two nights in a row of sleep. One night alone of sleep previously would have equated to three nights sleep!  The first thing Harry said when he woke up this morning was that he had a good sleep in his bed. Fingers crossed this continues. I believe this a massive factor in Harry's Skin looking well, he's able to heal with the amount of sleep he's finally getting. Harry is also eating now with no sleeves. It's so strange seeing him without sleeves on. The biggest thing we are still getting used to is seeing Harry wear proper clothes. ..not all in one suits backwards! The hair that has been rubbed off behind Harry's ears and also his eyebrows is beginning to grow back too. Gosh, so many positives in such a short time frame. Harry really is a different child and I'm hoping I can safely say we are over the worst of topical steroid withdrawal. This means that Harry won't need to go on immunos either.  He's still dam itchy and has moments of needing redirected but he's no longer sitting on the floor screaming and crying all day trying to attack his skin. This means we can finally start toilet training, Harry will be able to start Kindergarten at some stage in the near future and it's one huge step to normality for us. Most importantly Harry is able to play and learn and enjoy a life of being comfortable again. The biggest damage is to his feet still but in time they will heal, as will Andrew and I. This has been one hell of a journey and our children have had to come first. Their health and their healing has been paramount. Andrew and I...and our marriage will be the next step in healing. Again this will take time but we will get to where we need to be.

MORE IMMUNOS- MORE POO!!

A crazy week for us of ups and downs. Firstly, Harry... Harry had a specialist appointment on Tuesday in Dunedin and we have made the decision to put him on immuno suppressants also. We have come to the point in this journey where we feel like we are no longer coping as a family. Actually we have felt like this for some time but we wanted so much to get Harry through this without drugs but I just can't watch Harry in pain any longer. He screams every day at us saying "Take my skin off" and "My skin hurts". I feel like we are torturing him! Enough is enough. We have hung on for eight long months and we have seen healing, very slow healing but not enough to continue this way.
Last weekend I turned our bedroom upside down trying to find steroid cream in desperation to ease Harry's pain.  I did find some and used it. I honestly thought I would never touch topical steriods ever again. I guess this proves how desperate we are! Unbelievably Harry slept all night, the first time in eight months...actually the first time ever! To me this proves how addicted his wee body is to topical steroids. He had the fix his wee body was craving. He is on antibiotics now before going on the immnos in a couple of weeks. After a day of being on them we have seen a huge improvement -  Harry is a changed wee boy..momentarily at least. He's sleeping, playing, laughing, he didn't wear socks the other day all afternoon and tonight he didn't have his sleeves on for a little while and there was no scratching! He has had a couple of itch sessions throughout the day that are short lived. Harry pulled up his sleeve tonight and said "My arms white". He's also said "I feel good now".
I do feel defeated and have moments of doubt in what we are doing, swapping one drug for another but I need to think of all of us in this decision. Ultimately I want my baby to be comfortable and happy again.

Oscar had his last lot of antibiotics last Sunday and on Wednesday he woke up with diarrhoea and vomiting again.  Thursday was much the same. The doctors are running more blood tests and stool samples. Far out, the amount of poo we have been dealing with the last few weeks! There's a couple of things the doctor and paediatrician from Dunedin are looking into so hopefully we will know more next week. Oscar is happy enough at this stage thankfully and his bowel motions seemed fine today but he has a sore stomach again tonight.  It will be interesting to see how he feels over the next couple of days. Fingers crossed his body is just trying to get back to normal after being on antibiotics.
A tiring week emotionally but thankfully with Harry sleeping better this week I feel like I have been able to cope with it all without feeling too frazzled!

Clear skin after a day of antibiotics 

A HUNGRY BOY

We are home again and Oscar's appetite has well and truly returned! It is so lovely to see him eating again, smiling and playing.
The doctor's seem to think Oscar had a bug of some kind attached to the lining of his bowel and as he's on the immune suppressants his wee body struggled to fight it. He's on anti biotics for 10 days and off the immunos for two weeks so hopefully this should do the trick. We came home to lots of beautiful cards from Oscar's class mates wishing him well. He was so chuffed reading them. Tonight Oscar said his tummy rumbled and told him he's not going to be sick tonight so the towels and sick bowls have now been put away finally.
Unbelievably Oscar's Skin looks amazing! He's barely eaten for the last couple of weeks so I'm presuming that's why.
Considering how sick he's been, Oscar looks remarkably healthy! Fingers crossed this continues.

Harry has a cold at the moment and looks terrible. His face is all red and splotchy and the rest of  his skin is a bit worse for wear. He's quite miserable so hopefully he be feeling much better in a couple of days. Oscar and Harry's health never seems to quite line up being healthy at the same time... surely one day they will.

A big thank you to our family and friends for their care and support this week. Thank you also to Oscar's classmates for their beautiful cards.  They put a big smile on his face.
Here's to a better week to come!

HOSPITAL!

I'm happy to report Oscar's Skin looks amazing!... For the fact he's barely eating. Today is day 15 of him not being well. Intermittent vomiting and diarrhea every second day. Food poisoning has been ruled out and we are waiting on the giardia test still and bloods were done today. Poor wee Oscar, gosh he puts up with a lot! He hasn't been back at school this term and I can't see him going back this week. I'm going to have a very big job on my hands trying to settle him back in to class. At one stage I had thought perhaps he's making himself sick so he doesn't have to go to school! I'm pretty sure that's not the case though. We just want to see him well again. The sooner he is off the immuno suppressants the better.

 Harry's got a slight cold at the moment and his skin has flared up.  He managed to scratch his arms to bits within seconds while in the bath yesterday and last week got to his legs while he was supposed to be snoozing! I walked into a terrible sight of blood all over the carpet, he managed to take all of his clothes and scratch sleeves off and his legs were raw and bleeding. I wanted to scream at him! He needed to have a bath so that I could wash the blood off and the poor wee man was in so much discomfort. Possibly one of the quickest baths he's had. Harry's still playing and is generally happy so at this stage I'm feeling ok with where we are at in terms of healing. Obviously I would like to be closer to the end of this journey than we are but I know how far Harry's come. It's just so frustrating seeing him damage his skin as it puts him a step back in healing. Taking the good with the bad..that sums up life really!

Update: The above was to be my next  post and I was going to add photos today but we are in hospital with Oscar in isolation as he's still sick. They are not sure what's wrong at this stage. Some of his blood test results were out of range so he's being monitored. Nine thirty in the evening we are waiting for stomach x-rays and we're cuddled up watching Grease on TV.  I feel relieved to be here as he's been sick for far too long! Will update when we know more.

A SENSE Of NORMALITY

It's the end of school holidays for us. It has been lovely not waiting on Oscar to wake up to then have to rush around getting organised to get out the door..even though we are usually an hour or so late! Oscar's wee body is lapping up the sleep ins and I can honestly say his sleeps over the last couple of weeks have been the best he's ever had! His body still has eczema on the previous areas and we are having trouble shifting this but he is mostly comfortable and happy. It will be interesting to see how he gets on back at school with the temptation of other children's food. I found pretzels in the bottom of Oscar's school bag when I was cleaning it out last week. He admitted that he found them on the field and he had eaten some of them.  We will give it a few weeks into the term and see what's happening before deciding if we need some outside help with this situation or not. Oscar is recovering from his second tummy bug within a few weeks. Hopefully no more for him! I am dreading winter bugs especially with Oscar on immune suppressants.  We have reduced Oscar's dose this week. This is our second attempt so fingers crossed he doesn't get too itchy. If he doesn't this is a huge step to becoming drug free. Fingers crossed!

Harry is doing well. His feet are slightly better but he can easily change that within seconds! We noticed some new stains on our carpet a few days ago and couldn't figure out what they were from as I was certain they hadn't been there the day before. On closer inspection it's blood! Harrys obviously rubbed his legs on the carpet and bled slightly. This probably happened while changing his nappy. It's not bright red so I'm assuming it's mostly ooze..Yuk.
Harry slept for five hours in a row last night. I think this is a world record for him.  He's still restless and itchy throughout the night but comparing a few months ago to now his sleep is certainly better.
Harry's new scratch me not sleeves only lasted a few weeks and now have holes in them. I guess they are not designed to withstand the constant rubbing and scratching from TSW.

The last two weeks have been our first school holidays being able to get out of the house spending time together as a family having fun and going on adventures. We even managed two trips to Queenstown without no itchy attacks. The boys also went on a big walk up to Rob Roy Glacier..two hours up and an hour and a half back down! Andrew had Harry in the backpack and Charlie on his shoulders some of the way and Oscar walked the whole way. We had a great time and unbelievably there were no meltdowns. I'm so excited for our future holidays with healthier children. I can't put into words how lovely it has been being able to manage time outside the house without itching, blood, screaming and discomfort for Oscar and Harry.
Both of them have come such a long way!

SLIGHTLY MORE SLEEP

The last week has been the best week we have had in terms of sleep in years! We tried the sedating antihistamines again and they seemed to have worked. Previously for both boys there had been no relief with the use of it. Another sure sign they are healing. Harry usually wakes every couple of hours then is particularly unsettled from around 10pm until 4 or 5am but he's has had a few nights of sleeping from 7 until midnight. This is huge for him. Andrew and I need to learn to go to bed at 7! Oscar has had another week of reasonable sleeps and massive sleep ins. Anywhere from 9 until lunch time! His body clearly needs it...although he does have a few years to make up! The downside is getting late to school as Oscar is unsettled and upset walking into class late. I found another bar in his bag yesterday. It hadn't been open but it makes me wonder what is being eaten at school that we are unaware of. I'm looking forward to school holidays next week as I know we will be completely in control of Oscar's food.
Oscar finished his first term of keyboard lessons this week. They had a little concert for parents showcasing what the children have learnt. I was so proud watching him.  He has learnt so much already and hopefully he will continue with this interest as sports are too hard at the moment. Oscar wouldn'tbe able to consistently turn up to practices and games and would end up sweating then he would suffer with itch! I'm hopeful next year he will be able to join a sports team.

We only realised a few weeks
ago that Harry has lost most of his eyebrows! He has very fear eyebrows anyways but it wasn't until we were looking through photos that I realised! He has also lost a lot of hair, in particular behind his ears where he rubs lots. I know it will grow back but have a feeling it will get worse before it gets better as he rubs so much on his head. He has had short day sleeps lately and I only figured out yesterday that he's not sleeping. He fell asleep in the car yesterday so I knew he hadn't slept in bed yet he was in there for 45 minutes. I checked him after ten minutes today and sure enough he was on the floor in his room scratching. He had managed to take most of his clothes off even with his sleeves on. Harry's overall appearance is amazing. The problem areas are his wee feet and wrists as these are easy places to access and rub, even with his sleeves on he can do so much damage.  It seems the oozing stage is over unless he rubs himself raw.  The flaking of skin is slowed down significantly too. I honestly feel we are over the worst of tsw with Harry. He's happy, energetic, independent and can be distracted from the itch from time to time. I wonder how long the itch will stay for?

School holidays next week so hopefully we can have some fun family days out and about exploring paradise around us.

LOOK HOW FAR WE'VE COME

It has been a crazy week with illness in our house so I'm sorry for  not updating earlier. We've had colds, chest infections and tummy bugs. Hoping that's our lot for awhile!
Harry has been doing well with his skin looking quite good. The biggest challenge is not letting him get to his skin so he can't tear it apart. He has some new Scratchme not sleeves (thanks Mum! ) and is finding it strange that he has hands free to feed himself.  He keeps asking me to help him so I have to remind him he can do it. Turn our back for a second though and he's straight into scratching so we have to watch him like a hawk. We are continuing to see more pink/white skin. Harry's still shedding skin but no where near the amount he was.

Oscar has missed a few days off school with a tummy bug prior to Easter then after Easter he was sleeping in until between 10.30-11.00! His body is trying to fight getting a cold I think as he looks run down.
On Friday afternoon a muesli bar wrapper fell out of his school bag onto the floor. I queried him on it and he burst out crying telling me that someone must have put it in his bag and he didn't want to talk about it. I left it for awhile and brought it up again later that evening. According to Oscar he found it in the playground and then ate it. He said it was ages ago but based on the night we had and the red spots all over his stomach the next morning I'm pretty confident it happened on Friday. The bar was full of dairy, soy and eggs.
A few weeks ago when I picked him up from school he was eating a bag of potato chips he claimed to have found so we have not long ago already discussed only eating food from his lunchbox. Then yesterday I went into our wardrobe and found another bar on the floor, different than the previous one with only a small bite out of it (clearly he didn't like it!). I asked Oscar again if he found it at school and he said yes and began to cry, begging me to not tell him off. If only he knew how sad I was feeling for him. Again he claims he found it in the playground.... how many more do we not know about?. I feel like my life revolves around preparing food for Oscar that he's not allergic to. It's dam hard work to provide variety when the choice of foods is limited. Oscar has also mentioned someone has told him his lunchbox is yucky. He is very unsettled at school drop off crying and tries to run back to the car! I'm wondering if this all related. Not sure how we are going to tackle this but thankful we now know whats happening. Today we are going to attempt to make our own muesli bar but will it be enough for Oscar to not give in to temptation at school?
Andrew has helped to make the following video clips of the boys. Heartbreaking for us to see all the photos put together. Harry's is harder to stomach however Oscar has been on this journey since the age of one! Putting Oscar on the immune suppressants was definitely the right decision for us to make. It scares me to think how sick he would have been otherwise. The immune suppressants have helped to give him his childhood back. We still feel Harry is far too young to be on them and he's made so much progress in the last six months. He's happy itchy now compared to miserable itchy!
I'm confident we are over the worst of this journey, I at least hope we are!

Oscar's Skin Condition  Clip 2010-2016

Harry's Skin Condition Video Clip Oct 2015 - April 2016