Monday, November 28, 2016

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!

Sunday, November 20, 2016

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 


Tuesday, November 15, 2016

"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! 

Saturday, November 12, 2016

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

Saturday, November 5, 2016

"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!