MR SIX!!

HAPPY 6TH BIRTHDAY OSCAR!

We are so proud of you and we love you more than you will ever know.
Today marks Day 72 of being steroid free. It has been a rough five years for you, this year in particular but you just carry on and continue to amaze us with your bravery and all that you do.
It has been wonderful watching you running around playing with your friends with a big smile on your face today.
Keep being strong, keep being courageous...keep being you!

Love Mum and Dad xxxxxx

Our six year old!

Legs - Looking amazing!

Arms

ANOTHER WEEK DOWN

It has been incredible to see the change in Oscar over the last week. Obviously his skin has has healed immensely but in terms of his energy levels and the way he is feeling within himself we have really seen some positive signs. The first being he has started talking back and being cheeky! He has the energy for this and it is so great to see him behaving this way.. I will probably disagree with this as the novelty wears off! He comes home from school wanting to play. Beforehand it was clothes off, sitting on the couch wrapped in towels watching t.v.  His body is adapting to the drugs thankfully. It has been so upsetting to see him with no energy. I was very worried that he would be like this the entire time on methotrexate. Sunday is usually his down day where he's completely wiped out however last Sunday was a normal happy day for him so fingers crossed this continues. We have tried the sedating antihistamine that the specialist gave us but it doesn't seem to do much. I didn't expect it to. Oscar has had a flare up this week and I think too much soy could be the reason. This is the worst his skin has been in two months. Compared to what it previously would have looked like, we really cant be complaining!
Two nights ago the Sloan's got barely any sleep.. Even Charlie woke four times! Yesterday was a blur. I don't know how we get through those days! I gave Oscar one of the sedatives last night as he hasn't had any in over a week and he slept four hours in a row. Then woke every two hours after that but only briefly. This is a good night for him and thankfully Harry slept well too cuddled into Andrew all night. I think we all feel a bit more human today than yesterday!
Harry is doing well. Nights are the worst time when he itches on and off all night. He has good days then days where he seems to be terribly itchy. I'm not sure why, maybe depending on where his skin cycle is at? He's shedding something shocking at the moment and every time you change his clothes dead skin drops everywhere. After the bath there is a layer of dead skin sitting on the water.. Gross! This is a good sign as it means his body is working to get rid of the damaged skin. No matter how many times I moisturise him it doesn't seem to help. This week we have had to bandage Harry's wee hands in the night to stop him from hacking his skin. He thought this was great for a few nights but
the novelty quickly wore off. I have also bandaged his wrists too as he keeps drawing blood with itching so this has helped to protect his skin. As hard as it is to see him this way I know we are doing the right thing. He's more happy than not thankfully so I know that he is going to get through this,
sooner rather than later I hope!

Harry with his 'Boxing Gloves'

Wrapped in towels having cuddles with Mum

All bandaged up

Harry's dead skin all over the kitchen floor!

INTRODUCING CHARLIE

Everyone else in the Sloan family has been introduced and now it's Charlie's turn. Don't worry-Charlie doesn't have eczema, however Charlie feels the impact of having two itchy brothers with eczema. Our wee Charlie bear is a quiet natured, caring wee guy- don't get me wrong,  he can be a wee roughian too but generally he is a sensitive wee soul. Charlie can often be found walking to his room at night for bed with a handful of treasures he has collected on the way to take to sleep with him. Some of these have included Lego, wooden spoons, a hammer and anything he can swipe on his way!
Charlie once said he wished he had eczema like Oscar. I explained to him that Oscar gets very itchy and that eczema hurts him. The very next day Charlie woke up with a tiny patch of eczema behind his knee..his wish had come true! He was so excited so we had to get all the special creams out and make a big deal of his patch of eczema so he felt included. He helped to put the cream on and I think he felt very special as he wasn't missing out!
Sadly Charlie has learnt that when I'm stuck on the couch with Oscar or Harry, he takes himself away to do his own wee thing. Usually this is playing with duplo or Lego. He will entertain himself for long periods of time. He doesn't pine for my attention or try to do something to create attention, he just sits quietly playing. Of course I talk with him but some days I certainly haven't been able to sit and play with him and this makes me feel terribly guilty. The thing about being a Mum is the mother guilt is always there! Charlie is now at Kindy for three days a week and he loves it. It is great knowing he is there interacting with children, learning and being stimulated- something I haven't been able to provide for him over the last while. As Oscar's skin has been healing Charlie has observed and noticed that things have got better for his big brother. A few weeks ago he exclaimed "Oscar you have skin now". I guess Charlie only knows Oscar as having red skin! He has also
commented quite a few times lately "Oscar your skin looks so good". I'm not sure if he is overhearing
 us then repeating what we have said, quite possibly but still it is lovely to hear. The saddest thing we have heard Charlie say is "I'm the only well child in this house". Gosh what a strong statement from a wee three year old. Both Andrew and I make a special effort in the weekends to do something with Charlie out of the house, one on one time with him.
 With Oscar having more energy now this means Charlie and him have been having some lovely
moments playing together outside running around, this has been wonderful for not only them but for Andrew and I to see. I'm sure they are going to have a lovely Summer together getting up to
mischief!
Hopefully Charlie will get to read this one day and know that we always tried the best we could to
share our time and love between all three boys. It's certainly not easy finding the balance when two
out of three children demand and need your attention to help them feel comfortable. However we love all three of our boys so very much.. To the moon and back xxx

Our wee Charlie Bear

Collecting treasures

Charlie asleep with his soft toy cat 'Pirate'

ONE DAY AT A TIME

Well poor wee Harry is in the midst of what we believe is topical steroid withdrawal. He is red and rashy everywhere and he's not the happy active wee guy wee know. He fell asleep cuddled up to me on the couch yesterday morning and every time he stirred he cried. Thankfully he loves the bath so he's happy to spend time soaking in it however when it comes time to applying his creams he screams and cries "Don't you dare Mum!". I feel terrible putting them on but I know it has to be done..many times a day! He is easily distracted which is great and before long he is off playing before another round of itchiness.

Seeing Harry the way he is gives me the strength to see this horrible journey through. Topical steroids were masking his eczema originally. Now they have become the problem!! They have poisoned both Harry and Oscar's bodies-sadly we didn't realise until this year. I'm optimistic Harry will bounce back quickly. I know if we continue with topical steroids Harry could potentially get as sick as Oscar. When this is over our children will have a childhood that isn't dictated by eczema and allergies. These will not define our children any longer!

So we will continue to battle this out, one day at a time.

Oscar is looking great, we have had quite a few people comment over the last couple of weeks how good he looks, however we are no further ahead with his sleep-lack of that is! Andrew and I were both a bit naive in thinking once Oscar's skin cleared he would start sleeping again. Oscar hasn't had a sleep routine since he was one! He itches in his sleep which wakes him or he wakes up then itches. The other night he woke 12 times. The doctors now believe he needs help to sleep and through a psychologist, we are being prescribed sedatives. These come with their own issues in terms of addiction so we will have to be very careful. Oscar has also had a nasty cough for the last few weeks he hasn't been able to fight. He is on antibiotics to help his body recover-Quite a concoction of drugs!

Oscar often complains of his whole body being tired which I'm assuming is from the methotrexate? We have another specialist appointment next so we will talk about this with him.

It certainly has been a challenging year for Oscar but I finally believe we are on the right path to getting him steroid and drug free.

A very long night for us last night playing musical beds! I started off sleeping with Oscar then swapped with Andrew as Harry was very unsettled, he was too itchy to sleep so by 1a.m we were up watching t.v snuggled up on the couch until he finally fell asleep. I was very close to putting him in the bath in the hope of the water soothing him. We got back to bed around 2a.m then Oscar woke yelling and tantruming because he wanted me to be sleeping with him..so Andrew and I swapped again! 

It was a day of survival for both Andrew and I but yet again we somehow manage to get through the days unscathed. I put this down to many years of experience!

My eyes are starting to blur so I will quickly finish with a few common phrases from our wee Harry.

"Oscar's itchy"

"Pap(pat) me Mum"

"Don't you dare"

"Don't do that"

"Sore skin"

"Ouchy Mum"

Soaking in the bath

Itchy and ouchy

                                                           Looking great!

Cuddled up to Mum snoring! 

Harry's blood stained top.

ONE HEALING, ONE STARTING THE JOURNEY!

I was supposed to be working for the school holidays but we made the decision a week prior to the holidays starting that it wasn't fair on everyone for me to go away for two weeks. Last time I went Oscar didn't cope so well and now with Harry going down hill it wouldn't be fair to Andrew to be up all night long to both of the boys. The holidays have come at the perfect time for Oscar to get some well needed rest and sleep ins. He has been waking anywhere between 8a.m and 9.30! The nights are still long but we have had a few nights of Oscar waking the usual amount of times but not scratching for as long. I'm still waiting to hear back from our last doctors appointment from two weeks ago about what else can be done to help Oscar sleep. I have left a message to remind her and still no phone call. In all honesty, this doesn't surprise me!
Oscar has a cough at the moment that he can't seem to get rid of. He has had a temperature four out of the last five days. It seems to spike then go down then spikes again. His body is obviously working overtime to try and get rid of his cough. I'm assuming it will take his body longer to fight bugs with his immune system being suppressed.
Oscar's skin is looking amazing. The backs of his legs are still healing but compared to a month ago they look great. Oscar is so much happier within himself now and when we got out of the car to play at the park the other day he looked at the other children playing and said to me "Mum I look like a normal boy today". I asked what he meant and he replied "I don't look like an eczema boy". As he ran off to play this made me wonder about the timing of what he had just said. Has he felt self conscious about his skin more than we had realised? We have previously not had mirrors at Oscar's level and never showed him photos of himself but we have been showing him lots of photos of this journey and the photos over the last week have put a smile on his face. I can't wait to see Oscar's skin in a months time..it might be completely eczema free!
 It has been very warm and windy the last couple of days- the perfect weather to put Oscar in full flare with the combination of heat and pollen in the air. His eyelids have been puffy and a few wee red blotches on his face have emerged but the rest of his body is fine. It is so reassuring to see that the drugs are doing what they should, making Oscar far more comfortable than he has ever been.
Today marks Day two for Harry's journey of Topical Steroid Withdrawl. I have knots in my stomach thinking about what we are in for with our little man. His skin takes about three days to change for
the worst. Thankfully he loves the bath as he might be spending the next few months in it!
I am hopeful that he will bounce back quickly and that I have the strength to see him through this.

Oscar's arms

Check out how clear Oscar's back is

The back of Oscar's legs