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.