TWO ITCHY!

Harry's much the same as last week, if not worse. I want to fix him so badly but I don't know how. When he gets tired he itches more. This is usually about 2p.m or when I'm cooking dinner. A very convenient time to itch while I'm preoccupied! Harry's started hiding again to itch too.

Last week driving into town Harry scratched his arms to the point of blood dripping from his arms! You can imagine what a sorry sight we looked walking into the chemist. Harry was most impressed when he saw yellow bandages there! Yellow is his favourite colour. We've gone through another $30 of bandages in the last six days. I hate to think how much we've spent on dressings and bandages over the last year. We tried to bandage Harry's stomach too and used gladwrap over it so he couldn't undo it. It actually worked but he ended up in a rash from the gladwrap!
On a good note, although Harry isn't sleeping well he's waking up in a reasonably happy mood. He had a cold last week which he kindly shared with me but he's bounced back quick. This is another reason he's probably itchier too. We are trying wet wraps on Harry's wee arms at the moment and I'm suprised as they have lasted the longest on his arms out of all the bandages. Hopefully they feel more soothing for him.

It has finally been hot here over the last week and I think this has made Oscar itchier than usual! He's had a few rough nights of not being able to get to sleep and finally falling asleep close to midnight with regular intervals of waking through the night. It's only a matter of time before he gets sick..or is it? I just assume this but now he's off the immunos things might be different. He's back to watching you tube throughout the night to distract and calm him down as well as ice packs on the itcher places.

Charlie started keyboard lessons this week and loved the first class. It's so neat seeing him enjoy learning. Long may it last.

Andrew and I just keep battling through this parenting gig. We have had brief periods of less itch lately and that has been wonderful but I don't allow myself to be too optimistic about it as I know that is exactly what it is. A brief moment of things being slightly easier as another wave of itch heads our way.  It may sound like a negative way of thinking but I don't mean it to, it's actually our reality and I have accepted that. I don't like it one bit but after six years we really are used to it!
I just wonder how long it will actually be like this for.

All glad wrapped up!

Another bloody car ride

MR BANDAGE BOY - AGAIN!

Yip, we are back to bandaging Harry's arms and now his stomach! Although this isn't an easy process! The patches on Harry's stomach have got worse as he's continually itching at them. They are pretty much open wounds that I'm really not sure how to care for. So far nothing is working, or nothing has time to work as it starts to heal, only to be pulled apart. So dam frustrating!
I don't know what is going on with his wee body. All I know is I'm Pissed off right now. Yes, Harry's come such a long way and is doing well compared to this time last year but how long does he have to keep putting up with this!  Eczema hurts, it itches, it weeps, it burns, it's debilitating for Harry and heartbreaking for Andrew and I basically watching on like a spectator.
I'm at a loss right now !

DRUG FREE!

It's been a busy few weeks so sorry for no updates. 

Exciting news on the Oscar front, he's one week drug free! When we told Oscar last week we were going to stop his drugs his whole face lit up! It really is one massive milestone for us and a step closer to going to Australia on a celebratory holiday of healthy children! A year and a half on immunosuppresants and now finally..and hopefully Oscar will be off of them permanently. I feel like this is a crucial time in making sure we are so so careful in what Oscar eats and really caring for his skin as best we can. 

In the next couple of months we will be able to retest his allergies too.

Oscar's stomach seems to be settled at the moment. We are sneaking Metamucil  into his smoothies so I'm hoping this will help. 

A big week for Charlie last week starting school. He was so excited to start, literally running to class where as Oscar was crying walking to class!

Charlie is loving school which is wonderful to see. Strange having two at school now. Harry's started three days a week at Kindy this term and now that his health is better I will be able to finally have some down time!

Harry's skin although looks good, has random itchy patches pop up. Then he itches them until they are raw and bleeding, making them obviously worse. To think his whole body used to be like that. He's waking again in the evenings and through the night. Last week he had three all nighters in a row but has been a bit better since then.

He had an allergic reaction last week to conditioner. I assumed it would be safe on Harry's skin as it was supposedly natural! He was awake all night itching and had a prickly red rash all over him. He has just recovered from the reaction in the last few days. A very silly mistake on my part!

It was my Birthday a couple of weeks ago and Andrew and the boys thought it would be lovely to surprise me by giving me a bungy jump! I didn't think it was a lovely present to say the least, in fact when I opened the card I said there was absolutely no way I was doing it. The boys had made signs and were very excited so when I said no Oscar started crying telling me that he has to be brave when he has blood tests so now it's my turn to be brave. Talk about a guilt trip! I knew there was no backing down once he had said that. While waiting for my turn the boys kept picking up toy sheep from the gift shop and were bringing them over to me telling  me to pat them and it will help me to feel brave. I wish I could say it helped. I don't think I've been so scared in my life standing on that ledge getting ready to jump. I cried before, during and after! We ended up buying the sheep called Marvin so that if one of us needs some help with being brave then Marvin will help. Marvin has an ear missing already as Charlie dropped him within five minutes of buying him, although having one ear won't hinder Marvin's bravery powers. Oscar has even taken Marvin to school this week and before we got out of the car Oscar put his hand into  his school bag and gave Marvin a pat!
I did get another present for my Birthday. A little kitten! Another brave move on Andrew's part. Thankfully the boys seem absolutely fine with her... However I'm allergic! I'm hoping over the next few weeks I will adapt to her. 

I have resettled Harry twice tonight and Andrew and I thought it might finally be safe for bed together. Andrew said "How long will we get to sleep next to each other?". Thirty seconds later Harry wakes again!  Andrew and Harry have gone to sleep in the other lounge and no doubt Oscar will make his way in here soon. So although things are so much better for us we are still playing musical beds and the boys are still needing pats in the night to help resettle them. We have come ao far that right now I have no right to complain.

I will be sure to update next week now that we are back into the school routine!

Mr School boy!

Harry having cuddles with Penny Lane