A HUGE MILESTONE

Oscar is officially 6 months steroid free and Harry is 5 months. What an achievement for our wee boys. We are very proud of how far they have come. Oscar is on night three of putting himself to sleep so once this is established he will hopefully be able to start the night off in his bed. Oscar's eczema bits have flared up again. He has eaten mandarins this week so I'm wondering if this is the cause- wild stab in the dark really! Oscar has been complaining of being tired this week (more than usual that is) and has been very unsettled at school drop off, crying and not wanting me to leave. It doesn't help that we are usually late every day as he doesn't wake until anywhere between 8-10am! I'm hoping it will blow over and he will be happy at drop off again. I know he's fine once I have left thankfully and I know that he does love school.

Harry is still happy enough but he's made a mess of his neck and behind his ears - to the point that he's rubbed so much he has lost some of his hair. This shows how intense the itch must be. I have also discovered today he has blisters on the tips of some of his fingers and thumbs from rubbing so much.  He's also had another go at one of his feet today. Harry is back to having a terrible stench about him. His room smells after his day sleep and at night, even Oscar and Charlie have commented that Harry smells! From time to time I feel nauseous when I get a wift of him! It's so hard to describe. It's like he radiates heat and when you walk into his bedroom it feels almost humid and I just can't figure out the words to describe the smell! He's not oozing at the moment but still has a distinct smell to his skin. I'm sure this will reduce as he continues to heal.

Overall he's come such a long way too and I can't wait to see what both Harry and Oscar's skin looks like in a few months time. I was hoping to do a slideshow of photos of the boys skin from six months ago to now but haven't had the time so will post this in a few days.

Lastly thank you for reading this blog. Today marks just over 5000 hits! It's quite humbling knowing people care enough to take the time to check in on us. Thank you for the lovely comments on here and via Facebook from family, friends and People we don't know. Kind words and encouragement help us to keep focused on the end prize, itchy free, steroid free, drug free... happy children!

ANOTHER WIN

Two weeks in of Oscar's new diet of fruit,Veges and meat and his skin is looking unbelievably better! When Oscar started on methotrexate his skin completely healed. The burning and swelling disappeared. A few weeks later the eczema appeared. This started in October and we haven't been able to shift it- around his neck, under arms, upper thigh/ groin area, bottom and behind the knees. Oscar's skin has healed so much in such a short time and he even said himself "I don't feel so itchy"
I suspected corn as the wheat free breads and flour for baking is maize based. Oscar's had a slight cold this week so this puts us a step back however I'm hoping the next couple of weeks bring even more healing for him. Oscar even slept on Saturday night for 14 hours! He woke a few times but very briefly. Quite possibly this could have been the best sleep Oscar's ever had!

Harry is still happy enough but he's attacked his feet and legs this week. Lots of broken bright red oozing smelly skin. Even after a bath he smells! Harry's wee face is very dry too but I have to keep reminding myself how far he's come. He's back wearing an all in one suit with his sleeves. We still bandage his hands at night too. If only we could do this 24/7! All Harry's clothes are stained  yellowish from the ooze or red from blood. I can't wait to buy him lots of fresh new clothes but there is just no point at the moment as anything I buy will get ruined after a few wears. One day he won't smell and will be able to wear nice clothes! He really looks like a wee mismatched wee guy with his suits, sleeves and gumboots!
Harry has had a couple of nights where he has slept four hours before waking. This is pretty monumental for us so hopefully we get more of these nights as usually it's four hours total sleep for a night. We won't know ourselves when our wee men start sleeping all night!

A very sore leg!

Oscar's neck is finally healing

HAPPY HARRY

I'm so excited to let you all know that we are finally seeing visual signs of Harry healing! I know there has been a lot of healing from within that we can't see but just over the last week we have seen significant changes in Harry's skin and his overall well being. Harry's talking, laughing, playing. He's no longer snuggled upto me all day long. It feels like he's become independent over night wanting to walk rather than be carried into Kindy and school and doesn't feel the need to carry his Kane(snuggly blanket) with him everywhere. I cannot express how relieved both Andrew and I feel- we have our wee guy back! Harry's legs no longer look burning red and his stomach is beginning to look that way too. His arms are the worst with lots of broken skin. As soon as the sleeves are off Harry literally attacks his arms and we have to restrain him to get the sleeves back on! His overall appearance is less severe and over the last few days Harry doesn't seem to be smelling like what we refer to as 'rotten flesh' as much. I whole heartedly believe stopping moisturiser has been the key in his turning point towards healing.  Strangely though Harry has gone back to not enjoying the bath. The last couple of days he only lasted a couple of minutes before wanting out and today he didn't want in the bath at all. He's gone from loving the bath to hating it to loving it and now back to not wanting to be in it! He still has awhile to go on this journey but we really are on the right road to healing and I no longer need to self doubt. I can let go of some of the guilt I hold- watching Harry completely miserable and in pain daily for close to five months has been torture for us all! Hopefully in the very near future the insomnia will start to subside too. I'm not expecting everything to change quickly. It will still take time but I believe Harrry has overcome the worst of his steroid withdrawal. I have tears in my eyes as I type this! It's such an emotional roller coaster. Mentally I have more strength than ever to see this through now.
Oscar is on day three of his meat, fruit and vege diet and is happily embracing it. He's having platters of food for breakfast rather than a traditional breakfast in a bowl. He informs me that his food looks fancy so I must be doing something right, especially as he has eaten everything out of his lunchbox this week too. Why does healthy eating have to be so dam expensive though? We did a similar diet last year in terms of gut healing in the hope of that helping Oscar. Obviously it wasn't our magic answer but we also had intolerance tests done so this time round we have a clearer picture of what we need to avoid. My fingers and toes are crossed that in a few weeks we might see some more healing with Oscar.. If not we will need to go through his food list and refine it further. We will get him eczema free. The photos below of the two pink balloons were made by Oscar this week. The happy balloon apparently has no eczema, the sad one has eczema. Very interesting seeing these emotions portrayed through play.
Oscar is nearly six months steroid free- what a milestone for him. Thinking about all those days- mornings and nights when we applied steroids all over his entire body plus emollients and concoctions of all kinds. We had no idea the damage we were causing and what we were in for! I'm so thankful that the  boys are both healing and I can now for the first time in many months visualise a fun and happy future for our family. I'm so excited about this prospect!

A balloon with eczema

A balloon without eczema! 

Lots of broken skin on Harry's arm

Check out those legs.. Not much red!

                                                           What legs should look like!

Oscar finishes his school duathlon after a night of not much sleep

Charlie had his first Kindy triathlon too!'