TOTAL ELATION

Harry's not itchy. He honestly isn't! We were in desperate need of a reprieve and it came. As I said last time we have started Harry on Skin Friend and his immune suppressants have been increased too. We also decided to give Harry's worst areas a few days of low dose steroid cream -that's how desperate we were! Andrew and I both agreed one round of a few days and that was all. I think the combination of the above has worked in helping Harry immensely.  The last dose of steroid cream was six days ago and no rebound thankfully. We certainly won't be using it again and we are thankful that there were no side effects. I felt sick and guilty using the cream but Andrew, Harry and I were at an all time low.
Harry's amazing at taking the Skin Friend too so that makes medicine time a breeze. Gone are the days of Harry vomiting meds back up or both Andrew and I having to restrain our poor baby to get meds into him!
So, Harry's skin... I don't even know how to describe it. It looks like normal soft skin - although there is a lot of scaring his skin feels soft and so strange to touch. His skin has felt like a combination of wet weeping, sticky blood, burning sandpaper for the last 16 months and now when I touch Harry I get goosebumps! It's so exciting.
Harry is also sleeping through the night for the first time in his entire life!  He's had six nights in a row so far. When he woke up yesterday he examined his leg and said "Remember a long time ago when I had blood all over my legs?". I asked where it had gone and he told me it dried up.
I'm petrified Harry will wake up and be itchy but this is the reprieve we needed, even if it's short lived. We will enjoy having a happy, healthy Harry (minus the forever cough) while we can.

Oscar has had a rough week. Andrew promised the boys hot dogs and chips for dinner and we thought the fish n chip shop had gluten free hot dogs. Unfortunately they didn't so to avoid disappointment Oscar had a mini hotdog.
He woke up the next morning with vomiting and diarrhea. It was so violent that he couldn't make it to the toilet a couple of times and was also sick on the carpet and couch. His poor wee body was poisoned! Andrew was terribly upset that he bought the hotdog but this whole journey is certainly trial and error.
Crazy how something so small can make someone so sick. Oscar has had so many bouts of vomiting and diarrhea over the last year that I wonder if they have been food related or cross contamination and we haven't realised.
Andrew and I went to the doctors this week without Oscar to document his reaction and discuss where to next as he's still getting sore stomachs and constipation. She's going to get in touch with paeds again at the hospital. In the mean time we are increasing the lactulose dose and trying to increase fibre to keep Oscar regular to see if that helps any. We have decreased Oscar's immunos yet again and now have one pill to go! After a couple of months of being off of them Oscar's allergies will be retested. Before Oscar went on the immune suppressants he was allergic to pretty much everything, food and environmental. The purpose of being on immunos was to dampen down Oscar's immune system as it was over reactive. It's now had a holiday for a year and a half, resetting itself so we will be able to finally find out what Oscar's real allergies are, if any!

On a final note and absolutely nothing to do with skin, illness and allergies, Harry mastered how to ride his pedal bike this week! Proud parent moment. We officially have a biker gang of boys now.

Check out these legs. ..no blood or bandages!

                       Harry's beautiful skin!

Wahoo! Harry rides his pedal bike for the first time.