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.

HAPPY NEW YEAR

Another year ticks over. We are now six whole years on this journey of trying to get our children itchy free and healthy. Will 2017 be our year of achieving this?

We had a lovely Christmas catching up with family and friends. The boys got kayaks for Christmas so we have had a few days playing at the lake, even Harry has had a wee play in them.

We got a heat pump installed a couple of months ago to keep the bedrooms cool in Summer. Last year it was 35 degrees inside, not ideal with itchy children. Yesterday was particularly hot so it was just wonderful having the heat pump on keeping us cool. Although it didn't help Harry sleep any better. He's a wee mess at the moment. We've just started him on Skin Friend and his immune suppressants have been slightly increased so I eagerly wait to see if it helps. Harry's also taken to caring for his skin. I checked on him at bedtime the other night and he was on the floor with tissues in his hand dabbing the blood from his legs. Andrew got Harry's bandages ready a few days ago and Andrew went to get the scissors and Harry had started bandaging his own leg!

My news resolution is to work harder than ever to get the boys well. That means being super strict with foods, keeping on top of supplements, caring for the boys skin. Actually I do most of this anyways but I want to follow the eczema diet as much as we possibly can. 

Lastnight was a good start. All three ate leeks! I sauteed the leeks and added maple syrup and salt and it slightly caramelises the leeks and makes them sweet and they really are very delicious.

Oscar has impetigo and a croup cough and is constipated again this week. How can he be run down when it's the school holidays? He slept nearly the whole day away as his wee body fights to get better. We have reduced Oscar's immnos by half a pill this week. So close to being drug and steroid free! 

 Harry has yet another cold too. Although it just seems to be a forever cold with a few days in between of being better. Charlies healthy thankfully! He told us today he is different from Oscar and Harry becasue he's not itchy. 

We also celebrated Charlie's 5th Birthday last week. We had a wonderful family day out to a Jarassic dinosaur safari and then had cake at the lake with family.

I thought having Andrew at home would be a huge impact on Harry's skin healing but he's just so quick at tearing apart. If anything we have probably reduced the amount of times he's done this as I've been sitting next to him in the car!
Hopefully Harry has a reprieve soon. Its been a long time since the last. Harry, Andrew and I could do with some sleep.

Practicing in the kayak on Christmas morning 

Dinosaur safari park adventures

Mr '5'

Harry bandaging himself!

Harry and Oscar chilling out with a well deserved lollipop watching the medical centre's I.Pad. No tears today from Oscar and blood tests done first try thankfully

Harry this time last year