HARRY HOUDINI

The holidays are here thankfully and it's so nice having Andrew at home to help out.
Harry isn't doing so well at the moment. He's barely sleeping, frustrated and grumpy. Today he had a three and a half hour sleep during the day.  His poor wee body is trying to play catch up.
Harry has figured out how to take his scratch me not sleeves off! Andrew watched him doing it. He puts one hand between his knees and pulls until he can get his arm out. He's also worked out how to pull the hand sleeve back too! Harry's very proud of his new found skill, proudly announcing that he can take his sleeves off all by himself.
I found blue bandages the other day while I was at the chemist getting more dressings and I couldn't resist buying it. Harry was so excited and said "I can show my kindy teachers!"
I've been sitting in the back of the car when we go for drives out and about to pat Harry when he gets itchy as this is a common occurrence in the car! Doing this has definitely reduced some damage.

Charlie had his very last day of Kindy on Tuesday. He had his special birthday mat time last week. It was so cute watching him on the couch confidently talking in front of his friends. I can't believe he's nearly five. How did that happen so quickly?

As I write this I have Oscar on one side of me naked, wrapped in towels and Harry on the other side of me and it's 9.30 in the evening. When will this end? When will our children sleep normally? I remember thinking when Oscar was two years old and itchy all over and not sleeping, that before I know it he will be five years old, at school and he won't be itchy. Five years on and we are still on this journey! How naive I was.
It's fair to say we are in survival mode again. I don't know how we do it but we do. We have to. I'm looking forward to our next reprieve whenever that may be.

Well Merry Christmas to everyone reading my blog. I wish you a wonderful day with those you love.

Thank you for taking the time to check in on us. It really is very humbling to see so many people taking the time to read our blog. xx

One very sore neck

Distracting the itch

Blue bandages 

Harry hiding under the table to scratch

Charlie's special mat time at Kindy

A rare sight.. Andrew snuggling with Charlie to get him to sleep.  Doesn't suprise me seeing Andrew asleep too!

SICK OF THE SIGHT OF BLOOD!

A mentally exhausting week. I feel like I have let my wee men down because I can't fix them. What else can we do to help them? Andrew and I work so hard every day..and night to care for the boys skin, prepare safe foods for them and to keep them comfortable and happy as possible but it doesn't seem enough. Oscar's spotty all over his body except for his face. He's having trouble getting to sleep, staying asleep and is very non-coping. The smallest of things upset him. Frustration and tiredness set in very quick. Oscar also had Thursday and Friday off school with a nasty cough and temperature.

Harry is still attacking himself.  It sounds so horrible writing that but I don't know how else to explain when he starts itching. It's not really an itch at all. The concentration and effort he puts into it. I've lost count of how many times he's made himself bleed this week and how many times I've cleaned blood off the carpet. I actually want to scream at him to stop as it upsets me seeing the damage he's doing to himself! Yesterday once he saw the blood on his legs he started saying "Shiver me timbers" over and over again followed by "Shit, shit!".

Andrew has two more days of school next week then is home for six weeks. It will be great having another set of eyes and hands to help with Harry.  Fingers crossed between us we will be able to reduce his scratching and promote some healing.

On a brighter note,  we put up our Christmas tree this week. We have three boys very excited about Christmas.
My Dad and his partner Michelle stayed with us last night and we had an early Christmas with them. Today we also took the boys to see Santa. Harry wouldn't go near him! Charlie wants lego for Christmas, Oscar wants lego and a Hamster, Harry wants a helicopter and I want itchy free children!

A rough week but thankfully finished off with a lovely weekend.

"Shiver me timbers..shit" 

BACK TO BANDAGES

The ouchy bits on Harry's wee feet and arms are just not healing. They look like they are going to scar so we've gone back to bandages to try and help his skin. Sounds like an easy fix but with Harry getting itchy,  he does all he can to try and get to the areas that he wants to scratch.

I went to the chemist today to get more bandages. We walked in and the shop lady said "Oh dear has he fallen off his bike?"
I had to giggle considering that's what I wrote in my last post!
Harry's all bandaged up with dressings and a very cool green self sticking bandage. I have no idea if it will work, however I'm hopeful.

Oscar's very itchy again this week. As I write this at 9.22p.m, he's sitting next to me on the couch. It took an hour and a half to pat him to sleep for all of twenty minutes and he then came running out to the lounge screaming "I'm itchy".

The paed appointment was good on Friday. He said the only thing we need to watch out for with Oscar having horse shoe kidney is urine infections, kidney stones and to make sure he's hydrated as this will help to avoid these occuring.

On the weekend Charlie told Oscar that he's glad that he's not him because he doesn't want to be itchy and have eczema. Oscar got so upset and told us that he hates himself because he has eczema.  It's so sad to hear him saying this, it breaks my heart.

Harry had kindy today so Charlie and I had Charlie and Mum time. When I tucked him into bed tonight he told me he loved Charlie and Mum time. It really is lovely spending one on one time with him.

Andrew has been unwell for the last five days. Probably end of term/year sickness combined with the extra stresses of home life. Not being able to sleep it off doesn't help!

It seems we are in for another challenging week with Oscar's skin and sleep..
And who should appear as I finish this? Harry! The night shift has officially begun.

My wee green mummy!

Itching...

More itching! Green bandages haven't worked tonight!

Too itchy to sleep

Charlie sleeping like a non itchy child and oblivious to our night time craziness 

NOT SO SIMPLE CAR RIDES

A car ride for most is uneventful. You get in the car, drive from A to B and not much happens in between except for perhaps turning up the radio and obviously following the road rules. If only it was that simple for us. Firsty I have to make sure my precious cargo are in their car seats safely. Sometimes needing to double check as Charlie has recently learnt to undo his seat belt!
We drive for a few minutes, sometimes ten if we are lucky before I hear the hacking of skin being teared apart. Then the sound of screaming as Harry scratches to the point of bleeding.  There is nothing I can really do to help him either until we get to our destination. Sure enough I open his door to the sight of blood on his legs, arms and wee fingers and understandably Harry's beyond upset.  A drive in the car is the perfect time for Harry to scratch. I have thought about putting his scratch sleeves on for car rides but he gets so upset when we put them on but if it saves his skin it's worth it. My ears are already damaged from Harry's screaming so I'm sure another round while putting his sleeves on won't do too much harm. Andrew pointed out tonight that it looks like Harry's fallen off his bike and grazed his arms and legs. Perhaps that could be my new line if random people ask about his skin!

Oscar's ok for small trips in the car but anything too long then he gets a sore bottom from the eczema on it. His body has itchy spots all over it at the moment. We reduced his immunos last Thursday by half a pill so highly likely this is the reason. Fingers crossed he doesn't get any worse. Oscar's only been at school in the afternoons this week as the children have swimming lessons in the mornings. Oscar unfortunately doesn't want to go swimming and it's good he hasn't with his skin the way it's looking. He's afraid of the water making him itchy and highly likely it would but we didn't want to say no if he wanted to try.

Oscar woke this morning to a swollen and hard hand where he was stung. We iced it again and gave him some antihistamine that seems to have helped. Strange it hurts again six days later.

We have a paediatric follow up appointment tomorrow for Oscar's stomach issues, or lack of thankfully.

Two weeks until Summer Holidays. Fingers crossed Oscar can make it to the end without getting sick or itchier than he is at the moment.

A wee opportunist at work! 

Charlie being a kind brother by patting Harry

Itchy spots...

And more spots!