MERRY CHRISTMAS

Wishing everyone a very Merry Christmas and hoping it's a wonderful day of fun and laughter with family and friends.
A lovely day here watching our boys faces filled with excitement seeing that Santa had been. Tearing into their presents with anticipation and delight!  Sadly Santa didn't bring Oscar everything he wished for. His wish list consisted of looking like Charlie and having no eczema. However he did get a nerf super soaker that has been a big hit! A very hot 35 degrees though but we managed to have Harry in his nappy for a short while this evening before scratching and even a stint on the couch with just a towel on him after the bath- usually he needs dressed in his wee p.j suit straight away otherwise he scratches until he bleeds. All great signs we are heading in the right direction! Gosh he really has come along way. Oscar's skin infection is still lingering so we are smothering him in Manuka paint in the hope of nailing it soon. The heat isn't helping his itching though!
Right I need to sleep while I can.
Wherever you are in the world, I hope you have had/are having a lovely Christmas.

A rare moment of no clothes! 

A GOOD WEEK FOR ONE AND NOT FOR THE OTHER

A good week for Harry and not so good for Oscar.
We have started using an Avene emollient balm that is helping Harry so much. He's nowhere near as itchy and only slightly dry compared to what he was like. He has even had a couple of hours here and there throughout the week without bandages on! Within himself he is much happier and seems to be enjoying bath time again. Harry had one good sleep last week but I had put that down to the fact he had a cold, however lastnight he had a settled sleep too! It has been a long time coming so hoping for many more of these nights.  We are so relieved to see Harry much more comfortable this week and to see more smiles on his wee face. We were very kindly gifted the Avene cream from a very caring and generous lady who knows all to well about allergies and eczema. Thank you Emma for thinking of us and for your generosity. We are currently working on getting friends in the U.K/America to source some more Avene cream for us as its half the price over there!

Oscar's on another round of antibiotics for his never ending cough. He also has a skin infection that we have been working on healing naturally- antibiotics will help clear this too. As Oscar is on the immune suppressants his body has a hard time fighting infections so this prolongs him significantly in getting better. We have also been prescribed melatonin. Prior to this we have asked two doctors and a specialist about this and all have said no. A paediatrician that our doctors consult with has recommended we try this in conjunction with phenergan. It's still too early to tell however I have noticed Oscar is still stiring lots but not completely waking every time. Once we are on top of the infection it will be interesting to see how the nights are for him.
We are one week into the holidays and it is wonderful having Andrew home. I don't feel so consumed by Oscar, Harry and Charlie's demands! Andrew took Charlie out for the afternoon yesterday for special 'Dad and Charlie time'.  Having us both here means there will be lots of opportunities for one on one time with the boys. I'm very much looking forward to quality time with my wee boys.

Lots of white shining through

  

Finally, A big smile after bath time! 

A GOOD WEEK

As we have finally realised Oscar's body is trying to battle a skin infection, we have been using Manuka paint mixed in with his creams. He looks so much better and the last two nights he's fallen asleep straight away. Previously he needed patted until he drifted off anywhere between 9-10p.m. He  stays asleep for no longer than 1-2 hours but it's a positive sign that he's feeling much better. It's great to see some healing. Harry has had a happy week also. He seems quite comfortable and even managed half an hour with no bandages yesterday before scratching. We can see lots of white skin almost hiding underneath all the inflammation. We just have to be patient! He seems to be losing lots of skin again this week, big flakes instead of the breadcrumb appearance! Harry slept in his bed lastnight from 7-10.45 which is great for him. He then cuddled in with me and was restless for a couple of hours before falling into a deep sleep. I don't feel wiped out today so he must have slept reasonably well.
As an Early Childhood teacher I understand the importance of children's play. When children role play they are making sense of their wee worlds. Children love role playing shops, teachers etc. This week we watched our beautiful boys caring for Baby Daniel- A toy doll. They had turns of putting cream on him, wrapping him with bandages and socks. Initially Harry watched his brothers and towards the end he joined in telling them what to do and helped to pat the doll as it was itchy. Creams, itchiness and bandages are Harry's normality and seeing this played out I believe was comforting for him. In fact the next day after getting his creams on he told me Baby Daniel needed his cream on too. It was such a touching moment for Andrew and I to see all three boys showing their nurturing sensitive sides and also it was sad that this really is their life. Both Oscar and Harry have felt pain like no little child should feel. The worst thing for us as their parents is not being able to take that pain away for them.
I really do think we are over the worst for Harry and we are now waiting for more white days and less red. Oscar has also come such a long way in the last few months. I feel that he has a long way to go as the immune suppressants are masking what's really going on in his body and obviously we are still no further ahead with him sleeping but I think this week has been a turning point for both boys with Harry appearing more comfortable and getting on top of Oscar's infection. Fingers crossed for more of these weeks.

JUST THE USUAL WEEK

I don't know where this week has gone! Harry had another day of white skin. He's no longer burning however he is still very red. We had a very hot day this week and the poor wee guy had to wear his pyjama suit and bandages. We have learnt it's not worth the damage to his skin wearing proper clothes. We went to a kindy picnic a few nights ago and put Harry in socially acceptable clothes and by the time we got there from our house he managed to rip all his bandages off and his arms and feet were bleeding. We must have looked like a sorry sight walking in! We rebandaged him and there were enough distractions there for him to forget about being itchy. His wee pyjama suit backwards is a skinsaver! I sewed some socks into one of the suits for extra protection for Harry's feet. Unbelievably the socks haven't been ripped off yet-the strength of them is probably not so good as sewing is not my forte!
Harry had a really happy day yesterday, the happiest he's been in quite sometime so he is starting to feel better within himself. He has been having great day sleeps too in his bed so another good sign that's he's less itchier. Night sleeps are still erratic though. We inspect Harry's skin every time we take his suit off and comment on how it's looking. Now when I take his suit off Harry tells us"Looks mazing!"
Just the usual week for Oscar. No big itchy attacks but the same consistent itching all night long. His tummy,lower back, bottom and boy bits seem to be the worst parts! His eyes are also puffy again so I not sure if this is environmental or food related..or both!Also another blood test this week and not one tear. Such a brave wee man.
We have just realised over the weekend Oscar has a fungal infection on his penis and testicles at least this is what we think he has.  We needed to make another appointment for the doctors so will get this checked out too.
Oscar didn't fall asleep until 2.30 a.m Friday night and 12.30a.m last night.  When I say fall asleep I don't mean he slept from that time until the morning. That's the time he finally nodded off to get some sleep between waking to itch throughout the rest of the night. We have had a very busy day today with a birthday party, seeing Santa and a play date at friends. Most children would be exhausted and sound asleep by now- It's 10p.m. Oscar is wide awake still sitting on the couch as he tried to sleep but due to being so itchy he just can't.  Hopefully we can get his boy bits sorted and he will be feeling less itchier.
This time next week Andrew will only have one day of work left then holidays for six weeks. This will make a huge difference with both of us home to care for the boys. I can't wait!