A WEEK OF FIRSTS

In terms of Harry's health, this has been the best week he's had in 11 months! His skin looks great, he's sleeping better and is finally having a bath without screaming! Harry looked slightly confused realising that he wasn't in pain in the bath! When it was time time to get out he said no! He's even had his first disco shower, (We have a shower head that flashes different colours).
Harry has also been very settled in the night too. He's had two nights of sleeping until 5 a.m then snuggled in with Andrew until seven. He woke up the other morning and said to me "I'm not ouchy under my chin now and if I scratch it I will go to jail!". Not quite sure where he got that from. Harry would have been sent to jail long ago if that was the case!
Harry is wearing shoes again! His feet have some pretty good scaring on them but im sure this will fade over time.
He's also telling everyone he has eyebrows now! He keeps putting his hands up to feel his eyebrows and asks "Do I still have eyebrows!".
Oscar's Skin looks unbelievably good too! He has a small amount of eczema on his bottom and not one bit anywhere else. Now that his inner elbows are clear we can see that his arms have lots of scaring too. Lastnight Oscar got out of the shower and with a big smile said "Mum I don't have any eczema on me". Music to my ears! Fingers crossed this continues. We have established a good routine now with the boys supplements and they are both happy to take them - Harry used to vomit them up!
Oscar is still complaining of sore stomachs but no V&D in three weeks. He has an ultrasound next week but I'm pretty confident it will be clear. He's sleeping through most nights too!
We've been given the go ahead to take Oscar off the immunos over Summer. A very exciting yet nerve wrecking time! I look forward to getting his allergies retested at some stage to see what is really going on with his body. It would be great to try and reintroduce some more foods if we could so he has more variety. Imagine being able to go out for a family meal at a cafe or restaurant!
I can't believe how far we have come on  this journey. I feel like the last two weeks have been massive with both Harry and Oscar's bodies healing.  The increase in the immnos for Harry has kicked in and is helping hugely. He's a different child - a happy child.
Is it possible we are actually heading towards the end of this journey after six years with Oscar? It feels like it, I cross my fingers we are nearly at the finish line.

Disco showers are so much fun!

I love this picture! Such a big milestone seeing a smile on Harry's face while having a bath

Harry's legs 

Oscar's arms haven't looked this good in six years!

WALKING ON EGG SHELLS

Oscar is so much better thankfully. What a brutal few days for him. He's had it all over the last week, power chucking, going at both ends and not being able to keep it in while trying to get to the toilet! Fair to say lots of washing and cleaning too!
Oscar finally had some massive sleeps over the weekend and his skin is healing again. I've noticed that his skin gets worse a week before the v&d then starts to heal only for it to happen again.  Will be interesting to see if we can see a clearer pattern of this if it continues. We saw the paediatrician last Thursday and It was pretty much what I expected so I wasn't disappointed. He believes Oscar initially had a gastro bug and now because of that his stomach is extra sensitive and something is irritating it. No kidding! Possible causes are food, Oscar's immunos or something else. So clearly he has no idea at all. He's not worried about Oscar's lack of weight gain, and thinks we should take Oscar off the immunos incase it's causing the stomach problems. I'm not sure how he can make this statement without actually talking to our specialist first. So basically he thinks Oscar will just get better by himself and crosses his fingers as he tells me this. We are getting an ultrasound done too at some stage then a follow up appointment. We also left with a prescription for a stomach anti-inflammatory so when I can predict Oscar's going to get sick I can give it to him to help reduce the severity of the V&D. These have to be taken prior to it starting so they're a fat waste of no good. Thankfully we have a repeat prescription!
So now we watch and wait. It's a horrible feeling waiting for your child to be sick!
So all of this was relayed back to Lisa and she has another opinion. She believes Oscar may have a worm or parasite infestation or an imbalance in his gut due to too many antibiotics. All of that completely makes sense to me. Oscar is still eating when he's sick. He can't eat enough! I never thought he had a stomach bug right from the start for this reason and also the pattern of vomiting every second night. So we will now start the first step of treating this with Lisa and see if this helps! I need to do more reading on it all myself before I can completely explain it all.
Harry Is still itching his wee feet and under his chin and neck. He keeps opening the patch under his chin so it's an open wound. He then wants us to pat it, Yuck! He seems to be itchy until 9.30 in the morning then lunch time when he's tired and again at bed time. Then the night shift of itch begins.
If he didn't itch he would heal but the itch is too overbearing for him.
Today when I dropped Charlie at Kindy we were doing a puzzle together. I could see Harry through the window sitting on a digger in the sandpit. A wee girl from kindy kept bending down and was looking under his chin. I was wondering what in earth she was doing until I saw her pull Harry's sleeves up to look at his arms then back to his chin and neck then she tried to look at his back but Harry had a bodysuit on so she didn't get quite that far. Then she pulled her sleeves up and her top to investigate her stomach. I'm hoping she was feeling reassured to see her skin didn't look like Harry's!
Well Andrew survived camp last week and we got through a rough week here. Thank you so much to my Mum for coming to stay for the week to help us. Thanks for your company, yummy meals, cleaning out Oscar's sick bowl in the middle of the night, and for your love xx