I CAN SEE CLEARLY NOW....

That we are getting some decent sleep! Both Harry and Oscar are doing well. Oscar has had a few nights of sleeping right through but is mostly waking a couple of times a night and only briefly. Gone are the days of him being awake all night long itching like crazy and me patting like crazy, being too scared to move as the slightest of movement would wake him only to itch for another hour or two! Harry is sleeping longer and unbelievably slept right through until 7.30 a.m the other night- this was a first for him! I'm waking up now not feeling like I'm stuck in a haze and it dawned on me the other day while I was driving to school how clear it was out the window..because my eyes were in focus and I wasn't driving completely exhausted. Looking back on things there were certainly many mornings that I should probably not have been behind the wheel with my precious wee people in the car. However I'm positive those days might be behind us now. I am struggling to fall asleep at night as I'm just not used to the boys sleeping. I'm waiting for the sounds of hacking and crying. This has been our life for six years so I imagine it will take a bit for our bodies to adapt to such a change. Andrew is waking in the early hours of the morning and can't fall back asleep. He's used to only a few hours of broken sleep a night so his body is probably waking after four or five hours of quality sleep ready to start the day!
Oscar and Harry had their blood tests this week. I thought it would be easier to get them done together when I booked them in..anyone with three boys, or three children will understand how hard such a task can be but as we didn't have to wait long the boys were great! Phew. We got through the blood tests relatively unscathed. The nurses were relieved they drew blood first time round- we have had a few incidents of this not happening and Oscar understandably gets upset. Last round they had two attempts on Harry and I think it hurt me more than him having to watch him! Tonight at the dinner table Charlie told me he felt like crying watching Oscar and Harry have their blood tests. I didn't even think for a second how he might feel watching them! I'm so glad he was able to tell me how he was feeling. From here on in I will book the boys blood tests on a day that Charlie is at Kindy!
Harry's wee body has got worse as today has gone on. His entire back is red and splotchy and he's terribly uncomfortable. Last night Andrew heard Harry scratching and went to check on him to realise the noise he actually heard was Harry grinding his teeth in his sleep while rubbing his feet together. Poor wee man. It takes six-eight weeks for the methotrexate to build up and work properly. I can't wait to see my baby itchy free.
Oscar has been slightly itchier the last couple of days and I can't put it down to anything. ..but on a very positive note,  finally after nine weeks there are no more stomach complaints. Thank goodness! Oscar's  doing very well at getting to school too. He's only had one day off over the last two weeks and I'm hoping he will get to the end of this week. Oscar's happy to say goodbye when I drop him off. It makes such a big difference walking away knowing he's not crying. This has to be by far the quickest term we have had with Oscar missing so much school. I really hope next term doesn't bring any nasty winter bugs. One week until we get to have a couple of weeks going on some fun family adventures.

So proud of this strong and brave wee guy. 

Harry got this water trough for Christmas. This is the first time he's been able to play with it!

Recovering from an itchy episode 

A day trip to Queenstown 

A fun outing to the Toy and Transport Museum 

MINI OSCAR

We finally got Harry's allergy test results back this week. The specialist requested the children's food mix and on paper Harry's allergic to milk, fish, soybean, peanuts, wheat and eggs...Harry loves eggs! However allergy testing isn't reliable while going through TSW as your body is hypersensitive to everything . I believe If Harry was tested for environmental allergies these would have come up positive too. It seems Harry really is copying in his big brothers footsteps. Harry's Skin sadly has got worse this week..maybe it's because of the eggs he's had for lunch!! Last week I honestly thought we were over the worst of things. Harry was doing so well although he was still very itchy. This week has been a week of blood on the carpet multiple times a day. Harry's wee body has weeping, blood all over him. He has been distraught crying and saying his skin is ouchy and he wants to take it off... and he smells again! This was enough for me to except the fact that Harry needs to go on Immunosuppressants. I guess I was quite naive to think we were out of the woods. However I know how far Harry has come on this journey and hopefully he won't need to be on the drugs for too long. Enough to settle things down and give him a reprieve So that his wee body can heal enough to get this dam itch gone for good.
Harry had his folic acid a few days ago (this apparently helps to counteract some of the side effects) and lastnight he had his first dose of Methotrexate. Here we go again! At least we know what we are in for this time. Here's hoping this is another step towards this journey being over.

A NEW AND IMPROVED HARRY

The boys and I have been down and out over the long weekend with temperatures and a nasty cold and to top it off Oscar has impetigo on his face. This is something we have not had to deal with before and it's amazing to see it multiply before your very eyes! Thankfully it's clearing up nicely. Oscar was at the doctor for this yesterday and again today for a follow up on where to next for his stomach. His stool sample has come back showing a high level of inflammation. This really doesn't tell us much more so isn't a great help! If anything  it proves there is something wrong with him. The paediatrician suggested the next step is worming him and another dose of antibiotics for two weeks. Thankfully the doctor agreed with me and believes that antibiotics are not the solution. So monitoring at this stage and coeliac test in a few weeks with Oscar's next bloods. This was supposed to have been done already but for whatever reason was missed at the lab. For an accurate test there needs to be a little bit of gluten in your system for a few weeks so at least this way we will know for sure. Oscar's happy enough but still complaining of a sore stomach 3-4 times a day and comparing him to what he was like when on the last round of antibiotics there is a vast difference. This was the only time we saw Oscar up early to start the day!

On a great note, Harry is looking amazing! His antibiotics finished nine days ago and he still looks good. He seems to have 'normal eczema' so will see what the next few weeks bring. His skin also feels so soft. I can't help but touch his legs. Tonight before bed Harry pulled up his sleeves and proudly showed Charlie his arm and said "Feel my arm Charlie!". The last two nights we haven't wrapped Harry's hands and I'm very excited to say Harry has had two nights in a row of sleep. One night alone of sleep previously would have equated to three nights sleep!  The first thing Harry said when he woke up this morning was that he had a good sleep in his bed. Fingers crossed this continues. I believe this a massive factor in Harry's Skin looking well, he's able to heal with the amount of sleep he's finally getting. Harry is also eating now with no sleeves. It's so strange seeing him without sleeves on. The biggest thing we are still getting used to is seeing Harry wear proper clothes. ..not all in one suits backwards! The hair that has been rubbed off behind Harry's ears and also his eyebrows is beginning to grow back too. Gosh, so many positives in such a short time frame. Harry really is a different child and I'm hoping I can safely say we are over the worst of topical steroid withdrawal. This means that Harry won't need to go on immunos either.  He's still dam itchy and has moments of needing redirected but he's no longer sitting on the floor screaming and crying all day trying to attack his skin. This means we can finally start toilet training, Harry will be able to start Kindergarten at some stage in the near future and it's one huge step to normality for us. Most importantly Harry is able to play and learn and enjoy a life of being comfortable again. The biggest damage is to his feet still but in time they will heal, as will Andrew and I. This has been one hell of a journey and our children have had to come first. Their health and their healing has been paramount. Andrew and I...and our marriage will be the next step in healing. Again this will take time but we will get to where we need to be.