OK, I want to start writing about what's happening now rather than what has already happened. So this evening I'm going to rattle through most of the last three months in one or two big ol' post. I warn you now, I will go on.

Now to cut a short story long...

Two days after Ciara had the operation to clear the fluid on her hip joint, Dr Monaghan from the Medical team advised us that she had inflammatory arthritis. He was keen to point out that this was arthritis with a small 'A', meaning she just had an inflamed joints and was put on a course of steroids to try and shift it. We were told it might be something that we can get rid of for all or it might have been something that comes back through her childhood. The same night she had a 'brown alert' in the bed so was put into isolation in case she had a bug but it was probably down to the antibiotics though.

She was kept under observation in isolation for a few more days while her temperature was monitored. She was up and about a bit but it was very painful for her but still she tried. During this time Orthopaedics decided that there was not much else for them to do and her care was passed on to the Medical team under Dr Monaghan. Unfortunately at this point she was anaemic so they wanted her in for a few more days. Once her temperature had stabilised, the blood counts were better and the pain had subsided, she was weened off the steroids and sent home with orders to take an iron supplement called galfron and to have Neurofen and Calpol for the pain. This was Tuesday 23rd January so at this point, Ciara had spent pretty much a month in hospital apart from a small break. We were asked to come back for assessment in a few weeks. Dr Monaghan suspected at this point that Ciara had a form of Juvenile Idiopathic Arthritis, and the check-up in March would be able to pin-point what type. The word systemic was used quite a bit but doctors don't seem to like labelling a condition until it's been confirmed.

After spending January in a strop, it was great to see Ciara in a good mood! If she's not feeling well, or is sore, she will be in a bad mood. It's as simple as that, so the good mood was an excellent sign. However only one week later we had to call the hospital again as she was in so much pain. She hadn't really slept properly since she was discharged and would continuously cry with pain through the night. Our Lady's told us to bring her back in to be readmitted. We couldn't bring ourselves to tell her this at the time and only told her once she was on the way in the car. Yvonne and I could see her losing trust in us so we decided from now on the truth would be best, even for a three year old. She was readmitted on 31st January for further observation. Things were getting frustrating.

Thankfully she was only in for a couple of days, and we managed to get up to her grandparent's in the North for a little belated Christmas dinner. Not the happiest time for her though as she was still in a lot of pain. The steroids we were prescribed reduced the pain a bit but walking around was still sore and so she wasn't much of a party girl that weekend.

Unfortunately Ciara didn't make much improvement through February. She started complaining of pain now and then in her back, her arm and sometimes her jaw. All this still pointed to some kind of arthritis. Her temperature was peaking frequently and every now and then the pain was bad enough to make her scream. By late Feb she was limping again and complaining of a sore back. A call to the hospital had us down at our GP for a further course of steroids. This was the first time we'd seen our own doctor about all this, and he was honest enough to tell us he wishes there was more he could do. Unfortunately at times like these, local GPs seem to only be good for writing prescriptions.

At the end of February she was unable to sleep and was moving from room to room all night trying to get comfortable. A further call to Our Lady's on Friday 2nd March told us to monitor over the weekend and call back on Monday. Over the next week she did improve, the pain went down and her temperature stabilised, but our life was on hold waiting for the 15th March assessment date. The we would go through what's been going on and be given a diagnosis. Which Juvenile Idiopathic Arthritis will it be? Oligoarticular, Polyarticular or Systemic? Yvonne and I were making plans for dealing with a long term and painful condition that could stick with her into her adult life and could even put her in a wheelchair for much of the time. We thought she was going to have it hard then and it was very upsetting. How little we knew.

As the days lead up to the assessment, things didn't get any better and she was starting to get a sore head. All this time we put every symptom down to either a result of the steroids or arthritis. We were so wrapped up in that one thought that we weren't considering anything else. Then on Wednesday 14th March, a day before the assessment, her left eye started protruding and looked very peculiar. And so the assessment came about and Dr Monaghan asked that she be readmitted as soon as possible for a complete re-run of tests and for the eye doctor to have a look at her. He believed that the arthritis had progressed and was now the more serious polyarticular variety and mentioned that she will be going on methatrexate, a disease management drug used for long term medication. As it was St Patrick's Day weekend and not much would be happening at at the hospital, he sent us home and asked that if there were any change to her condition we should call his team. So we were sent home again due to come back in on Tuesday. That weekend we managed to get to see the parade at Newbridge, which Ciara loved! She was on excellent form and really enjoyed herself.

However she had a very bad night on Sunday night. Her temple had swollen up that evening and all through the night she was up every ten minutes trying to wee but failing. Monday we weighed up bringing her in early and face a wait in A&E. It was an easy decision. She was admitted through A&E on Monday 19th March to St Michael's Ward, Our Lady's. Even then Yvonne and I were thinking "Arthritis, Arthritis, Arthritis". Looking back now it seems so bloody obvious that it was something else.

By Tuesday morning it was made clear to us that the doctors weren't even thinking about the Arthritis, that would have to wait. The swollen temple and protruding eye were the main cause for worry and none of them had seen it before. They managed to get a slot for an MRI that day but due to a confusion with fasting, she lost the spot. They tried a CT scan but she was too agitated and wouldn't stay still so she would need to have one the following day under sedation. She was also booked in for a full body MRI scan towards the end of the week.

All this started to worry the hell out of us. Yvonne was told that it could be a viral infection causing the swelling or something more serious. She called me at work to tell me what was going on and I got the worst sinking feeling I'd had since this all began and needed to go and find a dark place to hide in for a bit. Her anaemia was bad again and she was due to have a blood transfusion the following day just before the CT scan. This was the scariest thing! Poor Ciara having a transfusion! That only happens to really sick people doesn't it?

Tuesday night Ciara was very unhappy. She did enjoy a movie with me though. We watched Ice Age 2 on my laptop. This was unusual in itself as she doesn't like movies after a bad experience while watching Finding Nemo (scary bit with the shark, bloody Disney!). Midnight that night I sent an email to my mum giving her an update of what was going on and telling her not to worry.