Frustrated

Saturday night Zoe started breathing loudly. Again no fever (as it is now impossible for her to get them), no complaints, she had been grumpy and tired.... but she is 2 years old and that is not unheard of.  (Lets go back to the beginning).....

When Zoe was diagnosed we had worked out her pattern; every 5 to 6 weeks she would get very tired, stop eating, have flu like symptoms with cough and runny nose, cry and cuddle a lot more. She would move around less and then between 3 and 5 pm she would get a fever daily which would last around 8 days. Her fever would spike 3 or 4 times in a 12 hour period, reaching between 39° and 42°. This of course would be accompanied by extreme pain all over her body. This pattern continued during her first treatment (Kineret) of daily injections. The specialist realized that her illness was stronger than the medicine so they put her on a medicine that she really was not meant to be given because the studies on the drug was not trialled on children anywhere near her age. We didn't get much of a choice, we just had to trust in what the doctors suggested. They told us her immune system would be affected greatly and that the drug would stop her body from having a fever even when she was sick.   

So she started on Actemra and although she has had pain on and off the pattern had broken. We started thinking that the medicine was doing everything that Kineret couldn't do.  6 and a half weeks ago (10 months in to her new treatment) she got her first flare (without the fever). She was tired, grumpy, stopped eating, was complaining of pain in her body, stomach and eyes and started coughing which ended up as a chest infection. Now Almost 7 weeks later she is tired and grumpy, gone off her food and has started coughing again... is it a coincidence or is the disease getting stronger than her medicine again.

I have questions and I get no answers and then the intern who saw us today had absolutely no interest  in listening to what I had to say and I got really pissed off with everything. I wanted to stop Zoe's treatment and never go back to the hospital. Her immune system is so low that she keeps getting sick and I am over it all. I want some assurance that giving this treatment is not harming her more than helping her and that it is doing something good... because right now I am not so sure. I feel sad and annoyed.

Zoe's Routine at the hospital every 2 weeks.

Zoe Battles pain every day. If you have ever broken a bone or torn a ligament you may have an understanding of what she feels. Apart from that her Treatment days are also filled with uncomfortable poking and prodding but she has taken control of that pain by wanting to do everything herself. The medical staff are wonderful with her and they find it cute that a 2 year old would try and do their job.  Willy and I are so proud of her and when we were making this video I was filled with unbelievable pride and of course sadness that she is at ease with all of this. I hope you enjoy the video of our beautiful budding 'Princess Doctor'.

The cold is settling in her bones.

It has been a while since I wrote last. Although this blog is good for me because I get my feelings out, I guess sometimes I just want to pretend that nothing is wrong, that Zoe is as healthy as her big brother and Sister. So I shut myself off and therefore I wasn't writing.

We had a bit of a shock 3 weeks ago... We turned up to Zoe's Ophthalmologist appointment and we were told that the disease has now started in her Eyes. I was never really worried about that even though we knew there was a risk. I have read as much as I can on this illness and the percentage of People (young and old) with Stills which affects their eyes (Uvitus) is almost unheard of.... what I mean to say is that there is like 5% of cases! Ok so there are not many people out there with Systemic JIA and again Zoe's age of diagnosis is also extremely rare but I figured with a percentage like that we really didn't have much to worry about.

Willy on the other hand has been petrified that Zoe will go blind from the beginning. We now know after talking to her specialist that we just need to be very vigilant when it comes to her eyes.. If she says she has pain we take her straight to the hospital, they will then give her cortisone drops and if that doesn't help they will inject cortisone into the eye... and this can save her from going blind.

It is now 3° when we wake up and it takes most of the day for the temperature to reach around 15°. Of course this plays a big part in how much daily pain she endures. Our fire has been out of order because the pipping had holes in it but a new one was installed today, so I will light a fire for her as soon as we get home from Physiotherapy tonight.

It is treatment day tomorrow and with any luck all will go perfectly.
This was an entry just to touch base but I will write more another day. x