Saying goodbye

This will be my last post for 2011. Thank God this year is over and thank god our love for each other as a family is strong! It was a difficult year for all of us. Willy and I have experienced hurdles in our 10 year Marriage but this year we've experienced MOUNTAINS and I am happy to say we have survived. Paul and Mia faced difficulties adjusting to their baby sister having a chronic illness and the absence of my time with them of which I had to give to Zoe but they have also survived. Zoe's challenges will continue but she lives her life to the fullest and although she complained of leg and feet pain today, not once did she stop and give into that pain. She is our hero and the core of our strength. Goodbye 2011, I hope we never live another year like we have this one and if we do I hope that we have learned to cope a lot better, with more strength, communication, support and love for one another. I pray for a cure, I pray that the medicine Zoe and other children take fighting this disease will not cause other illnesses. I hope next year will fulfil all our dreams and bring health and happiness to all.
Now 2011, bugger the hell off and let the year of the dragon begin!

Happy New Year 2012!

Sleepless nights.

It has been a while since I have written in the blog. I guess I have needed a little time for everything in me to settle down. I don't know which way is up or which way is down at the moment.

For the passed 12 months, Zoe has had 6 eye exams. She was only meant to have 4 (1 every 3 months) but we took her 2 times on an emergency visit because she had pain in her eyes. For the first 2 Eye exams there was no sign of inflammation in her eyes, however for the 3rd they notices small amounts of "old inflammation" (She had had a flare up 15 days prior to that appointment).

3 Weeks ago Zoe started complaining of sore eyes again, so we took her to the hospital and they did a quick check for inflammation and we were happy to find out that there wasn't any. So we wanted to know why she had pain and they asked us to come back the following week for a thorough check up. Off we went with drops to put in her eyes for 7 days to open up her irises. Last week we took her back and low and behold her Vision is not good at all. They have a scale here in France from 0 - 5.
0 being 20/20 vision and 5 being highly vision impaired to legally blind. We were told Zoe is at 3.

Now we are wondering how this could have been missed during the last 5 exams? Was she born this way? Is it the disease (We know her eyesight can be greatly affected)? Did the resident do her job properly the first 4 times? (The 5th and 6th was a different resident) Or worst of all could it be a side effect of her treatment?

There is not enough information out there on this drug to know what kind of side effect may arise. Zoe was only 19 months old when she started this drug, when normally she should have been over 2 years of age. We should have asked more questions, done more research but we were desperate for her to be out of pain. Admittedly we were not given other options besides, operations and going from 1 needle of Kineret a day to 2, when she was already having horrible side effects from that.

I hope that Zoe's loss of vision is not due to the medicine because then we will have a very difficult decision to make.

We have asked for a second opinion  and we are now just waiting to hear from the Ophthalmologist in Paris in the hopes that we can get an appointment relatively quickly. I will write more when I have more info. 

Thankful for treatment

Today I am thankful for Zoe's treatment. Although there are negative aspects to an immuno-suppressant drug it has been proven to me this week that Zoe NEEDS her dose every 2 weeks without delay! She spends a day in hospital every second Tuesday.
The hospital forgot to order the Meds last fortnight and didn't realize until the day before Zoe was to to go in for her infusion. Therefore her appointment was cancelled and it became a waiting game for the Lab to contact the hospital saying when the medication would be ready.
Luckily for us it only took 4 days. Zoe had been in pain from the Friday before she was due for her treatment. It was a long week and a half, with Zoe crying every day.
Her knee started to swell on Wednesday, which is obviously why she was crying and walking a little funny.
On a positive note the Dr was able to see that her knee was swollen, which is not always the case! A lot of the time it is us telling the Dr what we see but them not actually seeing it for themselves, so this time I know it was taken into consideration.
Today Zoe seems happier. Her knee is still inflamed and she has started to cough again but she has stopped crying and I can rest a little. ;°)

5 days and no pain :)

Ok This will be short and sweet. I am very happy to say that Zoe has had 5 days in a row where she has not complained of pain! She went to Hydrotherapy yesterday and worked very well and had a lot of fun.
She hasn't eaten very much today and she slept 4 hours for her nap this afternoon.... but I think she is just very tired from Hydro yesterday.
I have put a Humidifier in her bedroom to help her lungs a little and she is still taking cortisone for her lungs also. She will finish the course of cortisone in 2 days and I hope that her lungs can have a break before getting another infection.
I hope I don't Jinx her by writing this but I can tell you that it has been a much needed stress relief for me, to not have her in constant pain. :D
Fingers crossed next week continues this way.
xx

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