Future Blurred...

Well I have had a few days to sit and reflect on Zoe's 2 hospital appointments in Paris on the 17th of January 2012. Although we didn't get bad news and well quite honestly compared to what we were thinking the outcome would be, it was actually pretty good news. I am still feeling like I hit a wall at 100k/h. I feel bruised and sore all over my soul and for this I feel really stupid. Why should I feel so low when the information we got was better than the alternative?

The minute we walked out of the hospital I felt like I had a big black blanket of fatigue drape over me and it is still trying to tie knots around my ankles so as I would lie down and never get back up. It is good to know that I can kick Butt when I need to, even if it is my own.

So now I am up and ready to tell this next part of Zoe's up hill climb.

In my last post I was saying how we found out her eye sight was very bad and that we couldn't understand how that could be. Being tested every 3 months or so for the past year and never being told of a problem we were shocked to find how big of a problem it actually was.

So we made an appointment for a second opinion in Paris. At this stage we were not sure if it was her illness, the treatment or both that was causing her vision loss or if it was luck of the draw and she was born with very bad eyesight. Since she had been tested so often and nothing had been said to us we figured it was impossible for it to be the fact that she was born like that.

Willy and I started discussing our options as to if it was her treatment causing it. We have had it pointed out to us before from her Specialist that Actemra will be her best chance as she had already failed the other treatments available to her. So if this was taking our baby's sight but giving her back the possibility to walk, run, and play with Paul and Mia and taking away around 65% of her daily pain what would we choose to do? Take away her treatment which would evidently confine her to a wheelchair and leave her in extreme pain or continue the treatment and try and show her as many beautiful things and colours  as we can with the probability of her going completely blind in the future.

Imagine looking at your child and making a choice like that! We made ours and it was so hard but luckily the results we were given a few days ago means that we do not have to put that choice into motion!!! It has been said that it isn't her treatment causing the vision loss but it was in fact missed in all of her other eye exams over the passed year. I still have no idea how such a mistake could be made with the extent of her problem.

The Ophthalmologist in Paris said that she thinks we need to have someone with a lot of experience looking at Zoe every 3 months because not only did they miss this and cause us extra stress and unnecessary worry but they have also been giving us the wrong information, in which, if we had listed to them we may have potentially put Zoe's sight in danger!

I know now that going with our 'gut' when it didn't feel right and seeking out a second opinion was the best thing we could have done. Zoe still has a disability with her vision but it is not being caused by side effects or Actemra and for that we are so very grateful.

As for her illness, Actemra is doing it's job. Her upper stomach pain that she is getting could possibly be a Pericardia which is inflammation around the heart. She had extra blood work done and she will also get a cardiogram done. Her specialist is happy with her range of motion in most of her limbs but is not happy about upping her pain medication because that will cause additional problems, he said that she will get use to her pain and that there is nothing anyone can do to exclude it completely. We can help her by giving her warm baths more often, heat her clothes in the morning and put wheat-packs in her bed to help her sleep.

As of next week we will be upping her medication (Actemra) to see if that will reduce some swelling behind her knee's and her hips. The good thing is she has put on 3 kilo's in 17 months!!! I know that doesn't sound like much but it is huge for Zoe! This disease can cause a form of Anorexia as well as many other things. She has also grown 6cm in 17 months. So with that I will leave on a positive note and a smile :) I am proud of my baby girl and of course of Paul and Mia for their strength and love.

I thought I'd add a poem also.

I Still would have chosen you - By Terri Banish


If Before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you.

If God had told me, "this soul would one day need extra care and needs", I still would have chosen you.

If he had told me, "this soul may make your heart bleed", I still would have chosen you.

If he had told me, "This soul would make you question the depth of your faith", I still would have chosen you.

If he had told me, "This soul would make tears flow from your eyes that could fill a river", I still would have chosen you.

If he had told me, "This soul may one day make you witness overbearing suffering", I still would have chosen you.

If he had told me, "All that you know to be normal would be drastically changed", I still would have chosen you.

Of course, even though I would have chosen you, I know it was God who chose me for you.

7th of January 2012

The first 5 days of January were fantastic. I had a whole new energy around me, I felt like I could take on the world. I still feel like that most of the time but the last 2 days have been getting harder for Zoe.

Thursday Zoe started getting irritable again. She has started going off her food and she has wet her pants twice and wet the bed once.

I had noticed a pattern a few blogs back. She has her treatment on the Tuesday, Wednesday she has an upset tummy (loose stools), Thursday she seems stronger, happier. She is fine by Friday, Saturday, Sunday, Monday, Tuesday and by Wednesday there is a decrease in appetite, then Thursday she is irritable, tired and clingy. 

So if I go by this pattern it means that Zoe has One whole week of feeling "good". She still has the daily pain but she deals with it. I noticed also the last time she was like this she also wet the bed and her pants. I guess I had never noticed before because she had nappies. I know it is normal for kids her age to have accidents but she doesn't do it without the other symptoms. Coincidence or effect?   I guess this is another thing to talk with her specialist about. 

We had a meeting with a lady from the Government agency who help Physically handicap people. We are discussing a Paediatric Pram instead of a wheelchair, that will be suitable and adjusted to Zoe and her needs. A normal pram keeps the spine in a cocoon shape, the feet rest is too far down for it to be useful for Zoe and there are no arm rests. Therefore she is sitting with her legs dangling down and when she has swollen knees or ankles they will throb and cause more pain. So her body is not able to rest as much as she needs. Her legs need to be elevated a little and her arms need to rest on something also. Seat and Back need to be firm but comfortable.   So we are in the throws of getting this sorted out.

Apart from that we have also been given the appointment at the Ophthalmologist in Paris (for a second opinion)   which will be just before her appointment with her specialist. Needless to say Willy and I are very relieved.  

It is treatment day in 3 days and I know she will feel better next week. She also started back at pre-school after 6 weeks off. I had one morning all to myself. It was amazing to do Nothing at all :°)

I will write again after the 17th, when we have seen her specialist.