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.
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