I wish I could give you all a firm answer as to what is happening with Waverly. I wish we knew for sure. There is still hope that this could simply be seizure medication related and we just need to find the right med. However given so many new symptoms and changes we have seen over the last few days and weeks, we are faced with the sobering reality that this is disease progression. And she is most definitely in pain, which is the absolute worst part of this entire process.
We have known for over 7 years that Sanfilippo Syndrome would one day take her life, as well as Oliver's. We have lived in slow moving disaster mode for years. We have grieved the loss of hope, we have adjusted to new normals along the journey.
I am conflicted as to how to *feel*, as if there is a right way. I need to just allow my emotions to lead me and be honest with the now.
Thank you for all of the love you have shown our family.