Getting information has been crucial. Of course, there is too much and yet somehow not enough available online. It was comforting for me to find another blog detailing the family experience with this condition. It made me feel like we weren't alone--which is exactly why I wanted to put our story here. I hope that we will be able to give others hope and perspective.
After a long day traveling to see the specialist, we came home and tried to do something normal. We were baking cookies and making a new recipe for dinner when, while snitching cookie dough, my Sweet Girl brought up her fears for the anesthesia she needs for her MRI. As I tried to reassure her, I realized life just wouldn't be normal for a while.
Embrace the camera today, guys. Get your little ones and hold them tight.