Since we set up Will's epilepsy surgery consultation at Johns Hopkins back in December, I feel like we've inadvertently pressed the pause button on life. I am a die-hard planner at heart, but have held off planning much of anything in anticipation of this appointment. We don't have anything on the calendar beyond Easter at this moment, and even that I am a bit nervous about.
We have no idea what the next couple of months will bring. We don't take vacation days from work because we don't know how many we'll need if Will has surgery. There are just too many unknowns at this time. This certainly isn't the way that we enjoy being... I hope no one things that we've been anti-social! We just have no idea what is in store for us and that makes it hard to think about much else.
Hopefully that unknown situation changes a bit this week. We finally have our consultation appointment at the Hopkins Epilepsy Clinic. They have all of Will's medical history, the clinic notes from the NICU and his neurologist, the surgery notes from his last shunt revision, all the information on his progression of seizures over the past 2 years, and every x-ray, CT and MRI he has ever had done. We have a 90 minute consultation during which time we hope to receive clarity and a plan.
I'll update again once we have the appointment... please keep Will, our family and his doctors in your thoughts and prayers today!