I started this journey singing God's praises, it seems only fit I enter the next phase singing God's praises. Let's start by praising Him for taking the pain from Brie's leg, allowing her to walk again. Next let's praise Him for stopping the sensory seizures in her thumb, hand and face. Finally let's praise Him for keeping me sane during this whole ordeal.
I would be lying if I didn't say I wasn't scared, in fact it was that adrenaline that kept me persistently seeking answers. And we believe to have an answer or two. It is believed we are dealing with two separate issues, occurring at the same time. First that she was having a sensory seizure in the thumb, hand and face as a result of her Sturge-Weber which is consistent with her EEG and the placement of her brain involvement. After digging into some research the Sturge-Weber Foundation published Robert and I believe the onset of these seizures were caused by the four vaccines she received seven days prior to the start of her seizures. However, we have no proof of this--just a gut feeling!
Secondly, her leg pain was actually cause by an infection completely separate from the SW, which is consistent with blood work and the fact the pain jumped around. The antibiotic seems to be helping, she was definitely making up for lost play time today! Praise God for antibiotics!
With answers in front of us it's onto the next step in the journey--Educating ourselves so that we can be our child's best advocate. First up a return visit to the neurologist, followed by a trip to Orlando, FL for the Sturge-Weber International Conference and then an appointment at the Sturge-Weber Center of Excellence in Houston. I fear the journey has just begun, but I do not fear the journey itself. God is in control, God has a plan for Brie and I pray through her God would be glorified.
Thank you friends for you prayers, phone calls and comments I am over-whelmed by your love and kindness