We know everyone is on the edge of their seats waiting for the big update. We don’t label this as good news exactly, but we do feel we have new insight thanks to some creative investigating by the specialist at Lurie Children’s.
Seems we may have found physical proof of the culprit causing Reese’s seizures. Our doctors have always contended there could be a blemish on her brain but they couldn’t see it, and wanted to wait until she was closer to 2 years old to check again with another MRI.
Guidance from this new doctor says we don’t have to wait. His fancy 3D machines and his experience enabled him to see a cortical displasia crossing horizontally from her left occipital to her left temporal lobe. The area right above the ear.
We spent an hour asking him questions and understanding what next steps could be. He praised the level of detail from our dr and all the ruling out we have gone through. He also felt overall Reese looked in great condition outside of her little brain. We have some recommendations and guidance from him we will now discuss with our primary epileptologist and go from there.
Coming up here, we worried he hadn’t looked too closely at her case, we are now really encouraged by his level of interest. We were concerned they wouldn’t take the case seriously, definitely not the issue. So while our road is far from over, we now feel we have done the right things to date and we can make a more informed decision for her next step.
The emotional side hasn’t kicked in yet. I realize this sounds very clinical, but we both live on the facts and the science. And the brain really is fascinating. So please know we are still processing and we have lots of research to do. We CAN say if it comes to surgery there is a good chance we will head back to Chicago based on how impressive the experience was.
We feel so loved from everyone’s support. Please don’t stop. It’s those unexpected moments when someone reaches out that really push us through. And we plan to thank you each of you some day, some how.
Our sweet girl loves everyone she meets and I know she is a feisty survivor who is going to make the most of this. And when we have passed through to the other side of this challenge you can bet we are going to do all we can to educate and advocate for more research and awareness. It’s the least we can do.
Oh and I apparently have strep. I am deeply sorry to everyone I may have exposed. I had no idea!
So that’s the short recap of our 3 days in Chicago and I am sure there is more to come.
OK With Change 