Update from Blaze's study...

As I mentioned, Blaze spent this week at CHOA going through more testing for surgery. When you are facing a surgery of this magnitude it's not an easy decision. When other organs mess up, you can often replace them with a donor organ, but a brain can't be replaced and the brain controls every single thing in your body. When a doctor is considering removing parts of your brain it is very risky. Some parts can be removed but some can't. Every part of your brain has a purpose. The doctor's job is to study the child over several months to get to know the child well and to pinpoint the exact problem areas. They have to study those areas and how the child uses them.  Then decide if the gains are worth the risk of loss.

As of right now, most of the testing is leaning toward the left side of Blaze's brain. The temporal lobe, amygdala, and hippocampus areas. Those seem to be our problem. The lesion that they are concerned about is also in that area. As we go through the different steps they will be looking to see if each test agrees with the others. Once the tests are all complete then we will set down as a team and discuss the types of surgeries and decide if it's safe to go forward (They did tell me that they are leaning toward a resection). Even if CHOAs team decides that they are comfortable with going forward with surgery, they can't.  They have to send Blaze's study to Emory to be reviewed  by their team...that's how the process works. If Emory decides that they agree with CHOA, then it will bounce back and we will go forward with the surgery at that time. Yes, it's a lengthy process with many admissions, but I'm thankful for that. I'm glad that they don't just jump in and make a quick decision. It's a long drawn out process but that makes it safer for Blaze. That helps me as his mom to know that they are going to great lengths to make the best and safest decision possible for him.

Here are the tests so far..

Short EEG- complete
3 day EEG- complete
MRI- complete
CT scan- complete
2nd- 3 day EEG- complete
Neurodevelopmental study- complete

Next tests...

2nd MRI
Genetic panel
PET scan
5 day admission with
SPECT scan



There could be more or less tests but so far this is what we have. As I mentioned it can take months to get these tests done. The SEEG has a waiting list because CHOA only does 1 kid a week.