Big updates, brain surgery.

I haven't updated this blog since 2023, and revisiting the posts evokes a mix of emotions. I feel sad because, back then, there was still a glimmer of hope in my writing and my expectations for the future. At the same time, I'm incredibly proud of Jordan and all he has achieved while continuing to grow over the past two years.

Unfortunately, Jordan's epileptic spasms (we've moved on from infantile spasms) continue to cause significant damage to his brain. He's developed drop-like serizures that have been very dangerous and limited his independence and overall quality of life. Every medication we've tried or increased since leaving Cincinnati Children's Hospital has failed. We returned to Oishei last year after the initial aggressive treatment approach in Cincinnati lost its momentum. We had remained in contact with his local neurologist, so when we met with him again, he asked, "What would you like from me?" We explained everything and shared our frustration with feeling stagnant once more. The timing was just right, as our local neurologist was attending conferences and learning more about epilepsy surgeries. Matt and I were excited that new developments were occurring in Buffalo, even though they weren't new in other parts of the country. His neurologist took charge again and sent us for new tests, which led us to the Cleveland Clinic for a MEG. Unsurprisingly, it didn't provide substantial information, as Jordan still showed activity throughout his brain.

This brief overview of the past year brings us to our current situation. Matt and I have decided that the best option for Jordan is a Corpus Callosotomy. This procedure involves brain surgery to sever Jordan's corpus callosum, disrupting the main connection between his two hemispheres. We recently consulted with a new neurosurgeon, who is relatively new to both neurosurgery and Buffalo, about this procedure. I understand that a new surgeon might cause concern, but this doctor was exceptional. He was confident, clear, and explained everything to us in detail. I was already familiar with a corpus callosotomy from discussions with families across the country, which was helpful when meeting our surgeon. He said all the right things and was confident in his ability to perform this safely on Jordan.

Both Jordan's neurologist and pediatrician were impressed with this neurosurgeon and what he has to offer. Part of me feels there must be some sort of divine intervention at play because finding this specialist in Buffalo, right when we needed him, is truly remarkable. I'm just grateful for this opportunity. However, I'm not putting all my hopes on this. A corpus callosotomy might work, might partially work, or might not work at all. They will approach Jordan's treatment in stages because, with the available laser technology, they can perform the procedure without a craniotomy. This will allow for a better recovery with fewer risks.

Currently, we do not have a scheduled date for the surgery, but it will probably occur in July or August. We need to complete some tests beforehand. We simply ask for your ongoing thoughts and prayers as we move forward with this next step.

We are incredibly thankful to those who are attending or supporting our golf tournament this year. Every dollar goes to children diagnosed with this relentless form of epilepsy.