***Update - Grant has two genetic mutations (CACNA1A, PRRT2) but the pathogenicity of these genes are unclear. However, the epilepsy, delays, and behaviors he has are explained within these gene summaries. Cody and I will be tested to determine if these genes came from one or both of us, or if they are de novo, meaning specific to Grant. Grant had an MRI on August 18th. No tumor was found, but it was abnormal. His corpus callosum is small and hippocampus is small and sclerotic, which is congruent with his clinical presentation. The neurologist keeps saying it’s good news he’s still able to learn new things and that he hasn’t had another seizure. Still no concrete answers though. It’s a lot to process… after Cody and I test our genetics, if it comes back that we DO have the genes found on Grant’s test but since we aren’t affected by them, it would mean that something else is causing Grant’s condition which would necessitate more elaborate genetic tests for him. We are being referred to a neurogenetic specialist and we’ll need to do another MRI when he’s about 3.

We’re sad, and always initially get knocked down when we get new, not great news, but we remain very hopeful. We know God has his hands on Grant, and that’s why, despite everything he has going against him, he still hasn’t had another seizure and he’s able to learn (albeit slowly). The doctor that’ll be performing Grant’s intensive therapy next week seems excited and hopeful for great outcomes.

Sharing our struggles has been incredibly vulnerable, but also healing. The amount of love, support, and prayers we have received has been overwhelming in the best way. Cody and I remain dedicated to getting Grant all the help he needs to develop and heal his brain. Since his seizure, Grant has been on twice daily Keppra, which has helped quiet the noise in his brain so he can begin to thrive. His personality has really started to shine, his energy levels have increased, and he's learned some new skills. We still have so so much to work on, but praise God.

Thank you all for your comments, prayers, donations, love, and taking the time to read our story. Check back here for updates***

On June 18th, our baby boy Grant suffered an intense 20 minute long seizure. It was completely out of the blue, and a total shock that resulted in an ambulance ride and 3 day hospital stay. The diagnosis was a severe form of epilepsy with a prognosis known to be detrimental to his development and health. While we wait for further testing, we’re deep in constant prayer, believing in healing and a miracle.

While he’s a happy, smart kid, his brain activity slows his development down significantly. Everyday we have to work with him to move his arms and legs, practice balance, and teach him how to communicate, all in effort to get him caught up on things that come naturally for most kids. Through our research and many phone calls and evaluations, ranging from world renown neuro developmental centers, to state guided programs, we believe we’ve been led to get Grant into an intensive 5 day program that will help breakdown developmental blocks and get him on the path to growth. In short, he has baby instincts or “ retained primitive reflexes" that need to be broken down in order for his mind to coordinate his body and actions. This type of therapy has even secondarily shown a decrease seizure activity. Our ultimate goal is to get Grant caught up in his development so he can grow to be a regular functioning child.

Therapy like this isn’t covered by insurance and is very expensive. With Cody as a freelancer and myself a stay at home mom, we’re having to dip into savings to provide this for our boy. Cody is applying for an Art grant that will pay him to paint a mural in Austin. With baby #2 due to join the family in just 5 weeks, this is all an incredibly busy and important time for us. We’re reaching out to our closest loved ones to share Grant’s story and ask for prayers of support. We absolutely don’t expect anything, but if you feel led to contribute to help lessen our financial load (ambulance/ER/hospital bills, therapies, continued specialist care, medications), we would so deeply appreciate any dollar we are blessed with. It has been an overwhelming time, both emotionally and financially, but we believe God is working behind the scenes. Thank you for taking the time to read Grant’s story.