James' Journey with TSC

It’s so wild to us that July has almost come and gone! Since our last update, so much has happened for the Maxey family; we moved, James’ grandparents from India came to visit, he had ophthalmology and dermatology appointments, James continues to charm everyone he meets, and more.

Both of James’ specialist appointments with the dermatologist and ophthalmologist went wonderfully! He has no new concerns with his skin or eyes, and will just continue to be monitored over the course of his life for any changes. We are so grateful that he is doing well in that regard.

Shortly after we moved into our new home, we noticed some odd eye movement. Now, for those of you who know James, “odd eye movement” typically means that something is not working well in his brain, but this didn’t look like any of his seizure activity that we are familiar with. As a precaution, we took a video and sent it to his neurology team. They agreed that it is most likely a side effect of his new medication called downbeat nystagmus which is where the eyes can move up before they “flicker” back down. However, to be on the safe side they ordered another EEG and an MRI to make sure there wasn’t any changes on the brain side of things.

We are now on very familiar terms with our EEG tech in Bozeman, and James did the best he’s ever done for his eighth EEG. He was tired but not grumpy prior to the test, and woke up from his nap all smiles. We were also pleased to learn that while the EEG is still abnormal (and likely will never be normal due to his tubers) there was no changes that would suggest anything was concerning.

That just left the MRI to confirm things. We scheduled it for mid July, but unfortunately James came down with a cold and oh-so-lovingly shared it with both of us, forcing it to be postponed by a week. Because of his age, he has to undergo general anesthesia for any MRIs. This led to a week of medication adjustments and an early wake up time so he could be the first child to be seen. His grandma came to help and we arrived at the hospital. However the anesthesiologist for the day was concerned that we needed to wait even longer since James had just recovered from his cold, so it is now rescheduled for late August. It is ironically scheduled now for almost exactly one year to the day after his first MRI and his initial diagnosis.

We also get the privilege of traveling to Denver, Colorado, for the TSC World Conference to learn more about research being done for TSC, as well as a chance to meet other families who deal with this diagnosis and spend time with some close family friends. We are both excited and admittedly a little nervous to attend, but are praying the Lord uses it as an encouragement for us and that we are able to establish even more of a community.

Please be praying that James stays healthy so we can proceed with his MRI as planned, and as always, that he gets the rest he (and we) so need. He is a bright spot for us in all of this and we are so happy that he is progressing well and getting so grown up. Thank you all again for praying for our family.