Many of you have heard Jade and I discussing the health of our son Ezra over the past couple of years related to his epilepsy. During our time here in the States we have been consulting with Riley Children’s Hospital to assess the problem and identify a plan. We have been working with a neurologist at Riley to find a medication that would reduce Ezra's seizures as much as possible. We’ve recently been told that after trying four medications, our chance of success in this route is below 5%. As a result, Riley has recommended brain surgery. The word “brain surgery” has been a difficult concept for our family to deal with. Although we don’t have all the answers, Jade and I felt the time has come to share what we know so far.
Ezra’s left temporal lobe is the area causing his seizures. This week we have been at Riley for a 3-day EEG to help them further identify the area causing his seizures. We found out that Ezra is constantly having seizures that we cannot see. He has them all day long and even in his sleep. We only see the outward manifestation of his seizures 1-2 times a week. The results of that EEG show that Ezra will have a 85% chance of being seizure free with brain surgery. On August 2nd, after a few more tests, Ezra will undergo a procedure called a ‘temporal lobectomy’. During this procedure Dr. Smith will remove about 5cm of his temporal lobe. Ezra will be in the hospital for a couple days after the surgery but should then be allowed to return home. Following the surgery, Ezra will need 4-6 weeks to completely heal before the neurosurgeon will clear him to travel. Both Ezra’s neurologists and his surgeon are incredibly supportive of us moving back to Uganda. We are thankful for such a quality experience with these doctors so far.
As you may have noticed, the scheduling of these procedures and recovery time will impact our previous schedule in returning to Uganda. We were planning to leave July 19th but the plan must change. We are moving our departure date to the end of September.
Right now our lives feel chaotic but even in the shifting and fluctuating we recognize that there are important truths that remain. First, God isn’t nervous about any of this. Please pray that our family will lean in together to the faithful love of God as He cares for us in this time. Second, we’re still called to Uganda. When the plan gets changed our whole family, including Ezra, felt that nothing had changed in our call to Uganda. The calendar might look different but the call does not. Third, we aren’t alone. So many have expressed love and support in ways that we truly appreciate. Your friendships and prayer are a huge boost to us all. Thank you for your encouragement and support!