No, not that s word. One that’s much worse…seizure. When Gage was diagnosed with CMV, we did our fair share of online research to learn more about the disease. The outcomes vary greatly and one thing mentioned as a possibility is seizures. Luckily we got through the first 2 ½ years of Gage’s life without experiencing any seizures. Knowing a few other parents and kids who battle epilepsy, I count 2 ½ years of being seizure free as a huge blessing. But during that time as I read about and got a glimpse of their struggles, I couldn’t shake the nagging feeling in the very back of my mind that I might one day gain an even better understanding of what they go through.
I try not to think about what negative things might happen in the future, because I don’t see the point really. Any number of bad things could happen to any kid and we can’t live our lives in fear of all the what ifs. So if concern about seizures crept into my mind, I’d push it back down and focus on something else. But that nagging feeling was still there, until one day when it was forced to the forefront.
One treatment option for kids with excessive muscle tone like Gage’s is Botox injections, to loosen them up and give them a greater range of motion and hopefully the ability to do more with their hands, arms and legs. It’s something we’ve been discussing with doctors since early on, but delaying until Gage was a little older since it requires anesthesia. After much deliberation, we decided to give it a try. Our original appointment was scheduled in December, but was cancelled because Gage was sick. A change in the plans kind of made me want to call the whole thing off. But we rescheduled in January. At that appointment after being weighed and having his temperature taken, as we waited for the anesthesiologist, Gage began having a seizure. It started very subtly and then increased in intensity. Luckily Gage was surrounded by doctors and nurses who knew just what to do and quickly gave him medicine to get it stopped. I just stood helplessly by, holding my sweet boy’s hand and trying to offer any comfort I could as tears streamed down my cheeks.
It was like Gage wasn’t really there with us. The first indication was not being able to get him to make eye contact with us or respond to his dad’s voice. The jerking and twitching were obviously out of his control and he didn’t even flinch during multiple attempts to start an IV. I’m so glad that Evan was there with me to witness what happened first hand, rather than me retelling him what it was like. The anesthesiologist told us we would get the quickest seizure consult he’s ever seen since Gage’s neurologist was heading over already to administer the Botox. He also assured us that this was his area of expertise. The neurologist arrived shortly after that and talked us through a lot of different things, prescribed a rescue medication and planned to follow up with an EEG and MRI. It also gave us the chance to discuss Botox with him in more detail. If Gage having a cold made me want to forget about it after our original appointment, you can imagine that a seizure during the second attempt really made me want to just scoop him up and run away. But oddly, our conversation that day ended up having the opposite affect, reassuring me that it’s a treatment option worth pursuing.
Now we’re in the midst of trying to learn more. Gage had an EEG that did 
show some abnormalities, and an MRI that showed some expected changes for someone with his condition, but nothing getting progressively worse. I expect to learn more at our next neurologist appointment in July. We’re weighing the options of starting preventative medication versus relying only on the rescue meds. It’s so hard to know whether or not you’re making the right choices for your child sometimes and that process can be extremely frustrating. Luckily, since that original incident, Gage has not had another seizure. But the same nagging feeling that first had me worried about the possibility is now whispering “what if it happens again?”
Since that day, Gage has been his normal self, and I guess you could say that things really haven’t changed much other than taking his medicine with us wherever we go. But fear is such a powerful emotion that can take a huge toll. Even with just one, isolated (so far) seizure, I’m now more concerned about leaving Gage in other’s care and have questioned whether or not he should still be going to daycare. I hate that I’ve let my fear have that effect on me. I know that going to school is good for Gage and that having a date night and some quality time with my husband is beneficial. So I’m bothered by the fact that I second guess my decisions to do those things. I just have to remind myself how pointless it is to worry about what bad things could happen and know that no matter who is caring for Gage, his life is ultimately in God’s hands. I couldn’t ask for a better caregiver than that.
“Fear not for I am with you. I am your God, I will strengthen you. I will help you. I will uphold you with my righteous right hand.” Isaiah 41:10