Today marks 4 months since Colbey Raye’s functional left hemispherectomy! How to sum up my feelings in one word? Amazed. Just four months ago Colbey Raye was having daily seizures, she did not understand much of anything we said to her, she was nonverbal, sleepy, and her communication abilities were pretty much non existent. Today, 4 months later my little sweet innocent seizure baby is almost 4 months seizure free! She communicates by signing and with a few words and verbal cues! She understands what I am telling her (simple commands), she plays peek-a-boo, and today she was holding my cell phone by her face and said “ha”. She no longer needs a set scheduled, napping multiple times a day, and can be happy and content with just 2 naps most days. Her stamina has doubled and she can now last through an entire PT session without shutting down after 15-20 minutes! She is still sleepier and runs out of steam faster than most her age due to medications, but she is no longer worn out all the time due to seizures. Amazed! Amazed that my sweet 17month old has progressed so well cognitively with just half of her brain. Amazed by the determination and courage my baby girl has shown through all of this. Just purely amazed.
Every day I am thankful for seizure freedom. I pray that her seizure days are over forever, and we are so blessed by every day that is free of seizures. But, there is always a but right? I still jump and the sight of something “off” and Josh does too. Last night Colbey Raye sneezed and I was just trying to get her to look in my direction so I could see if her nose was snot covered and just with the tone of my voice Josh jumped and looked at Colbey Raye. Fear? Yes, it’s there, it’s real and it is a constant battle. My tone, Josh’s tone, a moment of zoning by Colbey Raye can send us into a small state of worry. Colbey has had a bad cold the last few days, 4 months ago she most likely would have been hospitalized due to severe seizures caused by the cold. I am amazed still that she’s made it through the worst of the cold and no seizures! But Still, whenever Colbey Raye is sick my worry is heightened. In the middle of the night last night Colbey Raye woke up, she was kicking her legs and her right arm was even stretching out, I panicked a little and stared at the monitor for a few minutes, she was pushing on her head, she started turning a little, grabbing her feet and searching for her bink, she let out a big yawn, finally found her binky and went back to sleep. Maybe a head ache? And a stretch, is all it was, but I hardly slept again the rest of the night. Why? Because even though it was not a seizure, the fear still sits deep down, and when that fear is resurfaced you relive all those sleepless nights, all those real seizures, all those moments turning to look over your shoulder every 30 seconds to make sure the baby is okay. I am amazed that the memories are now what haunt me, and not the frequent visits from seizures. I’m amazed but the strength and support that surrounds our growing family, and am amazed by the miracles God has worked in all our lives. Miracles do happen, and I’ve witnessed more in the last 16 months than ever before!