When does something new become something “normal?”

New trends soon become the “norm”, new music becomes old, the “new” iPhone will be outdated in a year, some things become “old” lose value and slowly fade away. Some of us get comfortable in the past and want to stay there, and some of us are right in the mix of things, changing wardrobes weekly with the newest style. I still wear clothes I wore in high school! Outdated? Yes maybe but I think they are comfortable and I still fit them so why not right? My old is still my normal, when it comes to some things. Things come, go, stick around and change, we adapt to the change and we move along with them. There are few things that never get old. On Monday Colbey Raye had 4 seizures, yesterday she had one and so far today she has had one. These seizures never get old, they never become normal and the experience never feels comfortable. It could last 20 seconds or 20 minutes and the feeling is the same. We are always somewhat expecting them to reappear, and we hold our breath through each cold, flu, virus, anything that can trigger the appearance of a seizure. And when they come they are always scary, always uncomfortable and never normal. Monday ended her longest streak of seizure freedom, it lasted 36 days! And an amazing 36 days it had been! She has learned so many new things in the past month, her progress has amazed both her PT and OT therapists, as well as her mommy and daddy! She is trying to fight off a stomach bug, the probable cause for her seizures breaking through, and her doctors are very hopeful that with a little extra medication and time she will return to her seizure free state and go another 30+ days without any more seizures. We are really hoping this is the case and these “mild” seizures aren’t the start of past trends.
This morning we had Colbey Raye’s second post op visit with Dr. Ojemann. He was very happy to see her using her right arm more than she had been before and was thrilled she had gone so many days without a seizure. He is not to concerned about the past few days of seizures as long as the subside when she is feeling better. For now things will stay the same, and we will continue to have regular follow ups with neurology, and neurosurgery.
Last week Colbey Raye saw ophthalmology and we learned that her sight is in the normal range, this is good! We also learned that she does have a vision deficit, after about 45 degrees off to the right Colbey Raye looses sight of objects in her peripheral visual field. This was expected, but it will take some time before the doctors will be able to fully map out what her vision impairment entails. We have a follow up
In a few months and will know more then.
We are enjoying this time so much, Colbey Raye has the best little personality and can bring a smile to anyones day!! She’s a little spunky, busy, giggly joy and I can’t even begin to explain how happy she makes all of us! Austyn Jayne is in love with her and always has to kiss her as soon as we walk in the door after appointments. Sweetest big sister! Soaking it all up 🙂


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