December 10, 2018

Could I Order a Seizure Salad?

In Life with a Side of Special, there is always a base layer of stress, angst and anxiety - caused by one thing or another.  Sometimes I feel frustrated that our moments of joy are never without the co-existence of a little knot of sick in my stomach.  I was trying to describe it to someone the other day.  The best physical description I could give it is like swallowing a burning hot marble -- and always feeling that hot marble rolling around in your gut.  There is a rare moment that I can get so busy that I can forget that it's there - but almost always, that hot marble ensures a constant awareness that not all is well.

One extra layer of angst this week has been an increase in seizures for Bridger.  The school called on Monday reporting some convulsive seizing, then called again later that day to report more.  I brought him home to observe him.  By Friday we had 2 pages full of noted seizures.  I cancelled my plans for Wednesday and took B for an EEG, which I try to convince both he and I that it is indeed a fun date by having lunch together after.  If his EEG could read perseverations in his brain it would have shown that all he could talk about during the test was what Wreck-It Ralph car he would get in his Happy Meal.

There was a hair salon next to McDonald's, so I applauded my bold move to take him to Great Clips after lunch and let the stylist scrub all the EEG goop out of his hair and give him a haircut at the same time.  That stuff takes forever to get out so I was smiling all the way home from his appointment. {simple joys}

Whenever we have a health *bump* -- even one that will resolve itself in time, it means opening Pandora's box to a few extra doctor's appointments/tests, a few more days home from school, a change in medication - which means some negative behavioral changes while he adjusts to the new dose, and a few more insurance phone calls.  Always extra time for that in December, right?

So if I seem distracted at times, please forgive me.  I am thinking about that hot marble I swallowed and the seizure salad I am being served this week, that I didn't order.