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Tuesday, December 2, 2014

Not Knowing...

I'm up early, the only time I really seem to enjoy writing. A cup of coffee in hand, my mind fresh and clear from sleep the night before. The house is quiet, just the sound of my husband, he's sleeping hard and I can hear his breathing, heavy and loud, along with the hum of lights and the refrigerator. I woke and thought about going back to sleep, but I've craved writing for weeks and just haven't taken the time to do it. Another holiday passed, another Birthday coming, Teale will be sixteen next Tuesday. She has been tough and we've been struggling with "what" this is for weeks. Recently we've been seeing staring spells, where she won't come back to us easily and we are now questioning if this is new seizures. The weekend was especially difficult with her moods controlling us all. Five days off from school is a recipe for disaster in itself with Teale, but something is different. Mark and I are trained well by Teale and her doctors to be constantly observing her. We watch for changes in her moods and in her physical abilities, knowing we are her only advocates and if something changes, she needs us to help her. Even our son, who is in college, but living home, has seen the staring spells that seem to accompany the recent behavior outbursts. Seizures have been part of Teale's entire life, they started in the NICU and have haunted us on and off since. Is she experiencing a new seizure that is interrupting her brain activity and for lack of a better term, then scrambling her thoughts and making her feel confused and off? This could easily be the cause of behavior outbursts. We don't know, we just know she has not been well for weeks now. Outbursts have been more frequent again, sleep has been quite often interrupted. We've heard her up at odd hours, wandering, getting drinks and looking at her American Girl catalogues or watching her iPad. Teale's bi-polar disease can do this to her too and obviously, lack of good sleep can cause a person to be fatigued and crabby. But then again, lack of good sleep can also be the cause of seizures, it is how doctors "see" seizures in a controlled setting. We've done several seizure studies with Teale, fifteen feet of cord attached to her head and an EEG reading her brain waves. It is a necessary test for Teale to see the invisible to the naked eye issues going on inside her complicated brain. Her neurologist can't tell us much without this test, but it is not a test done quickly or easily. She's been hospitalized a few times for long term EEG monitoring, two plus weeks, attached to fifteen feet of cord in a hospital room. To say it is not fun is an understatement. One of us must be with her 24 hours a day and keeping her happy with no activity is tough. In long term monitoring, the doctors lower seizure medications and limit sleep. Denying the body REM sleep brings out seizures in a person who is Epileptic. To be able to "see" seizures on the EEG gives doctors more information as to what they are dealing with in order to treat it. In light of our observations recently I was in touch with neurology yesterday and will be seeing them today. Mark and I never know what's around the corner for Teale, will her seizures continue to be controlled or will they creep out again in new and different ways? Is this seizures or  is it something else, the mysteries of Teale are often hard to figure out. The only thing we can do is to be vigilant, observing her and making sure any signs of something going on is explored by her medical team. So I again ask for prayers; prayers that we figure out Teale's distress, prayers there is an answer to her mental pain and prayers that if there is no logical answer, this cycle passes and our happier Teale returns... 

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