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Sunday, February 26, 2012

Changes & Blessings, part 2

Teale comes off the bus at 3:00pm and her first words are "I wet and the teacher is mad at me." Her "reading" people can be very off. I'm sure her teacher was concerned, not mad, but with profound hearing loss, she often misses much when reading people's feelings. She obsesses on the fact that she wet, she doesn't have accidents and I can see this confuses and upsets her. Teale can't understand that she had a seizure and that is why it happened. I realize I may never be able to explain this to her. As she takes her wet clothes out of her backpack to show me, I just try to tell her "it's ok, you didn't mean to, you couldn't help it," anything to help her. Times like this make me sad, she understands it was "wrong" but she just can't get that she had no control. Hopefully she will move on, but I know Teale and she is sure to bring it up again when her Dad gets home. We do her afternoon medicines and I remind her there will be no school all the next week, this will distract her. She squeals with delight, a wicked high pitch, very loud squeal and clapping like a toddler. I often feel like that it just what Teale has been stuck in developmentally for years, she is much like a big toddler. After school Teale often settles into snack, TV, computer or drawing. She obsesses on the same things, but slightly rotates them. The usuals are Justin Bieber, a movie of some sort, coloring or cutting up paper, she loves to go shopping of any kind and or she carries around a certain doll or stuffed animal. Right now it is the American Girl catalogue she has been stuck on. She asks where her  catalogue is because she left it at home during school. My mind immediately races, hoping I find it easily, so no meltdown occurs. This is one of the issues of a child like Teale, she gets obsessive about a "thing" and if you can't find where the "thing" is fast enough, you are in huge trouble! I can't begin to tell you how many nights we have been woken with her flipping out because the catalogue, doll, stuffed animal, whatever, has gone missing in her sleep! This is a constant fear we live in, a favorite "thing" getting lost or broken can create total havoc in our lives. As we find the catalogue on the couch easily, Teale settles down to look through it. Teale loves holidays and or the anticipation of the holidays more than any other person I know. She talks about her Birthday coming from the moment it ends, every year. Right now she is  stuck on what doll she wants, flipping the pages over and over again and asking me "For my Birthday?" I leave her looking and go to the kitchen, I have more phone calls to make. Mark wants to know how Teale is, the doctors are still talking about a plan for tonight, I need to get dinner ready and Gwenn walks in the door from school. Mark's Mom lives with us and I need to wake her from her nap and take care of her too. Our life is full, we are busy, but who isn't? Taking care of people is a major part of me, I've been doing it for many years. I was a nanny when I was young and then I opened an in home day care. Mark joined me in the daycare business shortly after we were married and we ran it for over fifteen years together. My children, but especially Teale, have taught me the most about care taking. Now with Mark's Mom living here, I have learned much about geriatric care too. Working with doctors has become a very important part of my life, I have learned to be strong in my beliefs for the needs of the person I am advocating for. I don't back down easily when I believe something, but have also learned to work with the team of doctors in my family's life. The nurse gives me the doctors advice and thoughts on the seizure Teale had that day and we discuss ideas for making it through the night again. I deal with many calls because there is much back and forth between the nurses relaying information and then getting back to me after talking to the doctor. I have somewhat gotten used to this, first I talk something over with the nurse, then she takes my information back to the doctor, then the nurse calls me back with ideas from the doctor. I may counter with my own thoughts and it may take another call or two. Today is has taken at least four calls back and forth. In the end we decide to increase her daily seizure medicine slightly and add a preventative medicine at night. Most likely just for this night, but we have used it before and may need it a couple of nights, to be safe. It is a form of valium and it helps Teale to not go into a seizure at night. Her seizure threshold is higher while she sleeps (her brain going into the sleep cycle is part of her Epilepsy) and especially when she is sick. Our seizure plan has been to give her a valium before bed, if she is sick. She has one common factor in her seizure disorder, sickness brings down her threshold considerably. So although she is not sick, with the brief day seizure, we will give her the valium tonight. I feel fairly confident in this plan and pray for the best. Mark will be home soon, at least now I have something to tell him.  Teale sits nearby me flipping through her American Girl catalogue and asking when her Dad will be home. It is all so surreal, she has no clue what is going on with her or how much I worry about her.   ~to be continued....

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