Hospital blogging

Alice, my 9-year-old daughter, had several medical appointments today. First, she got her 25-day shot of Lupron at the endocrinologist's office. She has to have that injection every twenty-five days because she has a condition called "precocious puberty", basically meaning that she began to experience the onset of puberty way too soon (age 4 was when we first noticed). They believe this happened because she experienced a TBI (traumatic brain injury) of some sort when she was around eleven months old. That was before we adopted her, and because she was born overseas, the records of what happened are very sketchy and unclear. She joined our family at 20 months, and we were aware that there was a significant potential for her to have health problems relating to her TBI. We're not saints or heroes, we're just doing what God told us to do, which was bring her into our family. We trusted Him to take care of the future, since none of us knows what that's going to be. Would you "turn down" your kid if she were born to you with some of these issues? I doubt it. Well, this was our daughter. We weren't turning her away. Just because she wasn't born into our family didn't really make that much of a difference.

Anyway, she also has congenital brain issues which have resulted in epileptic seizures. Right at this moment, I'm sitting in a dark exam room at the hospital, where Alice is undergoing an EEG to record whether or not her new medication is effectively controlling her seizures. The EEG is an interesting process; they ask that we bring her with very clean hair and have her be sleep-deprived. The clean hair is so that the electrodes will all stick properly to her scalp, and the sleep deprivation is because part of the test requires the patient to go to sleep so they can record the electrical patterns. They also do different kinds of stimulation; one is deep-breathing, where they "hyper-oxygenate" (don't know if that's the right word) her brain to see what it does then. They also use a strobe light at different intervals to see if those trigger seizures.

Before we left to come up here for the EEG, I leaned her head over the bathtub to wash her hair so that it would be squeaky clean. Afterwards, while I was using the blow dryer, she had another seizure. Her seizures are what they term "partial seizures", meaning that they only affect the one side of her brain that is the most abnormal. She is alert during her seizures. Apparently, according to the neurologist, she has seizures quite frequently, but we don't always know she's having one. If it's obvious, it takes the form of making the left side of her body spasm every two to five seconds. Anyway, the seizure she had this morning was one of the obvious ones, so I had her sit down to let it pass while I continued drying her hair. She’s a very matter-of-fact little kid and takes it all in stride.

Currently I'm watching the tech's computer monitor and seeing each invisible seizure as it happens. She's definitely still having them; I'm guessing that the medication is helping, but not completely controlling them. Imagine being in the middle of a train of thought and having someone push the "reset" button on your brain; that's kind-of what happens with Alice, which has obvious ramifications for her ability to learn and retain information. She does read, although she's probably at least three years behind normal kids her age, which means she gets by on kindergarten-level stuff even though she's technically a third-grader.

Unfortunately they don't have wi-fi here at this hospital (Stone Agers in charge or something, I'm thinking), so I'm just composing this and I'll post it when I get home. I'm also working on reading through some of my assigned reading material for my current master's class. Can I just say that I heart my laptop? It's absolutely wonderful to have with me, where I can actually be productive during times like this, where really all I can do is sit and be bored otherwise. This laptop has an extremely quiet keyboard, so I can do it while I'm sitting in the EEG room and not even disturb Alice's sleep.

The reading selection for my class this week has to do with why you're choosing teaching as a profession. Do they really want me to be honest? I teach because it's something I can do and that I can be good at, and it keeps me on the same schedule as my kids so I can be off on the same vacation days as them. It doesn't bore me to death like some jobs would, although I could certainly live without all the staff meetings, etc. If I really could just pick what I'd like to do, it would probably be to be a professional artist and musician. But that hasn't materialized as of yet, so someone has to actually make money and provide health insurance for these kids. Thankfully both Rick and I have good jobs that provide benefits.

Well, the EEG is done. I can see for myself that she's still having seizures quite frequently, at least one to three per minute. Next week we see the neurologist again; I'm guessing he'll change her medication to some other kind.

Lunch today will be with some old friends who used to live here in Des Moines but have since moved away. It will be nice to hang out with them again; we were very close when we all lived here together. Now they, like my family, keep up with us via this blog.