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Wednesday, April 23, 2008

4/23/08

Oh, the drama here over the last few days. Last Thursday, wonderful daughter #2 brought home a letter from school regarding her excessive absences. Of course, my first question was, "What excessive absences?" Come to find out, said daughter has been skipping school here and there. For what? No apparent reason – just to take herself a vacation day or two, or seven. Then, when questions, she ratted out #1 – turns out #1 took herself a vacation day or two herself over the last few weeks. My wonderful husband was relaying all this info over the phone to me while I was at work, since he was home with #1 that day for her first day of homebound instruction. I got so very instantly angry, that my first words were, "You better tell those girls to give their hearts to God because their butts are mine!!" What I actually heard him say was, "Your mom is VERY angry." My next words were, "I hope like hell that they are still there when I get home because fur will fly!!" Which again got mistranslated to, "She will speak to you when she calms down." Heh.

The thing is – on the great, grand scheme of life, this wasn't a big deal. On the other hand, though, they lied – they purposefully sneaked out (dressed for school and then waited around the corner until we were gone and came back home. I don't know WHY they thought they wouldn't get caught. But the punishment was swift and severe. I told #2 that she would have to call me from school – a school line - each morning so that the number popped up on my caller ID and I KNEW she was where she was supposed to be. And I told her that the first time she "forgot" to call, I would leave work immediately, drive to school, hunt her down and stay right beside her for the rest of the school day – even cutting up her meat at lunch if need be. And then when she showed disbelief, even saying, "You won't do that," I replied with, "Dare me – just once."

Oh, teenagers – they are wunnerful.

On the epilepsy front, we are nearly through ramping down the Trileptal. At the end of next week, #1 will be on none whatsoever. She is scheduled for an MRI on Friday evening and her pre-admit papers and blood work on Friday mid-day. Just a little over a week away and my baby will be going under for the first surgery. Just yesterday was her 16th birthday and I had a moment of sentimentality and nostalgia. She left school so quickly that we didn't have time to give her a 16th birthday party with her friends. And now that the seizure activity has dramatically increased, we can't really do anything right now, either.

My dad had to back out of coming down to stay with the other two children while we are in the hospital because my dad has decided that mom might not be "with-it" enough to stay by herself. However, mom also decided that she didn't want to stay at my house because the bed wasn't comfortable, the chairs weren't comfortable, etc. You name it and she had a reason NOT to be here. Just a couple of weeks ago she decided that she wasn't welcome at my home (not that I ever said that) and wasn't going to come anyway. I'm not sure where she got that info, but it's in her mind that she's not welcome here.

Anywho – that's enough for now. I'll update more as we get closer to surgery.

Tuesday, April 8, 2008

Latest Update

Wow – it's been a while since I updated. On the seizure front, this past Friday was our last neurology visit before surgery. Her doc decided to begin to wean her off the Trileptal (ramping down about 300mg per week). We decreased her dose beginning on Saturday and on Monday morning right after arriving at school she lost the feeling in her left arm. Her typical aura is numbness and/or tingling on the left arm and leg. This scared her, as she said it happened very suddenly. She called while we were nearly halfway downtown on the way to work and her phone kept cutting in and out. We couldn't understand her and didn't know if it was because she was in the middle of a seizure or in a part of the school that didn't get good reception. To make my nerves even worse, I couldn't get anyone at any extension I dialed at the school to pick up. I could just imagine #1 somewhere in the middle of this 3000+ student campus seizing. As it turns out, she made it to the band hall, grabbed a buddy of hers and they made it to the nurses' office. Even better news is that they approved our application for homebound instruction for her – the ARD is scheduled for Thursday so that we can officially make it so.

Something funny – I told the nurse while I was signing her out that she wasn't coming back to school no matter what the decision of the homebound coordinator was. The risk of her increasingly seizing (say THAT five times fast) over the next 3-4 weeks is too great to have her at school. When we were checking her out of the attendant's office, the attendant gave us a "Return To School" pass. I told her that we wouldn't need it, that #1 wasn't coming back. She said, "That's okay, she can bring it with her tomorrow for her advisory teacher". I said, "No, she's not coming back at all this year," which gained me a very concerned look from the attendant. She finally said, "Well, she'll need it when she returns to class," at which point I just gave up and took the pass and told her that I'd make sure #1 had it in her backpack at the beginning of her junior year. At that point the nurse and #1 started laughing and we all merrily trudged out to the parking lot.