Being Me…

and discovering that that is quite the roller coaster ride. Wanna come along?


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Update on seizures

Well, I cannot believe it has been 22 days since I posted about my daughter’s seizure.  I did talk to her neurologist, or rather her father did.  He thinks it was the problem getting her medicine from the pharmacy and that once she was back on it regularly, she wouldn’t have any more problems.  So far, so good.  22 days and no more seizures.  That was still scary – and somewhat discouraging, in that her seizures are controlled but definitely not going away.

Sigh.  Well, she was diagnosed with a form of epilepsy that she won’t grow out of so I suppose it really shouldn’t surprise me.  Still, you can’t help being disappointed.  I suppose that somewhere in the recesses of my mind there was a small, flickering hope that it would go away.  I know that’s not rational, but there you have it.  As a mother, I can’t help it.

At any rate, life is going back to normal.  We’ve all had a bad cold for over a week now.  That is getting really old, really fast.  If I could just curl up and sleep for a day or two, I’m sure I’d recover quicker, but of course that isn’t going to happen.  This weekend was restful, but of course there was still laundry, grocery shopping, etc. that had to be done.  Ah well.  It is what it is.  I’ll get better any way, but I would really LOVE to sleep.

Right now that is what I want for my upcoming birthday – sleep!

There’s not much else going on.  Due to the health issues, my daughter was out of school all week.  I don’t think she’s gone a full week to school this year, between being sick, holidays, and snow.  Sigh.  I hate that she’s missed so much school – and it makes getting her into a regular schedule difficult.  She did make it through the day today, which was wonderful – and she ate a good dinner, which made me happy.  (LOL, it is the little things that please me these days!)

 


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Seizures, seizures, go away

Sigh.  Five years we made it, five years without a seizure.  Today our daughter had a grand mal (tonic clonic, I think).  SO scary. And so depressing.  Sigh.  I can’t even really put how I feel into words.

After it stopped, we moved her to the couch and made her as comfortable as we could, but she got up and tried to walk to her room.  That was just completely heartbreaking – she could barely walk; her legs weren’t working properly.  I just about lost it at that point.  We got her to her room and she curled up on her bed with her favorite toys and went to sleep for about an hour.

What does this mean?  Are the seizures starting up again?  She was not quite herself for the past few days.  She had several instances where she suddenly started yelling, then crying like her heart was broken.  Were those seizures?  Were they seizure related?  I don’t know.  Some days I don’t know ANYTHING.  Or at least that is how it feels.

I’m going to call her neurologist tomorrow and I’m assuming that he will want to see her.  It has been a while.  It is possible her medicines need to be adjusted for weight change or something.  I guess we will see.  It is just devastating to have a seizure after all this time, even though I always knew it was possible.


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Being me…makes me tired

Today was quite the exciting day.  First, my daughter’s AFOs (ankle-foot orthotics – basically, ankle braces) cracked around one side.  Then, once I got that handled (at least shoes that fit her feet without the braces to her at school), the school nurse called me to say that she had a seizure at school, one that lasted nearly five minutes.

She hasn’t had seizures in two years.  This came as …well, not exactly a shock since she has Lennox-Gastaut Syndrome (which involves intractable seizures and typically, resistance to medicines), but it was disheartening.  I’m holding on to the thought that the typical growth pattern is partially what is causing this and perhaps it will be a simple matter of adjusting her medication now that she’s older and heavier.  Sigh.  I knew this day would come, but the days without seizures have been incredible.

Well, she’s in good health overall, and she WAS able to go back to what she was doing without issues afterward.  I’m grateful for any time at all that we have without seizures, and I am grateful for her good health and that of her brother as well.