Being Me…

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

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.



5 thoughts on “Being me…makes me tired

  1. I’m sorry to hear that… Life is so full of up’s and down’s… maybe she won’t have anymore for another two years…


    • Thank you Kodiak. We know that this is probably going to happen…but it has been a lovely respite. Still, it could be as simple as her body weight changing, so we shall see what happens. I refuse to be discouraged!


      • Yes same thought on Kodiak. He has grown beyond his meds… But we meet with doc again soon..


      • We had, oddly enough, just seen her doctor. After explaining the situation, he said that he still doesn’t WANT to up the medicine quite yet. He asked us to video any other occurances that either us or the school notices and take them to him. If the seizures do continue he did give us instructions on upping the amount of one of her meds. But basically he wants to see if this was a one time thing. Sigh.


  2. I’m really impressed with your writing skills as well as with the layout on your blog. Is this a paid theme or did you modify it yourself? Either way keep up the excellent quality writing, it’s rare to see a great blog like this one nowadays..


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