Tuesday, March 8, 2011

Sick Days and an Ellie Update

(Note:  I wrote this post a week ago, but for some reason never finished it and got it posted.  Ellie is healthy and back-to-school now.)

Ellie has had a rough couple of weeks with illnesses.  First it was an annoying cough.  The kind that's just bad enough, I thought it would  interrupt her day at school, so I kept her home for a few days.  Then, a few days later, it was a stomach bug that kept her out for a day or two.  Then a few days after that it was a fever/respiratory symptoms that lasted for five entire days.  The poor girl was just worn out from fighting off illnesses for so long! 

Between all the school she's missed with her medical testing, medication side effects,  and now this last round of sicknesses...it's a really good thing that there is not a minimum attendance requirement for kindergarten or we'd be in trouble.  Thankfully, she's doing well academically and because there is not a minimum requirement,  she'll be just fine moving up to first grade next year.   

In the meantime, I'm really trying to soak in these bonus days with her at home with Cami and me.  It's been so sweet to see how Cami's and Ellie's relationship has really strengthened through this year


And while we're on the topic of Ellie, I'll do another little update on her seizures. Early in our epilepsy journey, our pediatrician told us that treating epilepsy is more like an art than a science, and after nearly six months in the trenches, I couldn't agree more.   The doctor recently asked us to switch her medications over from generic to  brand name.  It's more out-of-pocket expense for us, but we do  feel like it's made a small improvement in the numbers and length of her seizures.  Despite the improvements though, it still feels like we've got a ways to go before controlling them.     The neurologist recently has recommended that we try to increase her dose of the original-horrible-side-effect medication, since it is supposed to be best medicine out there for her specific type of seizure.  We're slowly increasing that again and hoping that her body will adjust better to it this time.  

On another note, it is interesting to see how Ellie has become more aware of her seizures.  She cannot feel when they're happening, but she can often tell when she's had one based on people's reactions to her.  She'll come home and tell me that she had seizure in music class or when they were lining up to go outside, or something of the sort.  I'll ask her how she knows that she's had a seizure and she'll tell me it's because everyone else was lined up and she didn't come and people were calling her name.   Or that they were playing hot potato in music class and she caught the ball and held on to it too long and everyone was saying her name.   One day she even came home really excited because she hadn't had a seizure all day.  When I asked her how she knew that she hadn't, ironically she immediately had a seizure, then proceeded to tell me it's because she did everything she was supposed to right away and no one had to call out to her.  I'm impressed by her matter-of-factness and her powers of observation, but I sure hope we can get these under control before next year when her peers will start to notice the episodes even more. 



K said...

Thanks for the update about Ellie. Tom just asked me tonight how she's been doing.

Denise said...

I was also going to say thanks for the updates. I admire how well Ellie is dealing with it all -- but also you too. I would be a basketcase, but you have always been able to handle these type of things with such heroics. keep hanging on. : )

dad-mom said...

Sure hope the medicine works better and she quits having seizures.

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